Chemo and other treatments

[coolzan71]

Hi everyone,
This is a question for those of you who are long term stage iv terminal survivors. I am an 8 year survivor who has been on chemo for almost 7 years. My question is what chemo have you been on, for how long and how many different types? Are you on non stop or do you take breaks? Also, how many tumors do you have (if any)? Also are your doctors willing to take care of small tumors as they come up or are they just relying on the chemo to do the job? I ask because I don't know anyone who has been in my situation. I have been on the same chemo the entire time and have had a small lymph node in my chest irradiated (with not a great outcome) and SRS to my brain for 2 tumors (with great success). Any info would be appreciated! Thanks!

Suzanne

[Amandatrrii]

Hey Suzann

Would you know anything about Irinotecan or 5-fluorouracil (5-fu) .. My mother age 63 was just recently diagnosed with stage 4 colon cancer 4 dime size lesions on liver she has copd and they are starting her on them 2 chemos. I'm just trying to learn more about chemo and this cancer especially with her copd it's scary.

[jhocno197]

You've been on the same chemo all this time? Wow! My husband is not a long-term survivor, and is now on his third type of treatment since beginning in February 2015.

[coolzan71]

Amandatrrii,

I actually have an enormous amount of experience with FOLFIRI (Irinotecan/5FU). That's the chemo I've been on for almost seven years. Usually Drs put us on FOLFOX (Oxaliplatin/5FU) first but my Dr gave me a choice and I decided on FOLFIRI. I didn't know it at the time but you can get FOLFIRI indefinitely as long as your body can handle it. Whereas FOLFOX can only be given a certain amount of times. I also have been receiving Cetuximab with my FOLFIRI since the beginning. My side effects include constipation (Miralax works great), very dry skin (Gold Bond Diabetic formula is fantastic!), hair loss (just thinned not all gone), EXTREME sun sensitivity (stay out of the sun if at all possible). I can still get sunburned on my face through a thick layer of zinc oxide. Of course I have nausea but don't vomit. I tried every antiemetic available and didn't find any combination that worked at all until maybe two years ago. I get a pre chemo IV infusion of Aloxi and Dexamethasone and an IV infusion of Emend. Then I take a compazine and a zofran which I continue to do every 8 hours for two days. Then i discontinue the compazine ( it causes me to have extrapyramidal symptoms) which I highly recommend you look up as it's a very scary and annoying side effect, I wish i had been warned about it. Then days 3 and 4 I continue the Zofran but add Emend orally. Then just Zofran until I'm feeling bit better. As you can see my biggest problem with chemo is the nausea. If I had to make one suggestion to your mom it would be to start her antiemetics BEFORE she feels sick. If you wait until you feel crappy they are less likely to work. As far as the COPD I never had any lung issues with FOLFIRI although I did lose half of my left lung in October due to radiation which has made breathing harder but haven't noticed that the chemo makes it any worse. Just so you know I started with 12 lesions in my liver and they told me I would live a max of 2 years WITH chemo. Well all 12 lesions disappeared and I only had a recurrence when I stopped chemo. I was diagnosed January 4th 2008, 8 years ago. So whatever bummer info they tell your mam know that ANYTHING is possible! Hell, I've run 7 half marathons since my diagnosis! All the best for you mom and I'm sending good cancer thoughts! If you have any questions let me know!

Suzanne

[Lund5505]

Not sure I would consider myself a long term survivor yet but I've been on lots of chemo. I started with folfox and avastin but had to eliminate the avastin due to super high blood pressure and had to stop the folfox after eight treatments due low platelets and neuropathy. I then had a chemo break to kind of recover for five months then did six months of folfiri and cetuximab. Stopped that because the bad days were out numbering the good. Took a break to recover and enjoy life for a bit. Then did xeloda for four cycles but my CEA was continuing to double every three weeks. Then tried irinotecan alone but had strange muscle twitching and uncontrollable diarrhea for two solid weeks. So I've done pretty much everything available except stivarga which I won't try just too toxic. I had over 50 Tumors in my liver at diagnosis and while they have reduced while on chemo they have never completely disappeared. At this point no one has offered any options to deal with the liver Tumors beyond chemo.

[rp1954]

That's the most Folfiri sessions that I recall.

One member here and CSN, luvinlife, extended her Folfiri-Avastin series with IV vitamin C and vitamin K3 into the 70s, by about 3 yrs past the point of quitting, but she was KRAS mutant, where vitamin C might be more favorable to Kras mutants. Some others have had intermittent chemo runs over 100 conventional cycles.
I've seen 2-3 long term conventional xeloda and maintenance users around 7 yrs wearing thin on chemo but didn't see many details.
One member at CSN went 6-7 yrs on erbitux and erbitux-irinotecan, after Folfox-Avastin, along with several surgeries. Current details a little blurry, he's out doing other things at ~11-12 yrs.
We're approaching 6 yrs daily oral chemo with too many adjuncts, natural and pharmaceutical, with excellent QoL and a lot of stability (nothing scannable yet), with some marker cycling. Two surgeries long ago. Probably mixed Kras or Kras cells eliminated from a single site.
There are various literature reports on oral chemo over 10 years, most reduced doses of xeloda in ADAPT in a clinical series.

Basically if your metastasis is reasonably under control or very slow spread, whether by adjuncts or not, going for the best physical removal of isolated mets or sites is a goal of many. Staying on some kind of adjunctive treatments, even if changed chemically, as close to surgery as possible has also seemed important.
The CEA and CA19-9 preop peaks often correlate with some adjuncts and experience.

[coolzan71]

rp1954,
Great info. Thanks! It's nice to know i'm not alone out there!

Suzanne

[wwroam]

Hello Suzanne

Thanks for all the info.
Tomorrow my SO will have completed her 26th cycle of Folfox + Avastin.
That makes it 21 cycles of Oxaliplatin and 23 of Avastin.
Her oncologist suggested yesterday that there may only be another 2 cycles of Oxi in her . He would then switch over to Irinotecan.
I'm not so sure . I see the ulceration of her throat from the Fluorouracil as a bigger problem. Side effects - wise, I believe that the Oxi is not causing any deterioration.

Regards
Wayne

[coolzan71]

Hello Suzanne

Thanks for all the info.
Tomorrow my SO will have completed her 26th cycle of Folfox + Avastin.
That makes it 21 cycles of Oxaliplatin and 23 of Avastin.
Her oncologist suggested yesterday that there may only be another 2 cycles of Oxi in her . He would then switch over to Irinotecan.
I'm not so sure . I see the ulceration of her throat from the Fluorouracil as a bigger problem. Side effects - wise, I believe that the Oxi is not causing any deterioration.

Regards
Wayne

Wayne,
I take 500 mg of L-Lysine once a day for the oral ulcers. One of my nurses recommended it when I first started and it had done wonders for me. It's just a supplement but is something I would ask the Dr about. BTW I will be landing in Brisbane in November for a vacay. Can't wait, I love Australia! Sending good thoughts your way!

Suzanne