Please help - unique situation

[bjl]

Hi everyone,
I am a 26 year old male who has been battling cancer for a year. Up until now, I have been treated as a testicular cancer patient. I received 4 rounds of BEP (bleomyecin + etoposide + cisplatin) chemo, 1 round of TIP (taxol + ifosfamide + cisplatin), 2 rounds of high dose carboplatin + etoposide w/stem cell transplant, 2 rounds of oral etoposide.

On Friday I was informed two things: my cancer is terminal and it's probably a poorly differentiated adenocarcinoma of unknown primary.

I don't know exactly why, perhaps because my CEA marker has correlated with tumor activity, but my oncologist is planning to treat me with a common colon cancer recipe:

5FU + irinotecan + avastin.

I would like to hear your experiences with these drugs. I was told that they are more tolerable than the platinum based chemo I've experienced.

I am skeptical that the recipe will work at all on my cancer and I also feel like the chemo will significantly worsen my quality of life.

[rp1954]

You might find this paper useful: A long-term survivor of repeated inguinal nodes recurrence of papillary serous adenocarcinoma of CUP: case report

5'DFUR is not available in the US but Xeloda is essentially its dimer and considered more effective. Formerly PSK was the #1 cancer drug in Japan, a PSK equivalent is available as a supplement, a Coriolus versicolor extract, in the US. Cimetidine, $4 at Walmart etc, partially overlaps the molecular targets of Avastin and Erbitux against VEGF-A and EGFR signaling, respectively.

A lot of supplements appear compatible with 5FU based chemo compounds. This includes oral vitamin C and IV sodium ascorbate in high doses. Ascorbate neutralizes histamine which mediates VEGF-A formation. EGCG green tea extract, resveratrol, quercetin, curcumin, vitamin D3, low dose aspirin appeal to our experience among others. Celebrex is an interesting story beyond COX2 but the slight thrombotic potential is consideration for dose and timing.

There is less experience and more controversy about supplements and irinotecan or oxilaplatin.

[BrownBagger]

Pretty much anything beats oxiliplatin. I'm on Irinotecan and Erbitux, and don't have any significant problems tolerating it. What your oncologist is proposing sounds like a reasonable cocktail. Most of us have had some or all of those three drugs--especially the 5FU. And there are others that might work for you as well.

There are a couple of current threads discussing side effects, etc. of these drugs. You might check out "Snake Oil" for a more complete discussion of my current chemo experience.

Welcome to the Colon Club, BTW. Lots of good information here from people who have been there and done that. I would especially encourage you to read up on coping skills and strategies. You might get some renewed hope when reading about others who were deemed "terminal," but are still living decent lives.

As one of my doctors says, "With cancer, anything is possible." Don't write yourself off, my friend. You came to the right place for information and support.

[NWgirl]

I'm currently on Xeloda (oral version of 5FU), Erbitux and Irinotecan. The Xeloda causes a lot of hand/foot syndrome (red, sore skin on hands-feet - sometimes peels off) - but when I've been on 5FU it is considerably less. Both the Xeloda and Irinotecan cause me nausea - much worse when I have to have the irinotecan - it really kicks my butt for about 3 days. But then nausea has always been my troublesome side effect - so take that with a grain of salt. As brownbagger mentioned, he does fine with it - but then nausea has never really plagued him. Some of us get it, some of us don't. And of course mild to moderate fatigue from those two drugs, depending on what time in the chemo cycle I'm going through.

I've been on Avastin before - had no noticeable side effects at all from that drug.

I hope these buy you some time. I'm so sorry you are going through this.

[raym]

I was on that drug combination, but had the pill form of 5FU, Xeloda. I also had been on Xeloda alone during radiation treatments. Xeloda causes me some slight fatigue. It also can cause a condition called hand/foot syndrome. Hands and or feet get swollen and sore, sometimes they can crack. Right now it's tolerable for me..my hands are very sore but I can still do things. I just put a lot of pressure on them, like opening a tight jar lid. It can also cause mouth sores. For me I have no sores but my mouth is very sensitive to hot spices..even just a little puts in me in near tears.

irinotecan can cause gastro issues either diarrhea or constipation. It also can cause nausea. The first day or so after Irinontecan my stomach felt queasy, and that was with the anti-emetic - Aloxi. It also made me feel generally blah for a few days. And my hair got very thin (I buzzed it short) soon after starting Irinotecan.

Avastin can cause high blood pressure, intestinal bleeding, as well as not being able to have surgery or major dental work due to not being able to heal properly on Avastin. For me it caused a runny nose and nose bleeds.

There's a list of side effects for the drugs to be found on the web; I just listed my experience. Though out the chemo I was able to work full time, got out, get some exercise in (remodeled a powder room). I had also been on 5FU & Oxaliplatin in the past and I encounterd much more fatique and general feeling bad on that one.

[jeanette57]

ONTHER perspective. Get the paper work, get to SSDI - many states is automatic approval at stage 4. Sorry for this journey, going to the stage 4 group, we will surround you with love and support. Please send flowers to your parents or significant other and tell them just that you love them if yu can, find a funny card and smile. Take a deep breath and ask for help.
You are young, so hope your time is filled with a happy bucket list even if it is watching the sunset tonight!

[Rob in PA]

Ditto what brown bagged said...platinum sux. Folfiri was much more tolerable for me.

[WorriedWife]

ONTHER perspective. Get the paper work, get to SSDI - many states is automatic approval at stage 4. Sorry for this journey, going to the stage 4 group, we will surround you with love and support. Please send flowers to your parents or significant other and tell them just that you love them if yu can, find a funny card and smile. Take a deep breath and ask for help.
You are young, so hope your time is filled with a happy bucket list even if it is watching the sunset tonight!

Such a nice post jeanette57 - Just wanted to say that

Prayers for you bjl .....I wish you the very, very best!!!

[mstults]

You're young and that's a definate plus. I'm on 5-FU now. I agree that you need to do things you like however don't live every day like you won't have a tomorrow. You need normalcy as well. I hate the word terminal. Most of us are in some stage of terminal but we live, work and enjoy life. I do agree with the suggestion to get ssdi. Especially if you have insurance issues. I got on it a year ago in 15 days. You need hope and support. A positive attitude does wonders for treatment. A year ago my Dr said we can't cure but we can treat. I look at it as a diabetic has to have insulin. Granted chemo is harder than insulin but be sure you understand this. No one, including your doctor, knows how long you have. Don't spend 2, 3, 5 or 30 years dying. Spend that time, however much it is living. In the year Since my diagnosis I know 4 people that have died of brain tumors. When I was diagnosed they all thought they were healthy. I've seen people relapse. I have a cousin that's been on chemo 8 years. I intend to beat that and you can too. Do your homework and get the best trestment out there. Don't be afraid to get 2nd opinions. Dig your heals in and kick cancers ass. At your age who knows what new drugs will come online in the next 5 years. Good luck and keep us updated.

[Kathryn in MN]

You've had some tough chemo combos so far - the platinum based ones are the worst. In the CRC world, that is FOLFOX or XELOX (5-FU pump + Oxaliplatin or Xeloda pills + Oxaliplatin). Most people find FOLFIRI (5-FU + Irinotecan) to be a bit better.

For the most part without the platinum you don't get the bad neuropathy issues. Any of them can cause mild to severe nausea. Any of them can cause diarrhea, but Irinotecan is notorious for both early (as early as during infusion) and late (usually into the 2nd week of the cycle) onset diarrhea. It is also known for hair loss - severe thinning or complete loss. The other things like mouth sores and fatigue are pretty close between the drug options. Getting Atropine just prior to Irinotecan infusion can ward off the cramping and early onset diarrhea. Many experience increased secretions (runny nose, excess saliva, runny eyes) and Atropine helps with that as well. You may find a difference in what you can eat. On FOLFOX for myself, it had to be very bland and a soft texture, but on FOLFIRI I need flavor - sour, salty, spicy, and no mushy textures.

Avastin normally raises BP a bit - and that can be controlled by BP drugs. It also causes slow healing and can cause bleeding. (I had a couple of popped blisters on my feet once that took over 2 months to heal while on Avastin - normally would have taken a few days.) Many get bloody noses from it, or bloody boogers. By itself it really doesn't have too bad of side effects, but in combo with chemo, it can add to the fatigue. It is not technically chemo, but a monoclonal antibody, which is anti VEGF. (Cuts of blood supply to tumors) You have to stop this drug 4-6 weeks prior to surgery or dental work.

I hope this cocktail works well for you.

[jeanette57]

ooph -young one, forgot to tell you if you want kids - get your sperm saved before the worst chemo. An other women was sad her husband didn't abd now they can't have kids. Not something I think about, but need to know those things. sorry about the topic but if you want or your significant other need kids.

[bjl]

Thanks all for the support and advice.

I am seeking a 2nd opinion on if 5FU+irinotecan+avastin is the best route for my adenocarcinoma.

I am seriously considering not doing chemo. A lot of things on my bucket list require travel and chemo will prevent me from traveling. Also, my cancer is very aggressive and I may die quickly while on chemo anyway.

[scattered edge]

bjl - after reading your last post, I just want to tell you how much I admire your "taking the bull by the horns" - it sounds like you are living with this beast on your terms. Kudos to you!!

I was on Irinotecan last year and did NOT tolerate it as well as the oxi. I had 12 tx of FOLFOX and two of Irinotecan and it kicked my bootie. I am now on 5-FU and Avastin. Well... as of today, 5-FU/leucovorin only, seems the Avastin may be causing some issues - job security - for the GI guys they told the RN they didn't have any openings until September, she replied "That won't work" ... I should hear in a couple days when my appointment is...

welcome, and please know you have joined a heck of a good family here on The Colon Club ... yep, we rock

Rosie

[bjl]

well i meet with my oncologist tomorrow to go over chemo again and its possibilities. may also look into getting another opinion from MD Anderson, though it would be quite a trip.

[bjl]

Well I made it all the way to the infusion chair today before deciding that I did not want to start chemo today. I'm not even done with radiation yet- tomorrow will be the final treatment- and didn't want to pile chemo on top of radiation side effects. I also didn't feel that I had really personally decided to get more chemo- I felt that I was being pressured into it by family and my doctor. If I do more chemo, it has to be my decision.

For various reasons, this means the earliest I could start chemo is next week. But I don't care. I need some time away from treatment to physically & mentally regroup and decide what to do next. I basically went straight from my terminal diagnosis into radiation treatment and I feel like I haven't even gotten a chance to stop and breathe.