Maintenance chemo in the UK

I was diagnosed Stage 3c in June last year and finished treatment with my last chemo on May 8th. I had six rounds of chemo prior to surgery (when everything moveable was taken out on my instructions:))then four more after surgery finishing up with a two unit blood transfusion. My only symptom was abdominal bloating which turned out to be malignant ascites in large quantities!
I am in the UK and asked my consultant about maintenance chemo which seems to be used quite a lot in the USA but he said we don't do it here.  Do any of the posters from the UK have this treatment? I have my first post chemo consultation on Tuesday - I feel like you do after passing the driving test and you have to start driving alone!  I think the consultations are harder to face than Chemo!!

[rmarie]

Hi Echo, do you mean, your scans are clear, CA 125 is within normal and the active treatment phase is stopping?  These is some discussion in the literature about maintenance chemo, however, I don't know if it is routine.  I had surgery, OVCA stage 3 c has surgery and 6 cycles and was great for about a year, then had a recurrence, more surgery and now more chemo.  The scariest time for me, was stopping the active treatment, and going to 3 month follow ups, is that where your at?  If it is, ask about the follow up.  What is the plan?  How often are CA 125's and scans done, what would they do, if there was a rise in the CA 125?  How do they actively treat a recurrance?  Hope this helps.  All the best.

[EchoUK]

I haven't yet had a post treatment scan and don't know what my latest C125 is - I have my appointment with the oncologist on Wednesday. My treatment finished with the last chemo on My 8th..
Reading on this and various other websites it seems that a lot of people - mainly in America as far as I can see - have maintenance chemotherapy which in some cases appears to be ongoing after main treatment.  I asked about it when I saw the oncologist last time and he said they don't do it so I wondered if anyone elsewhere in the UK had maintenance chemo and what the aim of it is?

[rmarie]

I search the GYN/ONC literature and read the text books they state the standard treatment is 6 cycles of carboplatin and taxol.  there are reports of mainenance therapy of taxol continued for 12 months.  This was one study and the results indicated more study was necessary, however it was something that we could discuss with our physicians.  Taxol is the drug that brings the baldness and the peripheral neuropathy, so a year of it is a consideration - the majority of the women stayed on it for the year, the literature does not report there was much of an improvement in time to recurrance.  
    I am not sure, most of us are on maintenance therapy - my feeling from reading the posts, is that we were in a remission an the disease came back, and now are on chemo to beat back the cancer to stay alive.  I don't know if this helps or confuses you more, sorry if it confuses you more.  I do know how you are feeling about stopping chemo and going from every 3 weeks to every 3 months.  thoughts are with you, good luck

[Barney22]

Hi there - I asked that question too when I completed my first lot of chemo but was given the same answer as you.  My London based oncologist said there was little evidence that maintenance chemo worked in terms of preventing recurrence and of course it can use up its effectiveness for you individually.  I do know of a woman who had it under private insurance but I'm afraid it stoppped working for her after a few months.  It's possible that with the new drugs and combinations now in the offing that maintenance will become  different regimes and used far more.  I'm supposed to be on maintenance Etoposide at the moment after a combined intensive Cisplatin/Etoposide course but it's pretty tough and lasts about 4 months - wouldn't recommend it I don't think!  I remember vividly how vulnerable I felt when I finished my first chemo regime so I sympathise completely and feel for you.  However, the plus side is that you probably feel a lot better than being on maintenance Taxol or whatever.  Hope things go well with your results and clinics, love Jenny

[EchoUK]

rmarie - thankyou for your answer and your good wishes. Hope your treatment is going well. Are you in the UK too?

Jenny- Sorry to hear that you are having a bit of a rough time with treatment at present - hope you feel better soon.  There does seem to be quite a lot of difference - not only in individual treatments - but from country to country.
It is very confusing and the more you read about it the more confused you get!!
Do you take any of the supplements that are mentioned - like the Maitake mushroom or Vit C etc?  I suspect my consultant wouldn't be over enthusiastic about them but I will ask him.
I would like to know other ladies with the same cancer in my local area - it would be nice to be able to talk to someone in the same situation.

All the best to both of you,

Love ,
Ruth xx

[baguba]

Maintenance therapy is very controversial in the oncological field. In the past there has been no hard evidence to show that maintenace does or does not improve survival or eliminate recurrences. That was then; now many doctors are seeing things in a different light.  There have been studies that show that 25 per cent of women taking maintenace therapy can achieve a permanent/complete remission. I have just completed my 8th of a 12 month Taxol cycle of maintenance.  I was almost in my 5th year of remission when I recurred last May (Stage 1C).  I had a totally clean 2nd surgery to eliminate 3 small implants and my spleen, then 6 rds. of carbo/taxol.  My onc. suggested the maintenance program because she felt I would definitely benefit from it. If there was little evidence that it helped in first occurance, there was nothing to show results from taking it for a recurrence. But I decided to try it. She told me there was no wrong or right answer in this situation. It's an individual decision. I realize that I am compromising my system each time I take a treatment, and i do worry, but so far my CT scans are clean and CA 125 hovers in the 6 to 7.5 range. I pray this will work.  I hope this informaiton helps you. You will be in my prayers.  God Bless!  Judie :)