Maintenance meds

Morning ladies,

Could anyone advise me , when you finish your chemotherapy treatments are you always put on maintenance medications?

I am due to have my final treatment ( for now) next week on the 26th. My oncologist said I will then be on watch and wait, subject to a clear scan, there was no mention of taking any additional meds and I just wondered if that is the case for other ladies.

Wishing you all a lovely weekend, it's a really lovely cold , sunny frosty morning!! I'll try and summon up enough energy to go for a walk !!

Lots of love ❤️

Jackie xx

24 Replies

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  • Hi Jackie

    I finished treatment in November and had a scan a month later. Scan was clear and at my oncologist meeting earlier this month was told I would have no more scans just blood tests before next appointment in 3 months.

    🤗 D

    X

  • Thanks D!

    It's amazing how we find out so much information on this forum isn't it ?

    Perhaps we should all become oncologists as a second job!!! 😳👌🤗

    ❤️ love Jackie xx

  • Hi Jackie, I think it is only after the second line of Chemo, and depends on what chemo you were on. I had no maintenance after first lot, but am now on Avastin after second. Enjoy the thought of ending your current treatment next week and feeling more normal again, If you do have to have Avastin it is all right, no nasty side effects apart from maybe a runny nose, I always have to have tissues at the ready. Good luck on your Journey, hope all OK.

    Jeanette

    xxx

  • Thank you so much Jeanette..

    It's such a comfort to know that one of us ladies will generally have the experience of what we are all going through!

    It's a funny ole place to be isn't it . I'm so hopeful for the future and I think that's the key isn't it, always looking forward, albeit very difficult at times..

    Well at least today looks bright and sunny ☀️.. lovely day for s walk ..

    Have a great weekend, and wishing you all the best for your future journey too!

    Love ❤️ Jackie xx

  • Hi Jackie

    I think it depends on what type of OC it is and what stage and grade. If it is/was oestrogen sensitive then a hormone blocker might be in order. As can be seen from the forum monitoring and maintenance does vary an awful lot between areas and oncologists.

    I am 1C1 mucinous and my oncologist wanted to watch and wait. As I was unhappy about this I asked for a second opinion from the Royal Marsden and they agreed with me for 3 monthly (for three blood tests) and 6 monthly scan reducing after 2 years. This is now happening. Mine is not oestrogen sensitive so no hormone blocker needed for me.

    Have they mentioned any follow up of any kind? Always, always ask why they are making the decisions that they do and the rationale behind that decision.

    Does your "watch and wait" include any regular tests or is it purely action only if symptoms arise.

    Fay

  • Good morning Fay,

    What good questions! I will ask when I see the oncologist on Monday .. just took it as read that I'm not watch out for symptoms, not sure on this at all as my OC only came to light when my biwel was totally blocked !! My oc is stage 3c .. not sure about hormone bits and pieces but will go armed with these questions on Monday ..

    Many thanks Fay, have a great weekend.

    Love ❤️ Jackie xx

  • Hi Jackie

    That is why I like this forum- ideas from all. I am generally not a pink and fluffy person when it comes to acquiring knowledge and action so am well armed in this direction. Please keep us updated. Enjoy the sunshine.

    Fay

  • Hiya!

    A lot of ladies seem to be on Avastin, but the rules have changed quite recently and the criteria is quite strict. I didn't qualify for it because I was 'optimally debulked' (I bloody hate that expression!!) and after surgery only had a bit of granularity to the peritoneum, nothing significant. You could ask your onc if you would qualify?

    Instead I have chosen to go down the private route and follow the protocol from the Care Oncology Clinic. I did a lot of research and felt that what they had to offer suited my needs, but not everyone may feel the same way.

    Yosh x

  • Thanks Yosh!

    I certainly have some questions for Monday... I too was optimally debulked 😳!! Resulting in NED.. having the usual 3 additional chemos as protocol states.. hopefully the scan will indicate a clear one 🎉.. mmm, question sheet at the ready !

    Love ❤️ Jackie xx

  • Hi Yosh. My name is Sherry & saying hi cos I am with COC too. Seeing them later this month. My CA125 was up to 10 from 8 last time, how about you? Do you feel good? My skin & hair amazing, but must admit, I have wind like one of my brothers some days!!!!

  • Hi Sherry! I've sent you a private message 😊 all good here too!

  • Hi Jackie,

    I was 1c, no maintenance meds,just a scan after chemo,internal gyno exam every 4 months and bloods every 4 months and another scan after a year chemo finished.

    I too think it depends on your type of cancer and if you have re occurred,

    Cxx

  • Hi Jackie I didnt have maintenance Avastin until my third regime. I am doing okay after it and back for check up end of March. If differs in areas and countries as well as in first chemo or recurrence. Glad you are doing great

  • Thanks Suzuki,

    It does appear that they use maintenance meds for second/ third recurrences.. I'm pleased that Avastin works work for you , it does seem that lots of the ladies tolerate this well ..

    Have a great weekend,

    Love Jackie ❤️️Xx

  • I am on Avastin and have been all through my first lot of Taxol and Carbo. 18 doses in all so about 12 to go. Sadly, I suspect the provision is more about funding than actual need! Several nurses asked me if I was waiting for funding to come through when I missed a time because of high blood pressure.

    I think funding for cancer drugs is going to be lessening as time goes on - have seen several comments in media about this intention by our dear government. Back to gathering herbs by moonlight!

  • I am still trying to get my head around all the terminology.........what does optimum debulked mean? I need someone to do me a list!! x

  • No, I am on nothing from oncologist as my insurance company would not pay for Avastin. However, I had already started the COC regimen & was feeling fab, so will continue forever if I still look & feel this well. Seeing them this month.

  • Hi Sherrym, can you advise me about the COC. Is it a private clinic and what does it offer and can anyone get an appointment there, and how does it dovetail with the NHS treatment that I might be getting?

    Phew, lots of questions I know, but I have never heard of it before.

    Jenny

  • I had surgery for OC stage 3C, then went to London & spoke to the Care Oncology Clinic. Took their regimen throughout chemo. Be aware that they are not government funded, these are repurposed drugs & not funded by any big nasty Pharma because there is zero in it for them!!! Sorry, my words, not COC/my small rant.

    Therefore, it costs for appointments, but a tiny fraction of Avastin.My wonderful GP totally onboard, even my oncologist says "mmmmm metformin has merit" haha, high praise indeed.

    However, I believe other off patent drugs have merit too. I also take quarter aspirin, cimetidine, q10, vitD. Onlu periodic supplements as my diet good, including plenty tumeric, pepper, ginger, parsley,dill. U name it, if I fancy it & it's purported health benefits, I grow it or buy it.

    Mad? Who knows but I am trying until it transpires I am sick again.

    Good luck

  • Thanks for the info. I want to be able to throw as much as possible at this wretched disease, just not sure I have the funds for private treatment. What does COC stand for, so that I can check them out on line?

    Jenny

  • I have no additional meds and am on watch and wait. The fact you need no top up is a good sign

    LA

  • Thanks Lily-Anne,

    I'll find out tomorrow what the plan is , certainly the last oncologist said they would put me on watch and wait .. can't wait for my last treatment on Thursday 🎉🍷..

    love Jackie xxx

  • I'm just over 2 years from my last treatment, no maintenance meds following clear CT at end of treatment. Just bloods and meet up with oncologist now every 6 months. Fingers crossed for clear scan for you too, big hugs ❤xx Jane

  • Hiya Jane,

    Gosh how lovely 😊.. it gives you so much encouragement when you hear of one of us ladies free from this bloody horrible disease.. long may it last !! 🎉🍾

    Love ❤️ Jackie xx

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