Stopping Treatment - Thoughts

nudgie · November 2006

I have posted on this, but would like more insight and advice. Short version of history: DX on 7/06 with Stage IIa NO/MO colon cancer. Tumor removed by surgery. Was told by Onc Doc that the FLOFOX Regime would be for insurance purposes in my case and help with survival rate, so I decided to do it. I began the FLOFOX treatment on 18 August 06. Treatments would be every other week for 12 treatments (6 months). As of 3 November I have had the following: Too much tingling in hands, feet, face, lips, tongue, had to have lungs and heart checked due to side effects, was in the ER due to a side effect with WBC booster shot of Neulasta and an allergic reaction to the Oxy drip. FLOFOX treatment was reduced by 20% across the board before 20 October, so the allergic reaction I had on 3 November was from the reduced dosage. Since I will not be getting the booster shots due to the side effect, my every other week treatment would probably turn into a 3/4 week treatment and don't know if the effectiveness would be worth it or even the side effects could be worse, don't know.

I am due for another treatment on 17 November, but am 99.9% I won't get it due to low WBC count, so I would be asked to return on 24 November.

At this point in time my mind is telling me to stop, but my husband does not want me to and it is hard trying to explain to him how the side effects are effecting me and how the future treatments will depend on my counts. My friends also think I should continue, but I am pretty sure my body and mind are telling me I have had enough. I have not spoken to my Onc Doc about this yet, because I already know what's he is going to say, due to clinical trails, studies and stats, the survival rates due increase, but they don't really give or provide enough information on how many Stage II patients were involved in the trails, etc. I am waiting on Vinny3 to provide me with the information he found.

YOUR GOOD ADVICE AND THOUGHS ARE GREATLY NEEDED!!!!

tkd3g · November 2006

Hi Nudgie,

Check your ACS e-mail.

Barb

shmurciakova · November 2006

Hi again,
I would write to Vinny again and ask for the info. You really don't know what your doctor will say, do you? Maybe you will be surprised. I am sure he/she will tell you exactly what the benefits are. There is also something called the cost/benefit analysis. So if the costs outweight the benefits it is not worth it.
The bottom line is that it is your body. I am sure your husband and your friends think they know what is in your best interest, but they have not been there! They do not know.
At any rate, I think your husband needs to be present when the doctor tells you that you have 3% better odds, or whatever it is, if you complete the chemo.
I know what I would do if I were Stage II, but it is up to you. You have to make up your mind. I think most peoples neuropathy improves after they complete their treatments, but I would be worried about that too.
Good luck and I hope you find peace of mind soon!
Sincerely,
Susan H.

betina61 · November 2006

Hi Nudgie, I am in a situation very similar,I am receiving the Neulasta once a week, but I have not have any bad side effeccts, I am getting another shot for te RBC, and about a week ago they put me in something called neumega which is for the low platelets, which is another problem that I have now, I had to go everyday for a week, and I felt the worst in my life no energy at all, so much fatigue and finally the worse itching all over my body,had onc appt. last week and we cancelled the Neumega, I already started a reduced dose by 20% last treatment and I am schedule for tommorrow to see if the platelets allows me to get the chemo, he did mention the same thing about the wating 3/4 weeks between treatment I hope this doesn't happen because it will delay the treatment, but I am willing to go until the end if God let me,I am stage3-a you are stage 2, so the desicion is yours.Hoping you take the best desicion.

vinny3 · November 2006

I have sent an email to you. I will try to post the articles I have read-at least the substance and what journals they are in. I will try to get my scanner working. In the meantime if anyone wants the whole articles send me an email with your fax number and I will try to fax (in the US-I don't think I can afford the fax costs for elsewhere). I saw my oncologist today and told her I was stopping. She said fine and said she had just been to a talk by one of the oncologists at Sloan-Ketterling and he is only giving 9 cycles of oxaliplatin. She said if I had gone there they would consider me to have finished the course of therapy.

****

Patrusha · November 2006

Like Betina, I'm in a similar boat. However, I am in the study of ALL stage II patients who are being given the Folfox treatment (I am stage IIB, though). I'd like to continue and complete the study so future stage II folks will have a definitive answer on whether chemo helps achieve more than a 3% success rate versus surgery alone. But, like you, I want to listen to MY body and do what is best for ME overall.

I do understand your husband's hesitancy but I think it would be a great idea to have him there when you have this frank discussion with your oncologist. When I get down to having that conversation, I am going to be pointed and direct and ask just who says that 12 treatments are the gold standard? Why not nine like Sloan Kettering supports? Why not six?

They'll probably tell me that the study is based on the arbitrary number of 12, but if my body tells me to stop, I am going to withdraw from the study and stop.

Hope this helps. Hang in there.

HowardJ · November 2006

vinny3 said:
I have sent an email to you. I will try to post the articles I have read-at least the substance and what journals they are in. I will try to get my scanner working. In the meantime if anyone wants the whole articles send me an email with your fax number and I will try to fax (in the US-I don't think I can afford the fax costs for elsewhere). I saw my oncologist today and told her I was stopping. She said fine and said she had just been to a talk by one of the oncologists at Sloan-Ketterling and he is only giving 9 cycles of oxaliplatin. She said if I had gone there they would consider me to have finished the course of therapy.

****

Hi ****,

I'd be interested in any information you find. If you post the reference (journal, volume:page) I'll look for the article(s).

Thank you!

Howard

Betsydoglover · November 2006

Nudgie -

This is a difficult decision and one only you can make.

However, you are "just" (not trivializing it, believe me) Stage II and thus you have some flexibility. IF you are at the point where the treatment is really getting to you, it might be time to quit. I am Stage IV and my oncologist stopped me before I got to the quitting point - all is good now. Being Stage II you are not actually sure if the chemo is helping (as opposed to being just insurance). In that case, if it really got to me, I think I would quit. (In my case, I was willing to press on to defeat Stage IV disease - my onc wanted me to take a break and then the break turned out to be long-term as all tests continue to show no evidence of disease. I never thought there was anything GOOD to say about Stage IV disease, but if there is, it is the fact that there is something to watch and maximum response can be judged by watching that "something" - in your Stage II case, it is more a judgement call than anything and if your body tells you it is time to quit, that may well be ok and something you need to listen to.

Betsy

spongebob · November 2006

Hey,nudgie -

Like I have said, listen to your inner voice. Sounds like it's telling you that you've had enough. As folks have mentioned, the FOLFOX only increases survability by about 3% - and you sound like you were a very clean stage 2. Save the big fight for if you ever really need it. Sometimes the cure really is worse than the affliction.

Be well.

- SpongeBob

changing · November 2006

vinny3 said:
I have sent an email to you. I will try to post the articles I have read-at least the substance and what journals they are in. I will try to get my scanner working. In the meantime if anyone wants the whole articles send me an email with your fax number and I will try to fax (in the US-I don't think I can afford the fax costs for elsewhere). I saw my oncologist today and told her I was stopping. She said fine and said she had just been to a talk by one of the oncologists at Sloan-Ketterling and he is only giving 9 cycles of oxaliplatin. She said if I had gone there they would consider me to have finished the course of therapy.

****

Hi Vinny, Do you know if Sloan stopped the Oxi after 9 tx's for those with stage 3 or 4 as well?
Hubby was going to quit after 4 tx but had 31/2 weeks off and this was somewhat better however his ANC was 1.6...so guess he'll need a boost soon for the white cells. I agree though, each person needs to know what course of action is best for them...in order to have quality of life verses the quanity....difficult decisions though...I'm praying for all of you...I too know there is a "Plan" for each person.

vinny3 · November 2006

changing said:
Hi Vinny, Do you know if Sloan stopped the Oxi after 9 tx's for those with stage 3 or 4 as well?
Hubby was going to quit after 4 tx but had 31/2 weeks off and this was somewhat better however his ANC was 1.6...so guess he'll need a boost soon for the white cells. I agree though, each person needs to know what course of action is best for them...in order to have quality of life verses the quanity....difficult decisions though...I'm praying for all of you...I too know there is a "Plan" for each person.

I should have gotten more details from my onc but it was in the middle of her day so she was busy. I will try to find out.

2bhealed · November 2006

hi nudgie,

i am not sure what Stage IIa means, but at the Mayo Clinic which is a major research facility, they do not do any chemo for Stage II or lower colon cancer. I know this for a fact since my oncologist was dx'ed with Stage II colon cancer and was relieved he didn't have to make that decision.

but you know what he IS doing? He is JUICING!! I gave him the name of Quillin's book (among others) and he juices! And he says, and I QUOTE! "JUICING WORKS!"

(caps are my enthusiasm)

anyway, I never did any chemo for my Stage 3 lymph pos colon cancer and I have been declared CURED!!! WOOHOO!!

Let me know if you want to k now what I did instead of the chemo.

Don't worry--I'm not selling anything!

peace, emily who just wants people to know.......the are other ways

Stopping Treatment - Thoughts

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