I have been treated twice for ovarian cancer. My last treatment ended in November 2010 with no visible sign of cancer on the scan. It is now back again and my oncologist says it is up to me if I have more chemo.
This is a difficult decision and I would like to hear from anyone who has been in the same position.
I am taking a number of supplements in the hope that they will help. I would also like to hear from anyone who has used alternative treatments either along with chemo or as a stand alone.
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linda4
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I have been having treatment since first being diagnosed in May 2007, but I did manage 12 months remission in 2008, before having to start again. My cancer was 3c and so far hasn't spread anywhere else, but I am now on the 5th different drug, (with occasional short remissions) and my onc says as long as my body puts up with it he will keep giving it to me. He doesn't like any alternative drugs, but I do try to follow an anti-cancer diet as much as I can..... I must admit, some times I wonder how long I can go on, but then I see the family and it spurs me on again.
You don't say where your recurrence is, or if it has spread anywhere else, these things woudl obvioulsy make a difference.
The cancer has recurred on my bowel and lung and possibly my liver, will know more when scan results are back. Like you I follow an anti-cancer diet for most of the time.
Hi Viv, it may sound strange but was glad to read your story as it gave me hope. I finished my surgery and treatment for 3c last October and have just had my first ca 125 follow up test with a reading of 47. I will be tested again next month with a view to a scan and more chemo. Did you have a choice of drugs for your second and later chemo's?
Thanks
Jane
Sorry to read of your predicament. I've been v lucky so far with no recurrence since ending chemo in July 2009 (3c, surgery Jan 2009). Just to share the information available on the Budwig flaxseed oil diet: home.online.no/~dusan/disea...
which might be helpful. Also, I take Transfer Factor daily, and have since diagnosis. My Onc also dismisses these things, but, as I say, I've been v lucky!
I think I would reject further chemo as it still (I think) affects my health/vitality now, but that's easy to say from here. If they gave you chemo, what would it be, and what would it be expecting to achieve?
I will take a look at both those links. I have heard of the Budwig protocol but have been following the Plant dairy-free diet, so there's a conflict but it may be time to try something different. As you say there is a lot of information out there and my head isn't in the best place to find it and make decisions.
There are 2 chemos for me to choose from - epotoside or topotecan (not sure of spelling) and I think they are just intended to buy me some time.
Best wishes to you too
Linda
• in reply to
Hi Linda,
I'm on Topetecan at the moment.... 5 days a week then 2 weeks off. Not to bad if the hospital is local, but mine is 30 miles away. treatment is only 40 mins each day, and not many bad side effects offcially- saying which I am lossing my hair after the first round! The fluid drained after the first 3 days, which was wonderful and far better than having it done in the day unit. I think when we get this far everything is only designed to give us time without the side effects the stronger drugs may have.
Isadora, do u know whether one can just have the linseed n cottage cheese without the full protocol. I can't see myself following such a strict regime for 5 yrs but if you don't, my understanding is that the cancer could come back with a vengeance.
• in reply to
See SandyL, below!
I think it's important to keep clear of the real NOs at the beginning, but people definitely relax. I've stopped doing it at the moment, but would revert straight away if worried.
Hi my daughter 54 has peritoneal cancer and its back after 1.5 years I am interested in helping her with diet especially with lots of fluid on her poor belly. I like your suggestions. You seem knowledgeable aboutdiet. Thanks and good luck.
linda4, what was ur ca? mine's clear cell and this is usually resistant to platinum-based drugs. I had surgery in Nov 09, was told I was cured but we discovered it was back in Nov10. Was having surgery but due to spread in abdo cavity, am not. I'm still feeling quite well n energetic and so consultant suggested that I wait. This is what I'm doing; carrying on til pain, appetite, energy etc get worse then I'll have carboplatin n caelyx.
The bigger than the gap betn chemo, the better. Also, the period is dragged out so that docs do not 'use up' all available drugs for the recurrences (which they expect unless a miracle takes place).
All the best. Do you have a good consultant that you can talk to easily?
My ca is only 95 at the moment but the symptoms are getting worse, the fluid on my lung is causing discomfort and breathlessness and I suspect it will need draining this week. In view of that I don't think they will delay chemo if I decide to have it.
My consultant has been great thro treatment but doesn't seem too happy now I'm pressing him for options.
Thanks for your good wishes, all the best to you too.
I am sorry you're facing yet another recurrence and I admire that you are searching for other answers 'besides' the usual treatments. I'd like to endorse one of Isadora's suggestions, i.e. The Dr Johanna Budwig protocol. I've been following this protocol, (albeit loosely) for the last 11 years. During that 11 years I have eaten the Budwig breakfast every single day but must admit I eat fish, chicken and turkey breast meat to provide extra iron as I tend to be rather anemic. Mind you, I follow the other rules rather strictly (most of the time ... I do have my weak moments tho')
I highly recommend you join this Yahoo discussion group to learn more about the correct way to follow this regime. When I first joined it over 11 years ago, there were only 300 members, as of today there are10,970 members all searching for answers just like you are now and I was 11 years ago.
BTW, I was diagnosed with Stage 4 Ovarian cancer in March 1999 with massive pulmonary embolisms. My Ca 125 was a staggering 9,800. This meant none of the 'usual' surgery - at least not right away, so I had 3 chemos (Taxol and Carboplatin) before surgery and 6 following surgery. After treatment was completed, I was 'disease free'. About 2 months after diagnosis, a friend sent me a Zapper (as per Dr Hulda Clark) as a gift. I've been zapping almost every day since then and believe it has helped me immensely. Do some research on the net and you'll find lots of info (good and bad of course). Make your own judgement.
Just after finishing chemo treatments I started taking Usana vitamin supplements. I was advised to not take vitamins as it would be counter-productive to the chemo treatments - so I waited until I was in remission. I take BodyRox multi-vitamins and Profavanol vitamin C. I believe they have helped me.
I hope you find this information useful. I do what I do to help keep the cancer away, and so far, whether it's due to simply 'good luck' or my 'preventative' measures, I'm continuing to be healthy. I never dreamt I'd actually reach my 65th Birthday (next month), or that I'd see all four of my sons married (only the eldest was married at diagnosis), or that I'd have 5 grandchildren (had none in March 1999).
You are doing the right thing to 'heal yourself' even if you decide to take on another chemo regime. Take care of yourself. Sandy.
What a lovely story! So glad you've had all those years to enjoy the family. I'm sure there's a great deal of importance in feeling good about what you decide to do, and feeling able to decide for oneself. The medics often get quite dismissive and sniffy when we start to take decisions for ourselves, and that can be so undermining.
I am stage 3C,diagnosed June 2008/operation Jan2009/chemo before operation and afterwards to June 2009.
I am aslo BRACA1 the genetic piece that aligns to breast & ovarian cancer -as is my aunt & my sister-so its mastectomies/hyterectomies all round as risk reduction strategies.
My Aunt has had 1 reoccurance in circa 8 years, in the bowel although her CA125 has fluctuated into high numbers & then reverted back on numerous occasions -to date I have not had anything further but given its only 2 years-early days for me.
My Onc will not treat any reoccurance on the back of soley CA results-he will only do so when supported by a visible tumour -so has had patients up in the 900 field which have then dropped back as CA125 can be heavily impacted by a number of things.
I tend to believe that the bigger the gap between chemo -the better as there is no evidence to prove that early chemo has better results than later -hence I guess the view of my onc.My aunt has had lifetime limits on some chemo drugs due to breast cancer etc -so that tends to influence what she does and I know any "wait" is awful re anxiety.
We both take 1000g Ginger and also high potency Tumeric daily-no idea if that has helped!
I am having chemotherapy as this is my third recurrence of ovarian cancer. I started with carboplatin and taxol but was allergic to the carboplatin so have just continued with taxol. The CT scan showed a reduction apart from one part. The hospital Marsden have now suggested I try the taxol and carboplatin overnight to see if that works better which I am going to do. I am feelng not too bad apart from tingling and pain in the fingers and feet. If you don't suffer too much with the side effects of the chemo I would go ahead and have it. I don't think there is anything to lose (apart from your hair!)
I was diagnosed in 1999 with stage1C. Had Cisplatin and Taxol after surgery then recurrence in 2001 and had carboplatin. Since then I have had 6 more courses of carboplatin and at present am undergoing my 7th course of carboplatin. My longest remission has been 18months but lately going 9 months from end of one course to beginning of present course. My Oncologist no longer checks my CA125 (as he says it is not a reliable marker) which was very high at beginning and has been up and down over the years. My recurrences to date have been within my abdominal cavity.
I do not adhere to any diet but have since my diagnosis taken Vitamin supplements,Aloe Vera and Omega Oils.
When it comes to making choices it is you alone who knows the effect chemo has on you and whether the hoped for benefit is worth the side effects. For me I have benefitted from repeat chemo and between courses enjoy life albeit with limited energy levels.
May God give you the wisdom in the choice and the serenity to accept the outcome.
Thank you all so much for taking the time to reply, I really appreciate hearing from people who understand what its like to be faced with this disease.
Sorry I haven't replied sooner but I've had to have a night in hospital to drain my lung. I will look at all of your supplement/alternative suggestions before I make my decisions.
Thanks again and good luck and good health to all of you.
I must tell you that with the Topecan the fluid drains away quickly. I know it is 5 days in a row, but by day 3 I can get back into my 'normal' clothes, rather than baggy tracks!
I know it is drastic, but if it contains the cancer as well as keeping it all drained through, and gives me a bit longer it's got to be worth it! Energy levels are low, and breathlessness is not much improved as yet, but I know the cancer in the ab cavity is pressing on the lungs, so hopefully I shall know it is working when I can walk a distance again. Mind you in this grey weather who wants to go for a walk!
make sure you tell the onc about the tingling, it is neuropothy (?), and can affect you permantley. I was taken off Taxol because of the affect it had on my feet. Mind you, all the other drugs since have also affected them!
I've decided to have this drug but for me it is going to be once a week for three weeks and then one week off. Not sure why there are different patterns for different people, might check this out with specialist nurse.
I will be very happy if it gets rid of the fluid quickly as it is one of the biggest problems for me.
Here's hoping for some bright spring days soon so we can get outside and enjoy them Thanks again.
Linda
(don't think you mean't to send the message below to me?)
My mom was just diagnosed with stage 4 Ovarian cancer. We found out because she had fluid on her lungs. They drained it and 6 days later it came back. They put in a chest tube and drained her lungs then used talc in the chest tube. The talc caused her horrible pain for a couple of days however we have now been 2 weeks and the fluid has not come back. She can breath again.
I have been told about this procedure and if the fluid comes back they will probably do it for me. I'm glad to hear that it has been helpful to your mom, I wish you and her all the best.
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Thanks again.
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