starting chemo on Monday (April 3rd) and possible growth on remaining testicle

[TSX]

bye, bye hair

Update from the battlefront, day 17: the hair has left the building. It was relatively good until yesterday, when anything I tugged on came out. So out with the clippers to finish it properly. There is a definite sense of freedom that comes with having no hair. I'm gettin' my Moby on.

On the plus side, I must say that the RBC booster I got on Friday is quite the drug. I felt fantastic yesterday and today, better than I've felt in a long time.

-TSX

[Karen]

Ben and TSX,
Sorry to hear of the chemo effects....you guys are trading good information that is helpful to many. Hang in there and my thoughts are with you for getting through this with cures!!

[huckchef]

benp, i just wanted to send some positive thoughts your way!!! be strong and have faith!!! my thoughts and prayers are with you and all of us daily!! best of luck, brian!

[TSX]

Definitely try to get the Zofran if you can. There is no generic alternative for this one (still under patent), but according to the nurses in the chemo ward at Dana-Farber, this particular one is the anti-nausea drug that is most effective overall.

I should also mention that this one is particularly pricey. I've heard anywhere from $30 to $50 (US) per pill. Although my oncologist prescribed 20 pills with 3 refills to get me through the first month, my insurance company has set a limit on how much they will cover: 9 pills every 7 days. Generally, I take one every morning when I wake up, and then on days that it looks like I'll be queasy, I'll take another one 8 hours later.

The Compazine works fairly well too, and it does have a generic alternative called Prochlorperazine. This is what my insurance company substitutes for Compazine for me, and I generally reserve these until afternoon/night time.

Regarding the Bleo business, my oncologist seems convinced it's just a cold I have. We talked about it at length today during my weekly appointment with her, and she listened to my breathing with a stethoscope for a bit, but my next full-blown lung function test is going to be next week before the second BEP cycle begins. So for today I got my third dose of Bleo, which completes my first BEP cycle. My oncologist had the chemo nurse give me Tylenol and Advil to prevent the fever and associated chills/shaking that I had from the last Bleo shot. It's about 10.5 hours post-Bleo as I write this, and so far so good.

My oncologist also gave me a prescription for a cough syrup with codeine, which I must say has worked very well in controlling the nasty cough I've had.

My blood test results today were pretty good across the board, with the exception of the red blood cells. I got a shot of a RBC booster while I was getting the drip today. I don't remember the name of the drug, but I do remember it is made by Amgen since I recall reading this on the packaging. Edit: I believe the name of the drug is Aranesp.

Ben, for your situation I'd focus on getting the nausea under control ASAP, which it sounds like you're going to do. In the words of my doctor, "the hardest part of this cycle is behind you now." I can say that other than the cold I've been dealing with and some headaches from the Neulasta, this past week has been fairly easy for me and I've felt nearly back to normal. I'm looking forward to another similarly uneventful next week before I start the second cycle.

Cheers,
-TSX

[benp]

Many thanks for all this

TSX,

Thanks very much for all this. All your meds are totally different to mine (bar the Ativan which I agree is a godsend) so I am well armed to go and demand new anti-nausea meds next time as this week has seen me burleigh up the bathroom 4 time already. On the plus side sleep comes easily.

I have no port either and I figured out the arm shave bit after the first canula. They didn;t like the spot I shaved though so they still managed to pull some hairs.

Geez I'm sorry to hear about the 5 day Bleo throat. If there's one thing I'm really hoping it's not to have to drop the Bleo for another EP. I agree that round 4 EP scares me a lot more.

Water has already taken on a platinum taste. Delicious isn't it? Still shoving it in as fast as I can. The odd swig of lemonade refreshes the taste buds when can't stand it anymore. Also, I now have a really strong sense of smell and a menu of about 3 things I really want to eat and three things only. My wife reckons I'm pregnant.

Apologies for the short reply today is the Saturday after round one and I'm fading fast. Good onya for all the info, much appreciated.

I wonder how Clint is going?

: b

[TSX]

IV care

I wasn't given the option of having a port-a-cath installed for chemo, although in fairness I should say I never asked for one either. I was planning on getting a new IV for each treatment day, just to avoid having to deal with the IV at home. However, on day #2 of my treatment it took 4 nurses and many jabs o' the needle to find the mark, and from then on I've said leave it in when you can.

The policy in the Dana-Farber chemo ward is to leave it in up to 3 days maximum as long as it looks good at the start of each session (no sign of infection, still functioning well). It's wrapped up in some kind of colorful stretchy rubbery tape material every night, and I've been told to keep it dry. I struggled for the first couple of days to take a shower while keeping it dry, then I found the disposable "Arm Glove" described on this page. It was about $4.50 (US) for a "disposable" glove, although I plan to use it through each 5-day EP stretch. If all goes well, I should only need two IV insertions during each 5-day EP stretch.

The other thing that has helped me with IV care was to shave both of my forearms. This has two effects: the nurses don't have to push around arm hair looking for veins and so are less likely to make mistakes, and the adhesive bandaging used both during and after the IV come off without the pain of ripping hair from the roots.

I should mention that I "shave" my forearms using a beard trimmer set at the lowest setting, which leaves around 1mm-long hair. Using a blade razor to shave is probably not a good idea due to risk of infection.

-TSX

[TSX]

hair loss

Just thought of a few more points I can add.

Today is the 13th day of my first cycle. From what I have read, most guys start to lose their hair around 10-14 days into the first cycle. It hasn't been coming out in clumps yet for me. I can tug on an area and get 1-2 hairs about 25-50% of the time right now.

The other weird thing is that my beard growth has considerably slowed down. It now takes 2-3 days to get what used to be 1 day of normal beard growth.

My appetite has been pretty good outside of the 5-day EP stretch and the couple of days I was dealing with mouth sores. The check-in nurse in the chemo ward takes my weight every day I go for treatment, and I had a weight increase of about 2-3 kg (~ 5 lbs) on the days after I got EP (not an increase every day, just a bump to a higher level than my normal weight but constant over those days), probably due to the 2 liters of IV fluids I get along with the drugs on those days. At the start of my second week, my weight was back down to the pre-chemo level. I've probably lost a couple of pounds (~ 1 kg) this week from the two days dealing with mouth sores however.

-TSX

[TSX]

Hey Chemosabes Clint & TSX,

How was week one?

I felt a fair difference from Monday mornong to monday afternoon.
Tuesday's Bleo gave me a sore throat then I threw up this morn (Wed)
Now I just feel permanently like I could throw up but I'm used to it. Just went for an hour's walk.

: b

Hi Ben,

I'm a week or so ahead of you guys. I should also clarify that since Dana-Farber does chemo treatments over the weekends if desired, and since my doctor's normal "in the office" hours are on Mondays and Fridays, I've chosen to start each of my cycles on a Friday. Saturdays and Sundays are nice since there is relatively light traffic in the Boston area on those days, and the waiting list for chemo chairs is almost nil. My wife and daughter can join me without missing work/daycare on those days also. It's also much quieter in the chemo ward on those days. Many places won't do chemo treatments on the weekends, however, so I'm kind of on an oddball schedule, although it is the standard BEP cycle, just shifted by four days with respect to the start of the week.

I didn't throw up at all yet (knock on wood), so the antiemitics must be working for me. Are they giving you "pre-meds" before the chemo drugs? For me, they have been giving me what they call a "24-hour dose" of Zofran, which turns out to be three regular Zofran pills. The instructions for Zofran say to take one every 8 hours, and something about taking all three at once seems kinda screwy to me. My oncologist said I should have gotten the Zofran through IV instead of pills, that it was a "pharmacy misinterpretation", but that it shouldn't affect how it works either way. I'm also getting, as a part of the lovely "pre-meds" package deal, some steroid called Decadron. I'm not quite sure exactly the intended function of this one with respect to chemo, but hey, free and legal steroids can't be bad, right?

The chemo nurses told me that theoretically I shouldn't need any more anti-nausea drugs during the 5-day EP stretch because of the high-dosage Zofran, but these drugs don't work 100% in every person so sometimes it is necessary to supplement this. I also have a prescription for Compazine (every 6 hours) and Ativan (every 4 hours). I was told these three are prescribed together because there are no adverse reactions if all three are taken at once. I can tell you that the Zofran works well but man does it cause constipation The Ativan I really like because it calms my nerves very well (it's a wonder drug - used for anti-nausea, anti-insomnia and anti-anxiety and apparently with no side effects). One tip the chemo nurse gave to me is that in a sudden onset of nausea, the quickest relief is usually found by putting an Ativan under the tongue and letting it dissolve there. She said it would bypass the liver if done this way and get into the bloodstream quicker. It seems to work well for me this way.

I did get bad mouth sores two days after my second Bleo shot, probably from the first EP stretch catching up to me and not from the Bleo. This caused everything to taste very bad, from water to any kind of food. Water was making me nauseated during the couple of days I was dealing with this. However, it (my mouth) cleared up on its own after a couple of days. I read elsewhere on this site that there are both prescription and OTC drugs to help with this, but my next onc. appointment isn't until Friday and I was planning to wait until then to bring up the mouth sores issue.

In terms of how I feel generally, I was kind of spaced out at the end of the 5-day EP stretch, but the day before the second Bleo shot I was feeling almost 100% back to normal. I had a bad reaction to the Bleo however, violent chills, shaking and fever for half a day (scary), then bad coughing since then that is only now letting up 5 days after getting the Bleo. I plan to speak with my onc. about this to see if maybe we can get a PFT done before the next Bleo shot. I may need to drop the Bleo and add a cycle of EP if it looks like I am one of the lucky 10% for whom this drug totally bites. I hope not - the fourth cycle of EP scares me more than the Bleo to be quite honest. Another tip I can give is that if you get a bad cough from the Bleo, the OTC drug Mucinex seems to work pretty well in controlling it, although it takes quite a bit of time to kick in (the dosage is every 12 hours). The Mucinex is also required to be taken with a full glass of water, so if you're having trouble getting water down that's another thing to consider before deciding whether to try it.

My bloodwork after the first cycle turned out great - better than before I started chemo. My onc. said it was obvious I was drinking significantly more water, which was a good thing, although she did say it is possible to drink too much water. I recall during the Boston Marathon a few years ago, a woman collapsed and died from drinking too much water, causing a condition known as hyponatremia (aka water intoxication) in which the salt concentration in the blood drops dangerously low. At any rate, I think the risk of overdrinking will become less once your taste buds go. Mine are starting to go and I am finding it significantly harder in week 3 to drink lots of water than I did in week 1.

I did get the shot of Neulasta around 24 hours after the last of the chemo during the 5-day EP stretch, in order to prevent low WBC counts. One of the side effects of these types of drugs is bone pain, and I have had a bit of that around my neck, and I've had killer headaches for a couple of days. These side effects take 5-7 days to materialize after the drug is administered.

Hope this helps a little. Try the Ativan under the tongue thing, it really helps me.

-TSX

[benp]

Week One

Hey Chemosabes Clint & TSX,

How was week one?

I felt a fair difference from Monday mornong to monday afternoon.
Tuesday's Bleo gave me a sore throat then I threw up this morn (Wed)
Now I just feel permanently like I could throw up but I'm used to it. Just went for an hour's walk.

: b

[benp]

Vitamin Links

Hey TSX,

I haven't collected all the links and a lot of the info I have came through books rather than the web. From a quick scout around though it seems that searching google for 'antioxidants during chemotherapy' then clicking the first link to 'scholarly articles' leads to a huge heist.

The most negative opinion i have found is from Dr D'Andrea at MSKCC from 2005

http://caonline.amcancersoc.org/cgi/content/full/55/5/319

If you search you will find plenty of articles that are pro anti-oxidants too. Essentially it all comes back to the fact that noo-one has done a research group big enough to have an answer. Astonishing really.

Personallly I want to beleive in the vitamins. The more you read the more it all centres around vit C. People who are pro vitamins say C is the magic cure for side effects and the people who are against see it as the number one evil. I guess the bottom line in my decision to stay off most of the Vits in chemo weeks is that more side effects is a lesser evil than chemo not working. Which is a pityt becomes the more I read the more I feel the pro Vit angle is probably the correct one I just don't quite have the faith to trust that judgement.

Would love more answers if anyone has them

: b

[TSX]

I was diagnosed a bit later than you but had an RPLND on March 8. I'm starting chemo (3 x BEP) tomorrow too.

I'm only slightly out of sync with you guys. I started 3xBEP on Friday, March 24 (10 days ago).

As for the EP vs BEP debate I spent 4 days solid researching it as I love sport and would hate to stop playing.

Same here.

As you will find out Indiana supports 3 x BEP, MSKCC supports 4 x EP.

I don't know if it is the official position of the Dana-Farber Cancer Institute or Harvard Medical School, but my oncologist (who practices at Dana-Farber and is a professor at Harvard) recommended 3 x BEP over 4 x EP, for many of the reasons in your list. The one she was most concerned about was the greatly increased risk of neuropathy from the fourth round of EP.

One more thing about chemo and side effects. There is a fair sized debate raging about whether ant-oxidants (mainly Vit A, C, E and Selenium plus Omega 3 fish oils) enhance or block the effectiveness of chemo. Certainly they seem to reduce the side fx and overall toxicity to the body. From what I've read it seems that in theory they should block the chemo (this is bad) but most studies show that cancer cells dont act like normal cells therefore they are still susceptible and possibly that these vitamins can encourage the chemo to work better (this is good). None of the studies is enough to hang a complete arguement on and since no one can patent vitamins it might be while before there is a study you can beleive in. Myself I have chosen to take none of this stuff in the on weeks of chemo and then take a whole lot of it in the off weeks. This is the opinion I came up with after talking with a research doctor and a naturopath. My oncologist didn't seem upset by it though apparently a lot are.

Now this I find VERY interesting. I take everything mentioned above (and more) normally and have been doing so for years. I gave the list of my supplements to my oncologist before treatment started and she said I could still take everything during chemo.

I did add a couple of things to my normal regimen, based upon advice by Dr. Andrew Weil:

1. "Host Defense" by New Chapter - a blend of 16 medicinal mushrooms used to strengthen the immune system, and

2. Astralagus - In Dr. Weil's words: "My first choice would be astragalus, the root of a plant native to northern China and Inner Mongolia. In contemporary Chinese medicine astragalus is a chief component of fu zheng therapy, a combination herbal treatment designed to restore immune function in patients undergoing chemotherapy and radiation. Research in China has demonstrated increased survival when patients receive both herbal and conventional cancer therapies, and several studies in the west confirm astragalus' anti-viral and immune-boosting effects."

Ben, can you point me in the direction of any studies suggesting that antioxidants block the effects of chemo on cancer cells? Or any article debating the pros and cons of these issues?

Thanks,

-TSX

[Chris'Mom]

Clint, hoping your first day of chemo goes as well as it can...my son Chris started chemo (four round of EP) at this time last year....it's not easy, but he made it thru with not many side effects....just make sure when you come home you drink alot of liquids, even if you don't feel like it...make sure you keep up on all anti nausea meds...we were vigilant about that....the third round for Chris was the toughest...mentally and physically, but a year later he is doing great....keep up posted...Mary Ellen

[benp]

did your hair fall out?

heya,

i read a study (actually a doctor mate quoted it froma natural resource book) that showed people who took 1600IU Vit for the week before and during cisplatin didn't lose their hair. We found it too late for me to try it. Just wondering if it worked for you.

Also, your post is unclear as to whether you went the full 3 rounds. If so did you find no side fx thru the whole thing or just the first round?

On the Vit E i also note that max effect seems to be from a certain kind called succinate and the doctor/biochemist I got that from recommended 800Iu/day.

Also, I aasked the nurse about this vitamin business and she said they don't worry until as long as people are taking tablet sort of amounts. She said they get worried when people start doing IV Vitamins.

Finally, here is the regime my doctor mate came up with after researching and visiting 4 of Australia's best biochemists with an interest in this field as well a bunch of studies and books. I note that he didn't do this for me it is his area of research and interest (good friend to have) and he had collected this info over a number of years.

DAILY

Zinc: no more than 20mg
Vit E Succinate: 800mg
Beta Carotene: 'not too much'. I figure what it says on the bottle.
Vitamin C: 1-2g x 3 times a day
Selenium: 150micrograms during chemo then 100 thereafter
Lypoic Acid: bottle directed amount
Glutophyn: bottle directed amount

Vege juice is supposedly excellent too because it is easily absorbable and has flavinoids.
It would take me too long to type the reasons for each above but some of them supposedly cause apoctosis (where the cancer cell realises it is doing the wrong thing and kills itself).


Would love to hear other people's experiences on all this.


: b

[AdrianB1971]

Vit E + selenium

I took 400 IU daily + selenium during chemo and 3 months after, and the markers have normalized after first cycle. I have no side effects from chemo and therefore I agree that the HIGH doses of vit E + selenium actualy are boosting the chemo effect.
Vit E [min 400 IU] - for neuropathy
Selenium 200-400 microG - for kidney protection

[benp]

Looks like we're on the same timeline

Hey Clint,

I was diagnosed a bit later than you but had an RPLND on March 8. I'm starting chemo (3 x BEP) tomorrow too.

From what I hear the chemo affects everyone differently and it's wait and see. Have found heaps of info on these forums about it though.

As for the EP vs BEP debate I spent 4 days solid researching it as I love sport and would hate to stop playing. As you will find out Indiana supports 3 x BEP, MSKCC supports 4 x EP. I ended up choosing the 3 rounds of BEP on the grounds that :

1. Only 10% of people have a particularly nasty turn on the Bleo
2. Einhorn seems to think that 3 rounds of Bleo is not a significant danger and that the 4th is the killer (in most people). Actually his article sums it up best. http://www.aaoc.org.ar/revista/vol3/einhorn.htm
3. If you have a good Oncologist they will stop any Bleo reaction b4 it gets too bad
4. With 3 x BEP you get a total exposure to less drugs.
5. Probably most importantly I unearthed an Italian study showing that while the 2 regimens have similar outcomes up to 2 years, the 4 x EP seems to lose out in the longer run (2 to 8 years). It's just one study mind you. If you want it I can email it but it is a Powerpoint presentation and I dont remember where I found it online.
6. The 4th round of EP is supposedly the one that statistically causes the most side effects (Neuropathy I think it's called).


One more thing about chemo and side effects. There is a fair sized debate raging about whether ant-oxidants (mainly Vit A, C, E and Selenium plus Omega 3 fish oils) enhance or block the effectiveness of chemo. Certainly they seem to reduce the side fx and overall toxicity to the body. From what I've read it seems that in theory they should block the chemo (this is bad) but most studies show that cancer cells dont act like normal cells therefore they are still susceptible and possibly that these vitamins can encourage the chemo to work better (this is good). None of the studies is enough to hang a complete arguement on and since no one can patent vitamins it might be while before there is a study you can beleive in. Myself I have chosen to take none of this stuff in the on weeks of chemo and then take a whole lot of it in the off weeks. This is the opinion I came up with after talking with a research doctor and a naturopath. My oncologist didn't seem upset by it though apparently a lot are.

Anyway, good luck from down under mate and I hope we both have good news at the end of it all.

Ben