Staying positive and hopeful?

[katems]

Do any of you helpful and supportive ladies have any ideas about how to remain positive in the face of such a serious and 'scary' illness?

I was diagnosed early in Jan 2007 with stage 3c/4 ovarian cancer. My CA125 was 7,200. I had 3 rounds of carbo/taxol followed by suboptimal surgery and then another 3 rounds of chemo. CT scan then still showed tumour so I have just had one more chemo with another to come making 8 in all. The CA125 has steadily dropped but is still in the 500's and I do not think it will get much lower. My oncologist has intimated that I will just be monitored with 3 monthly blood checks after the last treatment but if I still have high numbers and evidence of tumour on a CT scan then surely I am not in remission? Here in the UK I feel that treatment is not as aggressive as elsewhere. I am trying to be informed so I can ask the right questions and be assertive.  

I am finding it really hard to be at all hopeful about the outcome. Sometimes I am just overwhelmed by it all and would welcome any advice.

Thank you so much.

Best wishes to everyone
Kate

[butterflytc]

sorry was diagnosed dec 05, stage 3c
what i do to stay positive? I make jewelry for cancer patients at local hospitals. I give it out for free as long as they smile, I know how scared they are, as I was there too. The work keeps me busy, and makes me feel useful, in making someone else bad day, a good one.

[butterflytc]

I agree with Nola, I allow myself to have bad days, ask for help from friends, bf, and sister when I am reallly sad, and then try to keep going again, I had symptoms for a full year prior to diagnosis, but ca125 was normal, by my request hysterectomy was done, and that was when they found my cancer. was debulked, 6 rounds of taxol, carbo, tumor grew through out chemo and no remission.
was told would be monitered every 3 months as I was chemo resistant. Was given less then a year. Still here, still fighting, and always looking for ways to stay strong and fight this thing. Doc's cant figure me out at all, and I like it that way. No longer able to eat solid foods, and on morphine for pain, but going to try a vegan diet of puree'd soups, also drink protein shakes as I have lost 46 lbs since last month. I will never give up the fight, and I hope all of you stay strong no matter what. Allow yourself the sorrow or ranting, and then find something to keep you going.
wishing you all the best

[nolabean]

No one can expect to maintain a positive attitude 24/7, especially not when doing battle with cancer. I certainly did NOT stay positive most of the time. I was a raving lunatic, vacillating between praying and cursing like a sailor. I think we have to behave in the manor in which our feelings dictate and the consequences be damned. You are fighting for your life and have every right to be positive, negative, nice, crazy, nasty, sweet.......any damn thing you feel like. I found it most beneficial to let those feelings out. Sure, my friends and daughter thought I was nuts some times, but who cares, this is YOUR life and no one elses. Do what you feel and LET IT ALL OUT!

[Helmar]

Hi Kate.... It's easy to slip into a little black hole with this disease, but I stay on top of it by staying busy... doing things so that I don't have time to think about it...like pottering in my garden, going out with family and friends, and travelling as much as I can. Just keep on the go. When I wake in the mornings, and I feel like I might think about the cancer, I jump out of bed and get going. Worrying about this stuff is a waste of time, as we don't have much control over it, so it's best to keep your energy in reserve for better things, than stewing about ovca. I was dx Stage 4 in Feb 04, so it will soon be 4 years, and although I've been doing chemo most of that time, I still have a good quality of life. I know it could be better, but my prognosis at the start wasn't good, so I feel blessed to be still here. Take each day as it comes Kate. and enjoy what each one brings you.
Re the high numbers... mine are also very high, but my Oncol. has told me on many occasions not to take too much notice of how high the CA.125 is.... if  you are feeling well, eating well, and can go about your daily life without too much bother, then the numbers are only secondary. I started off with a CA.125 of 9200 3 months ago... it's down to 7190 now, so that's a good sign, but I'm feeling wonderful, so I don't care about the numbers now.
I hope you are feeling well, and try not to worry about it all. It runs it's course, and with the help of your Doctors, you could go into remission anytime. We are all different.
Best wishes and hugs to you Kate.... from 40degC amd sunny DownUnder...

[carolyn4908]

My mother-in-law just had debulking surgery 11/28/07; CA 125 was 7200. Surgeon gave her weeks to live and hospice, or surgery as treatment options. She had 4.5 L malignant ascites removed at surgery in addition to tumors, organs, etc. She is stage IV still in ICU after 34 days. Weighs about 80 lbs. Has a PEG today; got a trach on 12/17 due to ventilator dependency. Had MI and huge GI bleed post-op that have complicated the prognosis. Surgeon can only offer carboplatin now b/c of her debilitated condition and MI, and that would be after 1-2 months of PEG feedings - if tolerated. We and nurses who care for her think that at 74, we should refuse further agressive treatment. Surgeon stongly disagrees. She had been symptomatic for 6-12 months (extreme weight loss, felt gut tumor - but didn't tell family, no apetite, bloating, impared short term memory).

Any thoughts for those of us who have to make a "God" decision? Have any of you got experience with side effects of carboplatin? What could we expect for her? She can not even sit in a chair and stares vacantly into space. Occasionally, she seems to track movement with her eyes and sometimes nods to questions.

Rose4908

[rmarie]

It is difficult to stay positive with this disease, however that being said I just get up everyday and enjoy it.  The fact that I have OC does not leave me, I am or was 3C and in my first recurrance, orginal diagnosis was 9/05.  The recurrance found by good fortune, so that is my postive.  I had surgery and am on my 3rd round of chemo, with 3 to go.  I had turned into an exercise nut before I was diagnosed and I continue to work out 5 to 6 days a week, at the moment I am not quite as good as I was before the chemo, however I think about beating my cancer while I exercise.  Do I cry, absolutely and I curse and swear, however for the most part I believe we all  have the made the chose to keep fighting and chose life and work as hard as we can to enjoy it, in our own ways.  We can only become stronger.

For the record, It is not uncommon for women in the US to have chemo before surgery, if their tumors are large also.  It aids the debulking.

Remember you are strong.  good luck and best wishes, we are all in this boat.

[Samantha UK]

Hi, my mum was diagnosed with ovca april 03 and is now having chemo for her 2nd recurrence. She has started to suffer with ascities and I am so scared. She has never been in pain (apart from chemo side effects). She has lost a lot of weight and has no appetite. She has also just started caelyx so I am hoping it will kick in and stop the ascities. Before her 2nd recurrence mum was on a clinical trial for tamoxifen. This does seem to have worked her count has dropped from the 800's to the 400's, but the ascities has started. Mum is no longer on the clinical trial but her oncologist has kept her on the tamoxifen because she said it does appear to be doing something, but it takes longer to work than chemo. What I don't understand is why they didn't give tamoxifen from the start ? My mum had to wait until her ca125 was in the 200's before she could go on the trial. If she had taken it straight away perhaps she wouldn't of recurred so quickly ? It can't be cost as tamoxifen only costs about 35p a day. Anyone suffering with ascities ? mum feels so week after the drainage.
Love Sam x

[katems]

Thank you for your reply re Letrazole.

I just feel if we can share information then we have a better chance of asking the right questions. I have read and heard that informed patients who take an active part in their treatment have a better outlook. Anything that helps......!
Good luck.

Kate

[CFK]

Kate
Re Letrazole - I asked my oncologist about this and he said that hormonal treatments are already used and I got the impression that Letrazole is just another of these - he certainly didn't seem to be overly excited about it (what's new?) He said hormonal therapies are used as a 'break' from chemo and also if other treatments have not worked. He doesn't know if my cancer is hormone sensitive - I think he was going to request details and hopefully will let me know when I see him on Monday. Even if hormone therapy is  suitable for me I think it would be quite a while before it is used as I have only had 3 Caelyx treatments so far and if it is working I will presumably have 3 more. I'll know more on Monday. Thanks for your good wishes - if I get any more info I'll let you know.
Best wishes, Cath

[katems]

Thank you to all who replied. I already feel better knowing that I am not alone in facing this illness.

SimplyStar, I agree with EchoUk about the timing of surgery here in UK. If you have advanced disease, it is very common to give 3 rounds of chemo first to shrink the tumour to make the operation more successful and then to give more chemo to 'mop up' the cancer cells that are left. At the clinic where I have my treatment, of the several women I have met, only one had surgery first and she presented as an emergency. I don't really know if it makes any difference in the longer term though.

CFK - hello from Herefordshire. It is really good to hear from someone else in Uk. Being in Scotland, do you have any information about Letrazole which has been in the news lately? I believe it is licensed and approved by the Scottish Medicines Consortium whereas NICE have yet to approve it. I asked my oncologist and she wasn't much help.
Hope all goes well for you on Monday.

EchoUk. Yes I did have a scan after 6 chemos still showing disease which is why I am having 2 more. I was postponed last Monday because of low counts so go next Monday instead for my last, she said optimistically!. I have another scan booked at the end of July and see the oncologist on 6th August to see what happens next.
Re a previous question - yes I am being treated in Hereford because they now have a gynae clinic and surgeons/onco's come out from Cheltenham. Its part of the 3CCN in Cheltenham which is where I had my op. Good luck with your next meeting with the medics. Do let us know how you get on.

best wishes and love to all
Kate

[EchoUK]

In my case I had chemo first to shrink the tumours and make them easier to remove also to dry up the ascites which I had in substantial amounts and which came on very suddenly.
It was less than two weeks from feeling fine and fit  to diagnosis!

[SimplyStar]

I am just curious about the practice of doing the chemo first and then the surgery and then more chemo.  Can you find any comparisons  between the surgery first then chemo?  

[CFK]

Hi Kate
I am in UK -Scotland- and I was diagnosed with 3c Sept 05. I had successful surgery and then 6 rounds of carbo/taxol - treatment finished Feb 2006 and at that time my CA125 was 22. It was 19 in April 06, 65 in July 06, 62 in Nov 06 and then when it went to100 in Feb 07. I had CT scan which found 2 enlarged lymph nodes. I have had 3 lots of Caelyx and feel fine - I have never felt ill at any time since diagnosis (apart from some side effects of chemo). I have just had a further scan and I will see my oncologist on Monday to see how things are going - needless to say, I am feeling quite anxious about that. I know that in the UK treatment is not so aggressive but opinions are divided regarding this. I know that my oncologist does not immediately begin treatment just because of rise in CA125. If mine had remained around 60-70 he would have maintained a 'wait and see' approach. I think a lot of emphasis is put on how you feel - if you feel well and have a good quality of life it is not always appropriate to start on chemo. I am fine with this because I want to be free of chemo for as long as possible so that my body can recover and is better able to fight in the future. Does this make sense? I hope things go well for you - I, too was very depressed at one time but there are so many women on this site who have been living with ovca for years that I have realized that it is possible to look at it as a chronic disease.
Very best wishes, Cath.

[EchoUK]

Hello Kate,

I was waiting for you to post your result and I am sorry that it has depressed you.  We are very close in pattern of disease but I am six months ahead of you having been diagnosed in June 2006. Have you had a CT scan recently and did it show disease? I believe the thinking here is to monitor the disease progression and to give patients a rest from chemo even if the CA125 isn't as low as would be preferred.  Then restart chemo if the levels start rising too fast.

My original CA125 count was 6000 and I had six rounds of chemo before surgery - carboplatin alone as I had a reaction to taxol - then four treatments of chemo after surgery.  My CA125 was about 230 before the last chemo and I will get the result at my medical in two weeks time but I doubt if it will be much lower. I had a CT scan last week. Apart from more chemo treatments than you had our treatment pattern seems to be the same. I had my last chemo on May 8th followed by a small blood transfusion.

I agree that there does seem to be a less aggressive action taken in the UK but I don't know anyone here (the UK) to compare notes with.  People don't seem so willing to share information as they do in the US and other places.

I will be very interested to hear the responses to your question especially from any UK posters so I can go in armed with questions but at present I must admit I am quite enjoying not having to keep planning around hospital appointments so much.  I seem to have almost lived there for the last year!.

Take care,

Luv,

Ruth