Maintenance chemotherapy

[Mary]

I'm about to start what is typically termed maintenance chemotherapy and feel like it's the beginning of a slow but definite road. How has anyone dealt with this sort of process?

[BusyLizzie]

Oh Mary I do hate this disease! I am still on first line chemo at the moment, and since chemo #4 my CA125 has been going the wrong way, with a scan scheduled for next Tuesday. It looks like I won't get a remission and will be just straight onto maintenance/2nd line chemo until they run out of options. It is hard. I assume when you ask about how we have dealt with it, you mean emotionally? If you mean emotionally then I cry some days for an hour, but then find things to cheer me up. I like walking, spending time with my husband and am looking forward to a break in Scotland in October - it is always good to have something to look forward to, so I will plan another break after that. There are ladies on here who have defied the statistics, and I am keeping a referral to the Royal Marsden as my secret weapon once I think my local treatment is stumped where to go next. Also checking out whether there is any chance my cancer is genetic (with the women's genetic clinic) as my Father died of prostate cancer and I am only 45 so they think it could be genetic which may give me Ovarian trials I could try (PARP inhibtors). So that is another tip, have a few secret weapons as irons in the fire if you can. Other than that, have you read the anti-cancer book, that has some good tips, even if you can't do everything it suggests, it gives you some ideas and an inspirational story or two.

Love Lizzie

X

[sarah1963]

Hello Mary

I have had 3 lines of chemo without remission so although none of it was called 'maintenance' I think I know where you are coming from. I did get a whole year off though at one stage!

I am very much with BusyLizzie on this one. I am in my 40s and don't intend to stop fighting any time soon. I too am hoping a referral to the R.M. and PARP inhibitors will be a secret weapon.

I'm not really answering your question -how to deal with it? All I can say is that its just amazing what you can deal with. Don't let yourself get too down before you ask for help. Remember you will laugh and genuinely enjoy yourself again.

Being outside,especially in this weather, releases natural feel good hormones. And last but not least - shopping. I looked at curtain material this morning and I'm sure 20 minutes went by without thinking of cancer at all. Priceless in my book.

Love Sarah

[BusyLizzie in reply to sarah1963]

Sarah....we sound like twins!!!

Love Lizzie

X

[Hidden]

Umm, I don't know where you're being treated but I would be running for a second opinion, if you haven't already done so. Apart from the Royal Marsden, there's an excellent gynae cancer centre at University College of London Hospital, where they do lots of trials. There's also Leeds and various other places. Have you talked to the Ovacome nurses? they could give you lots of information. Also, apart from chemo, there are various other treatments, e.g. radiotherapy and possibly surgery. It could be that you've tried all these options.

To me, one of the worst things about this cancer is that unless you are already seeing an energetic expert, it's too easy to end up with an oncologist who isn't going to fight with and for you. There are some great oncologists around who will really go out and do everything they can.

I understand your feelings, but I think you have to be your own advocate - ask questions, make absolutely sure you have all the information before you make your decision. Having said that, I've heard of women who've had several good years on maintenance chemo, with a break every now and then.

[Heffmeister]

I got a second opinion straight away last year from the Royal Marsden. I saw Professor Gore, he is really nice and helpful. Just ask your GP to refer you. I've ended up going into his mEOC trial but am being treated at my local hospital. I've just stared my first chemo round aged 33 and intend to have multiple options open to me in the future to keep landing punches on this disease even if I can't kill it completely!

[Jazz]

Hi Mary

I have had ovarian cancer since 2001, initially I had five or six years remission, I am now on maintenance chemotherapy with five different courses of chemo in the last four years, with shorter periods of time between courses, currently I am on Topetecan for five days every 21 day period. I go to the Freeman Northern Cancer Care Centre in Newcastle, and they tell me there are still options availablein the future. There are some Oncologists who are now viewing recurring ovarian cancer as a chronic condition which can be treated when needed over a much longer period that was originally first thought, so it is not necessarily a disease that you only get one or two chances to treat.

I do feel every sympathy for you, I have over the years gone through the whole range of emotions, but all I can say that life is mainly good with just some fairly horrible interludes, but I am still here with my wonderful family and friends. A big hug to you. Jazz