Chemo: Week 4 - concerned.

As I approach the end of week three and beginning of week four, I am a little bit concerned that I'm not doing as much as I should be in fighting this cancer. I feel great. I am doing everything I would normally be doing (and more). 
 I feel great but people with early stage cancers do feel great so I take little comfort in this. I am healthy and strong ( and feel fully recovered from the ill effects of the chemo) and I have to assume the cancer, which is part of me, has recovered likewise.
A friend who has gone through this told me that for cancer patients chemo becomes like a security blanket. That would explain some of my concern. My blanket is missing these past two weeks. As much as I hate the feeling, it is comforting to know we're fighting the fight. It's a star to which we can hitch our wagon.

Three things I can take out of this week:

1. I recover pretty quickly from the side effects of chemo (at least the ones I can sense). This is reassuring since after two more cycles I will have to recover for surgery. 
2. I was able to umpire some baseball games ( those not rained out)  that I wouldn't have been strong enough (or it would have been too dangerous) to do under chemo. 
3. I will be able to cuddle the grand kids all this weekend. This would have been dangerous with low immunity during chemo and I beyond my energy and strength (nearly so even when I'm healthy) without this break. 

I'll take these three things to the bank and save them up for next week when I get my blanket back and I need some warm, soft, memories of beautiful, smart children who are full of energy and life. Like Frank Barone said; " Smell that?", as he sniffs the grand kids heads; "That there's the fountain of youth."

Chemo: week 3 - and holding

Week 3 begins today.
Week 2 had been pretty mild (not too much discomfort or fatigue) so we weren't quite as apprehensive about another treatment as we drove to the chemo place yesterday afternoon. After my blood test, we met with Oncologist (my usual Dr. this time - not his 'don't do anything fun' colleague).

After asking all about the past week (symptoms, any problems, ability to work, etc. ) and checking me over ("any pain here?", "deep breaths", etc.) he was pleased with my progress. It was all good.

But when the results of the blood tests came in he was concerned that my hemoglobin had dropped so much during the past week and, although it was still well within safe range, he was afraid another dose of Gemcenobin would take these numbers down farther than we wanted. Rather than risk a protracted illness, he concluded that we take the following course:

1. Stop our first cycle at the two treatments we've already taken.
2. Take this week off to give the blood counts time to recover. 
3. Stay with our plan to take next week off as well.
4. Begin the second cycle on September 7th at a slightly reduced dose - so my counts don't drop as much.

Woo Hoo (right?)

Well, we're not sure. It's great to have a week without that stuff going into my system. Even though it didn't have much effect on what I've been able to do, it was NOT a pleasant experience. But a week off is a week that the cancer killers will not be in my system and, according to Oncologist, any cancer cells will begin to grow again (though they will be starting from a reduced level). It illustrates what a delicate balancing act this chemo treatment is.

Notes from meeting with Doctor:
This is the first time we've met with our Oncologist since the first treatment so we all had questions:

1. OLD SWICHEROO: Cisplatin VS Carboplatin. Cisplatin isn't currently available so we're limited to Carboplatin until that changes. Carboplatin isn't used as much as Cisplatin but, according to Oncologist,  it is generally considered to be equivalent. It also tends to have milder side effects but this doesn't seem to effect it's potency as a cancer killer. When the pharmacy tells us that Cisplatin is available we could switch back for the remaining treatments but there doesn't seem to be any reason to do this. Oncologist asked me if this would be something I would want to do? I say, why risk more severe side effects for no added benefit. He agrees.
2. COMFORT FOOD: I gained 3 pounds since last week (after loosing ~ 4 the week before). Wife credits this to my eating all the time (virtually) to keep food in my gut (at suggestion of Chemonurse to prevent nausea and relieve discomfort). Oncologist suggests a different tact: queasiness and discomfort  may simply be indigestion caused by the chemo drugs destroying the mucus lining to the stomach and intestines. Since there are no sensory nerves in the stomach the resulting symptoms (body's call for help), although manifesting itself differently in different people, is basically just acid refulux (which seems to be the diagnosis for everything these days - have you noticed?)  And this can be relieved by taking antacids like Tums or Prilosec (12 hour relief). 
3. BATTLE OF ATTRITION: So Wife asked Oncologist what happens to the cancer when we pause treatment like this.  He said it starts growing again, of course. Seeing our concern, he quickly added that this is quite normal. He drew a graph with the curve of a exponential decline that drops quickly at the beginning and tapers off to nearly horizontal. He said; "This is what happens to the cancer over time during chemotherapy." "But", he continued; "if you look closely at the line you will see that it is really a series of humps and valleys where each valley drops lower than the last.  So, even though the cancer recovers a little between chemo cycles, each cycle knocks it down more and more until it's so low that it will not recover." Attrition:  keep pounding away at the enemy until it just gets tired of the beating and gives up. 
4. REVISITING THE PLAN: 
   
   
   
   
   
   • We take the next two weeks off to let my counts recover and resume with cycle two as planned.
   • We will adjust the doses down to maintain count levels throughout the complete cycle.
   • Complete two more cycles (for a total of three) and then evaluate whether to stop and do the surgery or to continue with chemo for the total of seven.

So now what to do with all this extra 'feeling good' time? Tonight I umpired a Fall Ball little league game and tomorrow I will Ump a double header. It doesn't get much better than that!

Chemo: week 2 summary

It is now Tuesday morning (August 23, 2010); the end of  my second week of chemo.  It's been a good week and we've been on vacation (up north) until yesterday so I haven't kept up on the daily events.  Here is the past week in summary: 

After feeling really good on Monday, I was a little apprehensive about the second treatment, last Tuesday. It was supposed to be a much shorter time at the chemo place but by the time we got through all the steps it took about 4 hours. A lot more waiting around this time where the first visit was bang, bang, bang, you're done (5 hours but it moved along).

Our regular doctor had duty at the hospital so we met with another member of the team. My tests were all good and my blood counts had only dropped to the minimum normal range. She said they would continue to drop with the second treatment of Gemcenobin today and that I should continue to watch out for infection or contagion. We asked if we could travel 'up north' later in the week and she said it was okay; "... as long as I don't do anything fun." I loved that. She thought we were going to 'the cabin' or playing on the lakes because she said I shouldn't drink lake water, etc.

This week was billed as being an easier week because I was only getting the Gemcenobin and not the Carboplatin.  The Gemzee only takes 45 minutes to administer (vs. 2 hrs. for the platnum). But with the anti-nausea prep I-V's still take an hour. As the Gemzee was going in I was hit by a feeling of deep fatigue. Like all the crappy feeling of the previoius week landing right on my chest (whole body). Nurse Kim said this was probably the steroids because you usually don't feel the chemo right away like this. I didn't argue but I still believe it was the chemo.

We stopped to eat lunch on the way home. We sat outside at the resturant and I got a little chilled. I had the sniffles pretty bad before bed and I blame that on being chilled. Sniffles passed as soon as I layed down and never returned.

I was still knocked down when we got home so I layed down for a nap. After an hour or so I awoke to  intense panic attack. I have claustrophobia and I have a real hard time in closed places (airplanes, back seats of cars, trains, carnival rides). This was the same feeling only the 'danger' had been injected inside my body and there was no way to get out of the situation. (The last time I tried to fly, I made them go back to the terminal and let me off the plane.) This was a desperate feeling but I have read that you need to distract yourself to end the attack so I grabbed my iPod and went for a walk. I listened to White Stripes (LOUD). Some of those songs I like to sing along, so I did. I must have been a sight to see - but it worked, so I don't care.  I don't know if the panic was from the chemo or  the steroids (for nausea) but I was able to keep it from returning the rest of the night ( by dodging any little feelings before they can take hold). I didn't have any trouble getting to sleep and slept well through the night.

I had that crappy feeling the first and second day. It's kind of a warm (not a comfortable warm) feeling in the core of my body (and head too, I guess). It's nearly nauseous but not quite there enough to take another pill or take a Queasy Drops. Eating helps - but only while eating - so I try to eat small amounts, often. It's like a weight that's pressing everywhere. I was only on the milder anti-nausea drug (Ondansetron) because nausea isn't one of the big side effects for Gemzee. I still had some of the booster (Prochlorperazine) haven't needed it. summary

It's amazing how much energy you have when you feel good (or not as bad as you expect). I spent most of this time in my workshop; assembling, sanding and finishing on the fourth of a series of wood stools that I've been building. It's nice to have this piece-work to keep my mind focused on something else.

By Thursday I was feeling pretty good so we made the drive 'up north'. I was fine driving the first 2/3's of the 5 hour trip and then turned it over to Wife. I spent the rest of the week visiting relatives (some had driven from Arizona) and working on our tree farm.

I DID do some fun things but I didn't drink lake water. I did check on an experiment I did in planting trees this spring.

April: Transplanted Walnut with carpet

 We have an area on the farm has such rich soil so we've had a hard time getting the young trees to survive the competition with the grass. This spring I cut an old carpet into squares (2 - 3 foot square) and layed these around the newly transplanted Walnut.

June: Carpet providing mulch for young transplant

In June, I checked the progress and found all the seedlings had survived and were growing and the carpet was effectively holding the competing grass at bay.

August: Grass has draped over carpet but hasn't encroached on tree.

By mid August (this trip) the grass had draped over the carpet so that it looked like it had defeated the carpet when in fact the carpet was still holding the grass plants at bay and providing effective mulch for the growing tree.

Vandalism at the Baker house.

Evidence: Click on pictures to examine.

At approximately 2 PM on August 14, Husband (me) was walking out of the workshop when he noticed a pile of wood chips on the lawn.

He looked up to discover that something had chewed a large hole in the side of the Baker house.  The vandal had also ripped off the fence on three sides and then chewed up the floor along one whole wall.  It was obvious what the vandal wanted but we've never seen this sort of flagrant disregard for property in all the years we've lived here.

We keep a lot of bird seed in that house (mainly black oil sunflower) so we figure the vandal must have been after food. But everyone in the neighborhood knows they are welcome to take whatever they need - free of charge - no questions asked. All we ask is that they don't waste it -- and they allow us to watch.

The Baker house has been hanging in the yard all summer without anything taking much interest. It is much smaller than it's neighbors and more difficult to access. And, although it is regularly visited by many birds and an occasional squirrel, it remains the least popular hangout in the yard. Everyone has been very nice about eating the seed and leaving the house intact. Why would someone suddenly take such an enthusiastic interest in such a meager supply of food.

The Baker house

The only known witness to this event was Wife, who was  in the living room - which over-looks the yard - when it happened. Wife explained; "I was sitting in the living room, watching TV, when I heard this awful racket in the yard." She explained; "I didn't think much of it because it's common for the birds to make a commotion when a neighbor cat is in the yard."
 "I should have looked right away."; She admitted; "But I was distracted and by the time I did look - all I saw was the house swinging madly from on it's hanger. "

Of course the first suspect is the rascally squirrel. But it looks like the whole corner of the house was bitten off. This would take much too much strength for a squirrel; or at least a much larger mouth.

Other possible suspects could be deer, bear, opossum, muskrat, gopher/chipmunk, and raccoon. We live in the middle of the city so if there was a bear, we would have heard about it. And a bear would have chomped this whole house in one bite. Deer have been seen in our yard but not for a few years. Opossums, muskrats,  and gophers don't usually climb and probably couldn't jump the 4+ feet to reach the house. This leaves the raccoon as the prime suspect.

We haven't had many raccoons since the city switched to covered trash cans but there have been recent reports of sightings in the neighborhood. A waste basket was overturned and emptied on the deck. And, on the night following the vandalism, a large feeder was completely emptied. 

So Husband and Wife agree that it must have been a raccoon. Another mystery solved. Which only leaves some minor house repair and maybe a little higher location for the Baker house, and neighboring feeders, in the future.

Chemo; day 6 - back to feeling normal

What a beautiful day!! Weather is perfect. Looks like it will be the nicest day of the whole week (or maybe even month).

I woke up this morning feeling perfectly normal again. Went for a bike ride (after eating something, of course). Hauled a pinball machine, I've been been fixing for a friend, into my basement where it's closer to me and my instruments. It was getting in the way where it was and this will make it easier for me to work on if it's in my basement. [More about this pinball repair project]

finished version of 8-legged stool

Proceeded with sanding the top of another 8-legged stool.  These are some silly little stools  (that my brother designed) that are fun - and challenging - to make.

It's starting to register in my brain what the strategy of this Chemo-therapy is all about. This is my day for my body to return to normal. My body has survived this round of 'poisoning' and it has recovered. Tomorrow they will sample my blood  to see if my Kidneys are still working and my blood is back to normal. If everything checks out, they have learned that the doses they gave me last week were correct. I believe that if I had recovered yesterday and was feeling normal, they may be tempted to tweak up my doses tomorrow. If I still felt shitty today they may have backed them off a little.

Anyway, today is my day to feel normal again before I prepare for another week of - whatever comes. The weather is great. There is a nice breeze to keep the mosquitoes away so I can catch up on some gardening. With time and energy left over to catch and relocate another chipmunk, work some more wood, go to Perkins for dinner with Wife and Son2, and to end the day with a nice glass of wine. A great day to be alive.

AND I am in a good enough mood to catch up on my BLOGing.

Chemo; day 5 - whole body is a square peg in round hole

Sunday.
I have run out of nausea pills (except for the 4-hour boosters) but they seem to do the job. And I have those Queasy Drops.
Today I can concentrate enough to write on this blog.
I'm not sleeping at night as well as I was earlier in the week. This is pretty typical; worrying about whether I'm doing the right thing about (fill in the blank)
My body just aches in general. Every part feels a little off kilter; like trying to jam a square peg into a round hole.

The wind has picked up today so I can spend time in the garden without getting eaten alive. I can cach up a little so I weed, pick stuff, prune back blighted tomato plants, toss giant zucchini onto the compost - a shame, I know.

Went to a friends house to help her with her moving sale. I took some flower pots off her hands - nice big ones - that I am using to re-pot some of our deck plants that have outgrown there's. Just what I needed. Now I can use up some of my newly "screened" compost. (I built a compost screening machine, earlier this summer, out of spare parts. It works pretty slick. [Here's a video of the screener in action] )

I drove a chipmunk out to the airport. I'm catching chipmunks in live traps and moving them out of town. Is this humane? They probably won't survive out there but it's way better than poison. I trap one and it seems like 3 more show up. It's a summer-long dance. We live next to a golf course (on the other side of the tracks - of course) and I've come to believe that people who live down town live trap them and dump them off at the golf course. There's nothing to eat on the golf course so they find their way to our yard. It's like a relay race to get them moved out of town. Friends tell us if we didn't feed the birds we wouldn't have chipmunks.  We like birds.

Chemo; day 4 - tired of eating.

Saturday.
Tired all day. Just worn out. Don't even feel like writing.

Muscles all sort of ache. I can still exercise so I do - and stretch. That helps a little.  I take Tylenol for the pain and that helps a lot. I worry about taking Tylenol because it is known to effect the Kidneys and that's the most scary side effect of the Chemo, as well.

I'm tired of eating but I still do. "Keep food going through the system. " Thank goodness for watermelon! (both food and drink). We're checking the internet for smoothie recipe's - there are a ton.

I'm learning how both constipation and diarrhea can be a side effect. (I'll never learn how to spell diarrhea.)

I sand and glue a little on a couple woodworking projects.

There's more golf on TV and friend from NY sent us an iTunes TV series called "IT Group". She sent the first season. We watched the first episode.  It's great! They've got those "IT guys" spot-on correct. One reason I retired. 

Did I say, I don't feel like writing?

Chemo; day 3 - overwhelming blaahh

Sleeping through the night is getting harder to do. Wife says this is because daytime naps are getting longer. I'm still zapped by this. I don't feel terrible but just bad enough to not want to do very much. Eating is becoming harder as a lot of things don't sound good anymore (there are still plenty of things that sound good so no fear finding food).

Napping today is easier than yesterday. It's cool and rainy all day - surprise for the forecasters. There's golf on TV (good for sleep) so I sleep all afternoon.

I'm not worried about constipation any more (hmmm) that's always a relief.

The nausea (I'm learning how to spell nausea) creeps in occasionally. I take the booster pill (Prochlorperazine - or #2 on my little chart) and that knocks it down. A friend from NY sent me three whole tins of "Queasy Drops" that seem to work, too (even with the pills, I can feel it lurking).  ChemoNurse told me not to wait to take 'boosters' for nausea - knock it down right away before it gets any momentum. (Same thing they told me for pain pills after my biopsy.)

I get out between rain showers to tend my caterpillars. I raise moths as a hobby and the caterpillars are in little netting bags tied to the branches. These need to be moved to new branches after the caterpillars run out of food. [Check out my 'mothman' web site for more]

The garden needs tending but the mosquitos are so fierce that it's not worth the fight. I make a couple quick drives into the 'jungle' hoping the little blighters will think my blood has a bad taste (with all the chemicals) and leave me alone.  Wrong.

Wife talks me into going out for dinner - good idea. We hit our favorite fish fry place and split a steak dinner.  Crazy! Know what else is crazy? I ordered a Spotted Cow and couldn't get down more than a couple sips. That's crazy!

Chemo; day 2 - Anyone get the license # of that truck?

All day yesterday (first full day after chemo) and this morning, I was saying; "Hey, this isn't so bad," I was eating and drinking. Food tasted good and I was enjoying having to eat all the time to keep food in my stomach and bowels (doctors' orders). I felt good enough to go about my daily routine. In fact, I felt just fine.

Then - around noon today -  it hit me like a truck. I just felt zapped; overwhelmed with 'blah'. All I  could do was lay back in my lazy boy and sleep.

Although sleep sounds nice (and I'm usually good at 'sleeping off' the flu) this wasn't an easy slumber. (It's the hottest day of the year and the ceiling fan was going full tilt so it's almost comfortable.)   I woke up after a couple hours and had a crushing feeling in my chest and back like I'd slept on my back too long. So I got up and walked around which brought quick relief. I'm not  tired enough to sleep but after trying to do things I get fatigued and have to sit down. ChemoNurse said to listen to my body but it's sending me mixed signals. This is like having a really bad flu without the puking (thank heavens for the pills).

The new starter for our boat has finally come in (after waiting 6 weeks) so I install that. It'll be nice to get the boat on the water after waiting all summer for a break in baseball (work). I was a little worried about going out in the sun but it only took a few minutes to install . I've gotten very good at swapping starters in the process of installing three new starters trying to get one that both fits and works. This one works perfectly. 

Damn the torpedoes, full speed ahead!

After 30 minutes of grilling, my oncologist asked me if I wanted forget chemo and just do the surgery. I said, 'no'. I was satisfied. I was ready to go.

"Let's do this!"

My "chemo nurse" (Nurse) for the day gave us a tour of the facility on our way to the place where I would be spending the next five hours. The place is in one large area of alcoves with each containing one Lazyboy with a tray, a couple chairs, a cabinet, an IV holder thingy, and a TV. Nurse showed us rest room areas, and walked us through a nicely stocked snack areas with coffee machine (that make single cups) and a refrigerator filled of water, juice, soda, etc. All meant for Wife and me - as much as we wanted. She talked about folks who are there over breakfast and lunch who either bring a sack lunch or sneak out to Micky-D's or some other place in the neighborhood for take-out. We can do whatever we want for nourishment. We are to make ourselves at home.

As we walked to my alcove; '#11 chemo way'. We passed another guy who was hooked up. I think nurse had just asked me how I felt and I said; "nervous". The guy smiled and said; "It's not that bad". And he looked like he meant it. I had a new member in my support group.

I got comfortable in my Lazyboy and we started the show. Nurse began explaining what was going to happen today while she prepared me for the I-V (heating pad on my hand) then she ducked out to check if my med's were ready at the pharmacy.

We spread out our stuff - computer, newspaper, my 'log book' loose leaf binder. Wife went to get some coffee for her and tea for me.

By now Nurse was back and ready to connect the tubing - my hand was sufficiently warmed. We talked about ports (where they install a connector permanently into your body so they can just hook up the IV without the needle every time) but that's not for me.

First on the menu was plain saline. They wanted to get as much fluid in me as possible to dilute the med's that were coming.

This was followed by three 'appetizers' for nausea:

1. a bag of Amend (Aprepitant), the 'expensive stuff', which will be my main defense against nausea for the next three days. (Pills are waiting at Walgreens - $200.00 for three - thank goodness for insurance!)
   
2. a bag with Dexamethasone; a steroid that helps the action of the other two ( I won't pass the doping tests for a few days ).
3. Finally a bag of Zofran; the third anti-nausea.
   

Once the prelims were done Nurse brought on the main course; Gemzar and Carboplatin. (WHAT? CARBOPLATIN?) I thought I was getting Cisplatin. Nurse assured us that this is equivalent to Cisplatin but is less often used because many of the studies have used Cisplatin, spacifically. The Carbo form has slightly milder side effects. It goes in slightly faster so we could get out of here sooner. But you know why? They can't get any Cisplatin because it's in short supply around the world. I've gotta think there's some reason for this happening - some advantage for me. It was meant to be and I'll be better for it.

While all this was going on (and the chemo was going in), Nurse brought a folder of pamphlets and bagan to explain all about drugs was getting, what I would need to do (how to act), and what I could expect to feel over the next week(s). (much of this information is found at: http://chemocare.com/.) She was surprised that I hadn't received this and WE were surprised that we were getting this WHILE the stuff is going into my veins. But there were no surprises and nothing that would have changed my plans.

Nurse went through the folder and explained everything very carefully. She made us feel like we had her all to ourselves for the duration and basically 'we just talk'. She's been on the front lines of chemo for many, many years. She has seen this procedure evolve over the years and seems to know what she's talking about. And most important, she has the time to talk with us.

She said that I should (just the high points are listed here):

• keep hydrated with at least 8 - 8 oz. glasses of water a day. This is less than I'm used to drinking. Fruit juice, fruit, pop cycles, ice cream, malts, shakes, soda, etc. Alcohol and caffine don't count. Dehydration is a dangerous because it leads to lack of thirst, so be careful. I'm thinking; This will be easy - I'm used to drinking lots more water than that in a day.


• keep a steady (if minimal) amount of food in my stomach at all times. Eat snacks and meals. Eat something right away when waking (I do this anyway - I always have to eat something as soon as I wake up, no matter what time of the day or night). All this keeps down the nausea and ill effects on the stomach and intestinal lining (actively dividing cells that are effected by the chemo). Doctors orders to eat? I can really live with this one!


• Keep clean and avoid contact with sick people - like Howie Mandel. Wash my hands a lot - especially when you get home from being out and about. Again; check!


• Be careful not to bruise or cut myself. The chemo is hard on blood cells (red & white cells and platelets) since they are actively replenishing themselves all the time and therefore are blocked from replenishing themselves for the 3 or so days this stuff is in my system. No umping behind the plate. No contact sports.


• Do everything I feel like doing (or that I normally do) during the day. Pay attention to what my body is telling me. Rest when I am tired. Don't over do but don't mollycoddle.


• Have sex if we feel like it. That's what she said.

We chatted some more about this and that. I mentioned that I was nervous about hearing loss and that led into a discussion about how we liked our hearing aids - she and I wear the same kind - and how busy our audiologists seem to be. I've already made an appointment with my audiologist to get a base-line to see if my hearing suffers but the soonest I could get in wasn't until after 2 weeks into chemo chemo - some base-line.

The first bag of chemical (Gemcitabine) was empty after 45 minutes (that was quick). Nurse hooked up a second - the main course - bag of Carboplatin. This required a connection right at the needle - something about a dedicated line. This should only take 75 minutes since it can go in faster than Cisplatin.

Now that Wife and I were all settled and sufficiently informed (or overwhelmed), Nurse could leave us to digest all this while she attended to other duties.

Wife fetched us each a cup-a-soup (it's lunch time) and some more beverage. It tasted good - no effect on taste buds yet. I made another trek to the bathroom. Gotta keep those fluids flowing.

Wife settled in to a magazine while I dozed off. After a short nap, my snoring woke me up. I fealt refreshed from this power nap.

The oncology social worker, seeing that I was awake, stopped to introduce herself, and some of the services she offers. As the end of the Carboplatin was draining into my vein, Socialworker was talking to us about Gilda's Club when it hit me, for the first time, that I have become a member of a very elite group: Cancer Survivors.

Last questions before go

Even as Wife and I drove to the first chemo appointment this morning, I wasn't sure whether I was going to do it. My doctor sat with us for more than half an hour and we talked again about how this stuff really works and why we should do it now. The first time we talked it was like Chemo 101 for me. This time I had studied up and I was prepared. I think I gave him the tough questions about side effects and mechanisms and he couldn't side step the answers by saying; " it's too complicated."

After taking a blood sample to test for blood count and kidney function, I met with the oncologist again.

Q&E:

1. Indiscriminate (blast away and hope we get the cancer).


"The principle function of cisplatin is to bind to DNA during replication which is part of cell division that replaces current cells (organ maintenance and repair) or adds to current cells (normal growth and development or Cancer tumor growth). The consequence of this, is the activation of repair processes which eventually cause cell death (Apoptopsis).



• Chemo (cisplatin) attacks the cancer (and all other cells) when they are actively dividing (mitosis). Basically it kills 'anything that moves'. But cancer cells aren't constantly dividing and they don't divide any faster than a normal cell. But cancer developes in a cascading sort of growth and the initiation of apoptopsis has the effect of breaking up these chains and either shrinking the tumor or causing it to disipate intirely.


• Side effects on normal tissues is more of a loss of individual cells that are replaced after the chemo leaves. These new cells repair the damage and fill the void and that's all.





2. Permanent side effects (nerves, kidneys, hearing, sight, mental ability):




• Again, the therapy is not a one shot deal producing all or nothing results or side effects. It is a process composed of multiple treatments and cycles of treatments. Each step is carefully monitored for signs of developing side effects (and results) and these signs and symptoms are dealt with before therapy treatments continue. Much has been learned over the years about how to deal with these and adjust medications to maximize effect and minimumize (eliminate) side effects.


• Reports of permenant imparements of mental capacity have not been substantiated and have to be taken with a grain of salt. Like all side effects, the over all side effect is a combination of actual physical effect and the individual patients sensitivity to changes in the effected system (tolerance to pain, etc.). Or - some people are just whiners.

So in the end it came down to his three main arguments:

1. We don't loose anything by doing this first. (two or three rounds of chemo)


2. We get started faster if surgery finds cancer has escaped the bladder - nipping it in the bud. Many studies, and general consensus in the field has this making a difference with this cancer.


3. Won't impact surgery. I will be perfectly ready for surgery two weeks after last chemo.

Chances are good that even if they don't find any evidence of spread during surgery, They would still want to do some chemo and I'm in much better shape to successfully handle chemo now than I will be after surgery.

Finally he asked me if I really wanted to forget it and just do the surgery and I said; "no". Lets do this.





So we did it.

Questions and Answers

I've talked to my urologist. I've talked to my surgeon. I've talked to my oncologist. I've dug through the internet for whatever I can find (reputable sites) on the bladder cancer and it's treatment (surgery, chemo, radiation). My head is spinning.

Everyone I have met in my brief tenure with cancer treatment (doctors, nurses, PA's, friends ) have told me to ask questions - there is no dumb question. Right? So this morning I started calling around to ask some of my questions.

First I called my surgeon' office and left a message for a call back. I had such a nice, and informative, talk with him last week and I was comfortable with the idea of surgery. After talking with the oncologist I felt a little disoriented because chemo is something I knew nothing about and he was throwing it all at me (a friend says; 'Chemo 101'). I just wanted to get back to the 'simple' concept of surgery; at least something I thought I understood (cut here, stitch there, wake up, press "the button", heal ).

The surgeon's nurse called me back within 30 minutes. She said he was unavailable to talk but she could send him my questions. How do you put what I said above into a question? After several attempts I finally said to ask if, in his experience, people with my form and degree of this cancer generally opt to have neo-adjuvant chemotherapy. And if, in his experience, this is the 'standard of care' the oncologist claimed. That's all I could come up with.

• Later in the afternoon - while we were at the fair - she called me back and said the surgeon agreed with this course of action and said it has demonstrated good long term results in treating and iliminating the form and stage of cancer that I have.

Then I called my oncologist. Again, I got a service and I asked for someone in oncology group to call me back to answer some questions raised on the internet. Within 10 minutes an oncology nurse, called me back. We had a nice long chat and I posed my questions about side effects and mode of action (based mostly on what I've been reading on-line).

Indiscriminate (chemo attacks all actively dividing cells): Blast away and hope it hits the enemy (carpet bombing).

• she said this is a good one to ask the doctor - she said please ask the doctor.

Nausea: One of the primary side effects of the Gemzar and Cisplatin.

• she said this is something they have learned how to treat very successfully and she listed out (and entered orders for) the following:
• Amend - the front-line defense (and expensive). IV during chemo and one per day after.
  
• Prochlorperazine (this is the fine tuning - take if I still feel nauseous )
  
• Zofran (Ondansecon) - second regular defence. IV during chemo and every 12 hours after.

Nerve damage: I'm most concerned about the permanent or long term effects on the nervous system and even brain function.

• Nerve damage (Neuropathy) - like all the side effects - is closely monitored during the treatment cycles. If symptoms appear, dosages and even chemicals may be adjusted between treatments and/or cycles.
  
• Chemo is administered in cycles (doses) over time. Side effects don't happen all at once (like a light switch); they are cumulative. We (the oncologist and me) carefully evaluate effects and progress after each treatment and cycle and make adjustments if necessary.
  
• Agreeing to chemo is not signing a contract to continue to the end. These side effects If, at any time, we decide the treatment is worse than the disease we can stop and move right to the next step (surgery). I have been told this but all the ramifications hadn't really sunk in - it was a relief.
  
• Again, this is a good one to ask the doctor.
  

Loss of hearing (temporary and permenant): I am already half deaf (40-60% loss).

• Again, this is monitored and adjustments made. I made an appoint with my audiologist for a hearing exam. It's been too long since I've had one anyway.

Finally, she said to think of cancer as a thistle that we don't want. Surgery goes after the thistle but not any seeds. Chemo goes after both.

I've spent 60 years taking - what I consider to be - very good care of this body. I work out. I stay in shape, watch my weight, don't smoke, avoid salt and sugar (AND high fructose corn syrup). All that.... And each new doctor I meet is amazed that I don't take any pills. I don't want some 'arbitrary' (unecessary?) treatment to undo what I've done just on the chance it will be benificial.

But, I much better after these discussions - I've done all I can do for now and the next step is a discussion with my oncoligist before treatment.

Wife and I decided to go to State Faire in Milwaukee. We've never been there and always say we should go.

Is neo-adjuvant chemotherapy the right thing to do?

After reading up on Cisplatin and other Chemotherapy's, I'm starting to question whether it's a good idea to do the chemo before surgery. According to what I've been reading, this stuff isn't as targeted as I thought. It kills any cell in the body that is actively dividing (it binds to DNA during cell division).

This article was one of the references listed on the Wikipedia site for Cisplatin (It's long winded but raises some good issues - at the beginning):
Anti-cancer Agents: A treatment of Cisplatin and their analogues

Cancer cells are really no different than other cells that are actively replenishing themselves as part of their (or their organ's) function like Bone marrow, nerves, intestine linings. It also attacks kidneys (big time) and inner ear and even eyes (and of course hair follicles).

My Oncologist argued that although chemo is a 'blanket bombing' sort of strategy it would be good insurance against the chance (perhaps small) that any cells have moved out of the bladder and gives us a leg up on attacking them if they have. This is an insurance policy, but like any insurance, there is a cost to reducing the risk. I thought it was interesting that he didn't want to start treatment that day because he was afraid that IF there were complications from chemo, I would feel like I had been pressured (hard sell) into chemo.

I'm just thinking I should talk again with my surgeon to see what he's seen and what he thinks. These guys are specialists and it seems like they are pretty tightly focused so it will come down to me in the end.

I've been talking with friends (on Facebook and others) who have known people who have gone through this and I don't remember hearing about pre-operative chemo.

In this case clinical studies don't seem to be much help. There's one study (10 years old) that showed a significant improvement with this strategy but they weren't using this same combination of chemicals.

Meeting with Oncologist

We met with Oncologist this morning. He had a completely different perspective, it seems, for treatment priorities and timing of treatments. We had looked him up on the internet (Dean web site) and Debi said he didn't look as scary in person.

He took a complete history (it seems like we need to do this for every doctor we see - and they're all using the same software and accessing the same databases). He wanted to know all about my family - parents, siblings and children. He was amazed that I don't take any medicine (every doctor is amazed at this - maybe my brother is right when he calls them all pill pushers). He wanted to know about any aches and pains; problems climbing stairs; whether we own a house; problems with any bodily functions. These were new questions. (I need to start a log of symptoms, treatments, visits, surgeries, etc. )

He was very much in favor of beginning chemo even before surgery. He says there is no evidence of spread (based on CT scan and observation) but it only takes one or two cells getting into the liver or bones to cause problems in the future. He maintained"you can live without a bladder but not bone, liver, or kidney.

He is strongly recommending a course of neo-adjuvant chemotherapy. Start right now and attack any cancer that may be floating around - both in the bladder and anywhere else it may be - and then have the surgery to remove the bladder. The alternative is to wait till after I recover from surgery and then begin chemo. This will delay beginning this attack for months while I recover from surgery which would give any cells that may be outside the bladder time to take better hold in these other places and even spread more.

He says what we're going for is disease free in 10 years not only survability. There's a big difference.

At least a two month course of 3 per month with one week off between. If I tolerate the therapy we might do more. The total he recommends is 6 cycles. This can be split before surgery and after. Or all at once.

He really shocked us by asking if I wanted to start today!! I recoiled at first but after a while I reconsiderred. He said it probably was best to wait till next week to give me a chance to consider. His arguement was that there are risks and if we jump into this without due consideration, I may feel like I was forced and regret it later.

The treatement he recommends is based on Cispatin with
gemcitabine/cisplatin (jem-SITE-ah-been-sis-PLA-tin)

From Cancer Society Web Site; "A chemotherapy combination used to treat malignant mesothelioma, advanced non-small cell lung cancer, advanced bladder cancer, advanced cervical cancer, pancreatic cancer, and epithelial ovarian cancer. It is also being studied in the treatment of other types of cancer. It includes the drugs gemcitabine hydrochloride and cisplatin. Also called gemcitabine/cisplatin regimen."

He has scheduled me for the following (unless I change my mind):

• Tmt one - Aug 10 with gemcitabine/cisplatin combination for 5 hours. The length of time for this first treatment is because cisplatin can be very hard on the kidneys and must be administered very slowly and with lots of fluids. Otherwise it can build up in the kidneys and cause damage.
• Tmt two - Aug 17 with gemcitabine alone for 45 min.
• tmt three - Aug 24 with gemcitabine alone for 45 minutes.
• one week break and the repeat this cycle for at least one more before surgery.
  

There are two studies listed Cancer.gov web site relating to neo-adjuvant chemotherapy (pre surgical):
First from 2000 where they spacifically studied bladder cancer. The results were clear but the study was relatively small and that 7 previous studies had failed to detect any benifit to this approach. This study used three rounds of chemo prior to surgury with another Cisplatin based regime (MVAC - methotrexate, vinblastine, doxorubicin, and cisplatin).

The second study sited was published in 2010 and was on biliary tract cancer (liver associated) in locally advanced stages or metastatic (spred into system). They compared cisplatin alone and cisplatin with gemcitabline regimes. This study was aimed at a condition is relatively rare and nearly always fatal (5 year survival is 15 percent). This treatment was very successful at increasing the number who had progression-free survival. The disturbing result was the side effects of the therapy. Althought noone died due to the treatment there were hematologic toxic effects in 32 percent of the patients who were given the gemcitabin/cisplatin regime.

Or oncologist says they have learned how to mitigate these effects and he assures us that the risk is extreemly minimal, especially compared to the potential benifit of increasing the odds of being CANCER FREE after 10 years.

This is all very compelling.

Notes from first meeting with the surgeon

Debi and I had our first meeting with the surgeon who will be doing my cystectomy (removal of the bladder). We both came away feeling much better - or more confident - that we can beat the cancer and that living without a real bladder (and prostate, etc) won't be all that bad.

I had a few pages of questions and he actually answered most of them before I even asked. He's a young doctor (Debi says he looks more like a rock star) and he exudes both confidence and competence. He has done a ton of these (a couple per month) and carefully went over the procedure, available options, chance of success (and what they do to insure/verify success) and what to expect for recovery and quality of life. He spent a lot of time on how the new system will work, and what problems others have had before me - and what they did to deal with it.

Before we schedule the surgery he said that recent studies have shown taking a 3-month course of chemo before the operation has had some positive results in reducing re-currence of the cancer after the operation. He set up an appointment for us for this Friday with an Onocologist to discus whether it would be a good idea in my case.

The other decision I need to make is what sort of replacement I want for the bladder function. Either:

1. an Ileal Conduit which takes a small piece of my small intestine and forms a tube that connects the kidneys to a stoma in my stomach wall. This requires wearing a pouch on the stomach.
2. a neo-bladder which uses a couple feet of my small intestine to form an internal reservoir that is hooked up to all the current plumbing.

There are pro's and con's for both. The first requires one to wear a pouch all the time. The second has some problems for some people with leakage. I'm leaning towards keeping the current plumbing. It'll take some getting used to but I'm pretty good at making things work.
Other things:

1. He makes a 4" incision from the belly button down (some cut that and continue around the belly button an inch or so higher. (His specialty is minimal invasive surgury.) Some have started to use robotic surgery but that only works for removal

2. He uses a nerve sparing technique in which he carefully moves the nerves that control the mechanism of erections out of the way when they remove the prostate. This helps retain this function in the majority of men.

3. He will take the small lymph nodes next to the bladder. I asked if I'd miss these and he said there are millions in the body and these are just two small ones. They send these to be analised for presence of cancer cells. If the cancer has made it out of the bladder these are the first place it would show up.

4. So how do you pee with this new bladder. It doesn't have muscles like the old one so it cannot expel the urine without help from outside. So you sit down and relax your pelvis muscles while pressing down and in - with your arm - just above the pelvis. This forces the urine out of the new bladder. No more standing up to pee - but there are a lot of people who have dealt with this problem for a long time (eg. women ) so I'm not too worried.

5. Time: the actual surgery will take between 3 hrs (for the ileal conduit) to 6 hours for the neo-bladder. Up to 5 days hospital stay to make sure the intestine wakes up and there are no problems with the new bladder. Full recovery can take up to 6 weeks - but it's usually faster.

6. follow up chemo or radiation depends on what they find in the tissue samples from the different organs removed.

Meanwhile I can do anything I want - physically. So I've signed up for a tournament this weekend to ump a couple games. Feels good.

day five - is it okay to wait

Woke up this morning wondering whether it's a good idea to wait this long before surgery. Shouldn't we get the bladder out of there ASAP? Will delays give it time to spread?

I don't have much control over this because we have to wait for the surgeon to fit us in to his schedule and wait for a spot in the operating room. We are scheduled to meet with the surgeon next Wednesday and will find out all this at that time. Maybe he's already got me scheduled since he knows I'm coming and, if there's urgency, he will certainly be proactive.

I have visions of the remnants of the tumor - the part that was already imbedded to deep in the muscle wall of the bladder to get out with the TURBT procedure last week - being all pissed off and - feeling threatened - sending out all kinds of seeds (like a tree that has been wounded will sometimes bear a large crop of seeds).

Again, there is not much I can do but wait - and be prepared questions (this and more).