Saw my oncologist on Thursday after having finishing my last cycle (6th) of chemo and was told that the scan shows I still have a very small lymph node in my tummy area. He wants to give me 2 months break before putting me back on chemo, accompanied with Avastin. At first I was ok with the news, but the more I dwell on it the more sad and depressed I feel. I don't really know why, except I suppose I was hoping for a better outcome. I have decided to contact COC and see if they will include me in their trial using repurposed drugs a long with conventional medicine - has anyone here gone down that road and what was the outcome?
Also my left lung has been left with scars due to ascites which has left me with a dry cough and discomfort when breathing deeply - anyone else suffering from the same thing?
Thanking you in advance for any advice you can give me. Anne XXX
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I have often thought about the Care Oncology Clinic, but have not taken that route yet.
They seem to truly get remarkable results and can work alongside conventional treatment.
I totally understand how you feel right now. The relentlessness of this disease and the hard choices we are forced to make are daunting and I often experience a spell of depression before picking myself up and making the best decision possible under the circumstances and fighting on.
I always feel better when I am fighting.
We are all so different, reacting differently to treatment from each other, and this is obviously not an exact science, so asking for different opinions from us all, actually helps to weigh the pros and cons of the choices confronting us.
What kind of chemo have you just had and what is your doctor proposing next?
You made me feel so much better, what a lovely letter. Yes, I am normally a happy person - a fighter like you, but the results of this treatment knocked all the stuffing out of me. I was give Carboplatin and Paclitaxel again this time because I had had so much successful with these chemos the first time round and was in remission for 4 years. However, the first time round I suffered so much, ending up in hospital several time with infections of different sorts. So I was quite worried having them a second time, but my oncologist gave me a smaller dose and things went a little smoother, but not so successful!!
Well I have been out in my beautiful garden working, since I received your message and that is a good sign. I want to thank you Laura so much for your kind words, it has given me the necessary kick to continue fighting. Will contact the COC on Monday and keep you informed of how it goes.
The doc has not told me what chemo he wants me to take this time round, l think I need to use this two months' break to go on holiday with my hubby and may be a break with my kids before the winter and the chemo sets in again!!
So glad to hear you are also a gardener and get great joy from your garden. I even took on an allotment with a friend, in order to keep me busy and eat organically. Haven't had much energy, obviously, during the chemo infusions, but near the end of the three weeks, I usually got out there and managed to do something.
I also have bird feeders and take much pleasure in watching the birds, also have hedgehogs that I feed ever night.
These days I find that even just going out and having a meal with my husband or the kids gives me great joy, so I understand a trip to London, even if it is to go and have an infusion, is considered a holiday. So I wish you all best my dear. Take care. Anne XX
Hi Anne. When I finished frontline last January I had a quite large lymph node in my groin which we assumed was cancer. I was devastated. But I was able to get a Pet scan which showed it wasn’t cancer. Over the past six months it has been shrinking. So maybe you don’t need further treatment? Are they going to follow it? I’m sorry about the lungs. I have a bit of scarring too but it hasn’t affected me. Good luck!🌸
Thank you so much for sharing your story with me, unfortunately we always tend to see the bad side of things after we have been diagnosed with this horrible illness instead there can be other answers has you have discovered.
My oncologist has given me a two months' break so I can build up my strength again ready for the chemos and avastin I will probably need - who knows!!!
Will see my gp about the lungs - I believe there are rehabilitation exercise groups one can attend, which can help a bit - I believe there is no other solutions.
I'm following COC protocol. I started it because I saw a registrar for one of my appointments who basically told me that the cancer would come back whatever I did or whatever treatment I had. Possibly that's true but I was much happier with the COC's 'this is definitely worth trying!' approach.
When I started it I think my first recurrence had already begun to show itself, but I carried on with the drugs anyway throughout second line chemo. I would say I then had a pretty fantastic response to chemo (carbo/caelyx) with CA125 numbers halving after each infusion and down in normal range after 4 sessions. My scan after 4 showed that all the nodules, enlarged lymph nodes and peritoneal thickening was gone with just some free fluid remaining to be seen. I had one more chemo and then decided to stop at 5.
I'm continuing with the drugs now and hoping that they will keep things at bay for me for a while. I have no side effects from the drugs and feel fit and healthy.
My advice would be to read Jane McLelland's book How To Starve Cancer (and it's not a diet book!) which outlines the science and theory behind taking this combination of drugs, and go from there. Best of luck x
Thank you so much for sharing your story with me, very interesting indeed.
I find the comment of the registrar very upsetting and unnecessary - why are some people afraid we maybe eluding ourselves surely that is our prerogative if we so wish to do so.
Yes, infact I have read Jane's book and due to her I have found myself a nutritionist who has got me on supplements and a diet and the reason I am contacting COC; found parts of the book very difficult to understand, but well worth reading and re-reading. Also have joined her profile on Facebook.
Thank you very much for your advice and here's wishing you every success with the repurposed drugs, will keep you informed of how it goes with COC. Anne
I am also following the COC protocol having had a rather similar experience to Bluepeterella. At the end of chemo my CA 125 showed a small rise and I was told that the likelihood of recurrence was very high (I have clear cell OC stage 3b). Anyway I felt completely hopeless doing nothing about this, having finished frontline chemo, and decided to contact the COC as much to be feeling like I was doing something.
I’ve been on their protocol since about the middle of June. CA125 was up again in July but then down at the end of August - i think rather surprising my oncologist- so I’m hoping the COC protocol is working for me.
For me it’s definitely better to feel like I’m doing something rather than just sitting and waiting for the wretched thing to recur!
I’ve had absolutely no side effects from the COC drugs and feel well.
Happy to share any further details with you if that would be useful.
How I understand you so well and a big thank you for sharing your story.
I will certainly be contacting the COC despite the sceptic faces of my oncologist - my life not his and sitting around waiting for the next move is detrimental to our/my health!!
We spend so much time waiting for scans, infusions doctors appointments, researching and let's not forget results, that I tend to forget there is a life to be lived out there as well.
Any further details would be greatly received but will keep in touch and let you know how it goes and thanks again.
Best regards and good luck with COC protocol. Anne
Brilliantly put. I keep trying to get the Oncologist to ok the COC approach but he’s sceptical. Although he agrees that the science looks accurate ( but he’s only skimmed it).My GP is up for it though so it’s definitely my plan b.
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