depressed to the max!!

JoyceCanada
JoyceCanada Member Posts: 134
edited March 2014 in Colorectal Cancer #1
1)Just finished round 2 of Oxiliplatin (folfox) round 1 was a breeze however round 2 I spiked a very high temperature 38.8C. Oncologist now says that I may not be able to continue this treatment. I'm really upset because I wanted to go for the most aggressive-progressive treatment available.
2) I was supposed to start my radiation/5FU treatment to-day but my blood cell count is way to low and it has been postponed until next week.

I'm so depressed and scared will the 5FU/radiation be enough to deal with stage 3 x 2 lymph node involvement. I had such faith in the oxi being the wonder treatment!!

I'm in tears - I'm not a wimp I told oncologist I can stand the side effects but she seems to think that it is just too dangeroud for me to be on Oxi...i.e. the "cure" could kill me!!

Comments

  • alihamilton
    alihamilton Member Posts: 347 Member
    Hi Joyce, I hope this encourages you. My husband was dx Stage 111C in July 2003 with 11 out of 18 positive lymph nodes. Here in The Bahamas, 5Fu/Leukovorin is the standard treatment for Stage 111 and he received 30 treatments in all. He started with once a day for 5 days, then two weeks off, then again once a day for 5 days. He did three cycles like that and then went abroad for chemo/radiotherapy. The last few cycles were more spaced out as he had some complications. However, he completed the 30 treatments and is doing very well today. Our oncologist feels that the oxaliplatin does not increase survival by much (I am sure many would disagree!) but if the oxaliplatin does not agree with you, then it is better you continue with just the 5Fu...as the oncologist says, no point in the cure killing you!!

    Try not to worry to much but concentrate on getting fit enough for the next treatment! It is surprising how quickly the blood can rejuvenate, so you should be ready by next week.

    Good luck!
    Ali
  • tkd3g
    tkd3g Member Posts: 767
    Hi Joyce.

    Sorry about the treatments. I had to stop the Oxiliplatin after 3 treatments. I actually told the oncologist that I was done with it. Too many side effects that were too severe. ( I had side effects that they hadn't heard of for that drug) I figured I was allergic to it or just very very sensitive.

    Anywho, I went on 5FU and Leuc for the next 6 months. Let me start at the beginning: 6 weeks chemo-radiation being on 5Fu continuous pump, surgery, 3 treatments of FOLFOX-6 then 6 months of 5FU and Leuc.

    I was diagnosed as stage 3 Rectal with a possibility of 2 nodes involved. ( after radiation, no node involvement was found, but there were a couple of hot spots on my PET scan before the chemo-radiation.)

    I am coming up on 2 years NED. My cancer was very aggressive. THe "very slow growing colorectal cancer", grew to a nice size tumor in less than 3 years!!

    If you still have doubts about the treatment change, consult another oncologist. But, be careful of the side effects. Some are worse than the disease.

    Best of luck,

    Barb
  • JoyceCanada
    JoyceCanada Member Posts: 134
    Barb: Originally I was diagnosed with a benign polyp in the lower sigmoid. Had resection (no problem with surgery) - however 1 month later at my post op check-up my pathology file suddenly appeared (seems it got LOST) and it showed that I had stage III x 2 lymph nodes out of 19 involved.
    As I said I have completed 2 sessions of Folfox and am now heading into 6 weeks of radiation/5FU.

    After this is over I want to get a PET scan and I have just contacted a provider $2,350 my health plan (Ontario Government) will not pay for this. So you can see I'm really upset because I seem to be having a run of bad luck with the medical profession.

    I'm determined to beat this beast I have too much to live for I'm a "young" 60..newly retired and ready to see the world.
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    I was diagnosed with stage 3 rectal cancer on 3/17/03. I had 5 weeks of 5 fu and radiation nd then surgery with 2 out 12 nodes positive. I was supposed to get 12 more treatments, but after 4 I had diarrhea so bad I ended up in the hospital and did not get any more chemo. I wanted more chemo, but was told it could kill me. I never had any oxyplatin it wasn't given then for stage 3. It has been almost 3 years and I remain NED. I kept asking all my docs, what if the cancer comes back. I was told that I had to remember that I did all I could. I just couldn't hande any more chemo at the time.

    Good luck and keep us posted

    Moe
  • JADot
    JADot Member Posts: 709 Member
    Hi Joyce:

    I am sorry to hear about your strong reation to Folfox.

    I'm 39, dx stage II colon cancer last December. Had surgery and am now on Folfox-6 because I had two really fast growing large tumors; so I am beging treated like a stage III.

    I've had 3 rounds of 5FU/Oxalip. I have peripheral neuropathy but almost no other symptoms - other than craving pizza all the time. In fact my red blood cell count and white blood cell count have both been growing in spite of the chemo. Between the 2nd and the 3rd chemo, my WBC went from 4400 to 5900. Between the 1st and 2nd treatment my HGB went from 10 to 12.9.

    My secret is a Chinese mushroom extract; it's used in China to support patients on chemo, to protect their blood making mechnisms, keep the hair in, minimizing nausea and prevent mouth sores. I am a total believer of this and my oncologist is now taking notice too.

    My 80 year old uncle in China went through radiation for prostate cancer and cancer in his bladder - his blood markers never went down and he was able to go through his entire regimen unmodified.

    If you're interested in this, please email me and I can give you much more detail.

    Best of luck to you!

    Cheers,
    JADot
    Ying
  • scouty
    scouty Member Posts: 1,965 Member
    Joyce,

    My 2 cents but I think Oxi is a huge ripoff with horrid side effects!!!!!!!!!! In the US, it costs $15,000.00 a dose even though it has been around for several years. The side effects are not worth it, in my opinion. No matter what happens to me, I will NEVER take it again.

    I am sure there are some that swear it saved their lives. I bet you a million dollars, 5FU has saved many, many more.

    In the mean time, do your research on how to help fight cancer with nutrition and supplements.

    Lisa P.
  • nanuk
    nanuk Member Posts: 1,358 Member
    There may be other options, such as reduced doses, bio therapies, etc. Ask your doc what else you can do.in the meantime, check out this site -some good http://www.facetheissue.com/depression.htmlnfo on depression.
  • RunnerZ
    RunnerZ Member Posts: 185
    Joyce,
    Have no fear!! I am a 7-plus year survivor of stage 3 rectal cancer and I had chemotherapy (5-FU) just before the newer agents became available. I, too, had suspected lymph node involvement (they were melted down by the time of my surgery by chemoradiation). I am 7-plus years disease free and considered cured. the older chemotherapy remains very useful and in some areas is the preferred course of treatment. My oncologist told me that the newer agents were promising, but that 5-FU was no compromise. Worked on me! I also ended up with a fever and infection from low white blood cell counts. With some medication they can boost that count and get you fighting ready! Don't worry (I know that sounds trite), but it sounds like you are in good hands. Take good care of your overall health and you will do great!
  • Lisa Rose
    Lisa Rose Member Posts: 598 Member
    Hi Joyce,

    First welcome to our CSN family.

    My name is Lisa Rose and like yourself I am a Canadian also. I was diagnosed over 4 years ago with Stage 3C rectal cancer. At the time of my diagnosis I had a large 2 inch cancerous tumor and 10 positive lymph nodes out of 14.

    When I did chemo it was just 5 - FU and that's been around since 1957. Plus I had 28 radiation treatments. Have Faith it's not uncommon to have delays due to ones blood count.

    Sending A Warm Hug Your Way,

    Lisa Rose
  • JoyceCanada
    JoyceCanada Member Posts: 134
    Lisa Rose: Thank you so much for your very kind encouragement. I was just so pleased that I appeared to be getting the "most-up-to-date" therapy with the Oxi. Your 4 year survival on 5FU/radiation gives me hope that it will work just as well for me. Thanks again.
  • kangatoo
    kangatoo Member Posts: 2,105 Member

    Lisa Rose: Thank you so much for your very kind encouragement. I was just so pleased that I appeared to be getting the "most-up-to-date" therapy with the Oxi. Your 4 year survival on 5FU/radiation gives me hope that it will work just as well for me. Thanks again.

    Hi Joyce...no...you are no whimp gal. If you were you could also say that you have a lot of friends here that are wimps also!
    Yah ever seen a grown man cry?...Well, this fella here has shed enough tears to make Niagra look like a small waterfall. No shame in that.
    As for depression Joyce don't be shy...ask for help at your clinic, try to see a therapist, clinical phsycologist cos it is a tough road and we all need to vent our feelings...this IS scary stuff and you don't need to feel depressed. I spent many hours on many occassions talking to a phsycologist about how bad I felt.These people are trained to deal with emotions. Sure helped me.
    huggs from oz, Ross and Jen