High Dose Chemo HELP!!!!!!!!!!!!!!!

[Neals Sister]

My brother is currently going to be doing High Dose Chemo on the 2nd week of Oct. He was diagnosed in June 05 with stage III Nonseminolia TC. It was in the lymph Nodes and in the lungs, He is 4XBEP. Then it came back in Feb 06 Tumor markers at 206 and it was back again the nodes and lungs so they did 4X TIP. The it came back again here in July 06 just one spot in the lung and they were going to do surgery but they found that there was more than just one spot, so now they are going for High Dose chemo called I.C.E. His tumor markers are at 5000+
We live in Edmonton, Alberta, Canada so there are only these three ways of treating TC.
Can anybody help with some advice? Is it true that the tumor markers should be below 1000 in order to get good results from the high dose??
Thanks,
Kim

[Scott]

Kim, I'm so sorry to hear about all Neal has been going through. I hope he has already consulted with an expert in testicular cancer treatment, as it can make a big difference.

[Don]

I have been throught the BEP and the TIP and was told that I was giong to have to undergo High dose chemo with a stemcell transplant.. Never heard anything about the markers needing to be below 1000--My markers where at 13000- they decided to remove as much as possible surgically which worked so far. I never had to do the High dose.. Best of Luck to Your brother..

[Hopeful]

My husband went through high dose chemo/stem cell transplant last year in Indiana.

The general rule is that the lower the BHCG before starting HDC, the better. However, there are many cases where people went through HDC with numbers higher than 1000.

2 weeks before the HDC, my husband did 1 round of VIP, which helped knock his #'s down.

There are also other treatments too. If tumors are in the lungs, there are newer treatments, not part of the standard protocol.

Just take everything day by day and have good thoughts during the stem cell transplant.

Patti

[Lori]

My husband just finished high dose with stem cell transplant yesterday. It was a long 6 weeks but staying positive, drinking a lot of water and walking a little every day really helped him. If you have specific questions, please feel free to reach out to me.

I'm sorry for what you have to go through, but he will do well.

[Neals Sister]

High Dose Chemo HELP!!!!

Hi Lori and Patti,

Thanks for the quick reply! I was just wondering what kind of drugs did they recieve during the high dose chemo??
What were their tumor markers at before they started?
What were the doctors offering if the HDC didn't work. What after that??
What kind of outlook have the doctors given them before they started HDC as far as if it would work?
Where was the cancer at in their bodies?
Since we live in Canada the doctors have to go by the book as far as treatments, neal just finished 2 days ago what they call standard chemo it was for just 3 days 1st day cyclophosphamide and etoposide, 2nd & 3rd day just etoposide and that was just used to bring out the stem calls from the bone marrow and to kind of shrink the cancer. Did the dr's give you those reasons as before they started the chemo?
one dr said that this is going to work 100% for neal and the other 2 said he ha a good chance. Neals tumor markers have never been over 5000 since day one. But I guess that doesn't matter.
The cancer in the lungs has basically taken over the lungs and he has to be on oxygen all the time to breathe. The dr's said yesterday that there are massive tumors in the lungs and it is advanced. So neal will be starting HDC late next week.
Can you tell me somethings to expect if you can think of any?
Thanks a lot for you're time.
Kim

[Karen]

Kim,
I'm sorry to hear of Neal's condition. I can't offer advice on this, but will restate Scott's suggestion that you contact an expert for at least a consultation. Stay strong and positive. We're here for you....

[Hopeful]

hi Kim.

You should definately seek the help of an expert, especially with all your questions. Contact Indiana University in Indianapolis, IN or Memorial Sloan-Kettering in New York City. Those are the 2 major testicular cancers in the United states. Also, check out www.tcrc.acor.org and click on the tc Experts Page, there are about 4 doctors listed in Canada.

Ok, here's the answers to your questions.

1. Drugs during HDC - There's a bunch of drugs that are taken during HDC, it just depends on if there are any side effects and what they are. They do put you on Potassium and some other stuff to help your system. There's oxycodone, lomotil, and other ones. Drugs are usually easily accessible to help with the pain and the side effects. Kevin (hubby) had several side effects that other people didn't have. However, there are guys that have had some side effects that Kevin didn't have. this is very much a personal, individual journey.

2. Like I said earlier, this is a very personal journey and the same with tumor markers. I think it depends on the type of testicular cancer.

3. Other treatment options if HDC doesn't work. There are other treatment options available if the HDC doesn't work. But focus on this treatment first. If the HDC does work, then you don't have to worry about other treatment options. just take it day by day.

4. Kevin's tumors were always in his lungs, even in HDC. Kevin never had cancer in his lymph nodes because he was choriocarcinoma.

I can't tell you what to expect but all I can say is to focus on your brother but don't forget about yourself too. The one funny thing is when the stem cells are transplanted, your brother will smell like cream corn. and I kid you not. when kevin had his transplant, I dreamed about a Turkey dinner that night.

If you have questions or need someone to talk to, please send me a private message. I'll send you my # and email address.

Hang in there.
patti

[Lori]

Hi Kim,
Patti has provided some great information. This is a very personal journey. Jon and I are amazed every day how each man's battle is so very different. Stay focused on the treatment today and take a bit of time for yourself every day. Even just a 30 minute walk or 30 minutes to be lost in a book were always helpful to rejuvenate me.

We are under the care of Dr. Einhorn at Indiana University and I highly suggest you contact him. He is great with emails or call his secretary.

Jon's spread was through his lymph system from his stomach to chest to neck. So again, our husband's disease are quite different and I can't offer much in the way of information there. But Jon did well with HDC and I believe the hydration was a big factor. Jon drank no less than 64 ounces of water a day on top of the hydration they give you in the hospital. He also liked the drug Ativan - in small doses it helped anxiety but in larger doses it helped naseau.

Good luck and keep us posted.

[Hopeful]

Lori just reminded me of something else the IU nurses told Kevin and I when he was going through HDC.

If your brother gets a stomach ache, he should stick to the BRAT diet. It's bread, banana, rice, apple, tea, toast. It's the best thing for an upset stomach. Also, Boost and Gatorade will become a good friend.

Patti

[Neals Sister]

High Dose Chemo HELP!!!!!!!!!

Thank you all for you're info!

Neal has a dr that is supposed to be the best in western canada, but heis fairly rude when it comes to asking all these questions unless they are asked by neal.
Did they use the chemo drugs called I.C.E
Ifosfomide
Carboplatin
Etoposide
I recognized the drugs that you both stated but did they take these chemo drugs?
Thanks,
KIm

[kewlkane]

Tumor Markers shouldn't limit Treatment

Aloha Karen! Glad your bro has you & sorry he's for what he's going thru. As far as tumor markers at dx my bHCG was over 117,000 & my AFP was over 34,000. Of course if his markers were lower (ie less than 1000) his prognosis would be better, but remember prognosis is only a guess. My prognosis at dx (Jan 03) was "less than 1% to be alive in 12 mos" & I'm still here! Been thru the recurrence too & it's hard - tell him keep a POSITIVE OUTLOOK!!! I'm not familiar w/ tx options in Canada but know that Royal Hosp (or something along those lines) in Toronto completed TC study w/ Sloan-Kettering in 2003 contact them for second opinion & its OK to seek more info, if Doc's don't like then maybe time to change Docs. Only dumb question is the one you don't ask! Good luck!

[dadmo]

kewlkane:
Welcome to the forum. From looking at your profile you've had about as tough a road to a cure as anyone. Congratulations on staying positive and fighting the good fight.