My Introduction
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Thanks for that Hazel, great news. Please keep us posted on how things go.
My best to you and your mum,
Gavin
Dear Hazel, FANTASTIC! Great news to wake up to on this side of the pond. I am so happy for you and your Daughter. That is all we really want is that little spark of hope and EVERYTHING changes! Now all the fright will turn to fight as your Daughter puts on her pink boxing gloves and kicks that CC to the curb!!! I am crossing everything I own, even my eyes for some good progress reports. Sending you the very best with big hugs as well!
Hi. Lainey, Gavin and Marions
It is great news that she can have chemotherapy. . She went to Christies and saw Prof Valle and as well as agreeing to start the chemotherapy on 18th of this month he is going to give her new CT scans and re-assess all her histology results.
He explained everything fully and inspired her with new hope and confidence that she can beat this awful disease.
Thank you so much for the links and providing all the information, but most of all, thank you for your support and caring.
Hazel
Hazel…..within the last 6 years, the majority of physicians shifted from “not recommending ” to “treating” resected patients with adjuvant therapy.
Data of the three below mentioned study will answer the efficacy question:UK: https://clinicaltrials.gov/ct2/show/NCT00363584
Do extrahepatic (hilar and distal) resected CCA patients benefit from adjuvant therapy with Capecitabine (Xeloda?France: https://clinicaltrials.gov/ct2/show/NCT01313377
Do extrahepatic (hilar and distal) resected CCA patients benefit from adjuvant GEMOX treatment?Germany: https://clinicaltrials.gov/ct2/show/NCT02170090
Do CCA (intrahepatic, hilar, distal) resected patients benefit from adjuvant GEM/CIS treatment?So happy to hear of your daughter’s improved state of mind. I bet you share her feelings as well.
Hugs,
MarionHi Hazel,
Welcome to the site. Sorry that I missed your post. Sorry that you had to find us as well but glad that you have joined as you are so in the best place for support and help and you and your daughter will get a load of that here from everyone.
I too am from the UK, up here in Dundee and my dad was diagnosed and treated here in Dundee with PDT back in 2008. You said that your daughter sought a second opinion from the Christie in manchester, was it Prof Valle that she saw? If so then he is very very experienced in dealing with CC and indeed sits on our medical advisory board here at the CCF. He has also treated quite a few of the UK members here on the site.
Did you hear back from Helen again? I agree with what Marion says about Helen, she is a star!
Please keep on coming back here Hazel and keep us updated with everything. We are here for you and your daughter and we care.
My best wishes to you both,
Gavin
AW, Hazel, much better news, I must say! Music to my ears. And I am so glad that your Daughter is feeling more up about it as well. I would say this is a good start to the New Year! Please do keep us updated as you are doing a great job. I have always felt that tapping things out on the computer was very cathartic, When first diagnosed one will start out walking slowly and before you know it your daughter will be running with the pack! Thank you so much.
My daughter saw the new oncologist yesterday with a much more positive outcome. He agreed that the potential statistical benefit of chemotherapy for CC was the subject of much debate but believed that until firm evidence is available to the contrary the patient should be given the option of chemotherapy. He fully explained the pro’s and con’s of chemotherapy and assessed my daughters physical and mental fitness to undergo the treatment. The outcome being that subject to satisfactory blood tests etc, she will start a 6 month course of oral Capecilabine later this month.
While not understating the seriousness of her CC, based on his review of her results to-date the Oncologist gave her a much more optimistic prognosis. He has also agreed to do a new full CRT scan and to review/reassess all her original Histology results.
In summary while understanding that she still has a long way to go she is in a much happier state of mind.
At this point she would rather that I continue to speak for her on the forum.
Hi Pat,
When my daughter arrives, later today, I will get her to read your post and all the others so she can make an informed decision.
Thank you all for showing the support for us, this is a brilliant site.
Hi, Lainy. I think you misunderstood my message. The oncologist is not going to offer chemo but she will get scanned every 3 months, to make sure she is clear.
She will see a specialist at Christys tomorrow, as she wants a second opinion., but on checking the Internet, he is part of the study, so maybe his answer will be the same.
Hazel, hello, I am a post re section survivor, and I was told basically the same thing, there is no effective treatment for my cancer, he did offer me the option of getting the chemo if it helped me deal with it mentally, but recommended that I forgo chemo as it will just weaken my bodies defenses. I chose to forgo the treatment, and things have gone well. Don’t panic due to this recommendation, it may work out well. You say her margins were clear, You trusted this doctor to cut you open and do things inside your abdomen, he performed a successful surgery and I am sure he, more than anyone else in the medical field, wants your case to go well.He did this operation and removed all the tissue scans showed. Do not panic or let emotions control you. Things can be fine just as they are, BELIEVE. Living in fear is a part of it. Let’s not kid ourselves, it will always be in the back of your mind from now on, especially before scans and doctor appointments. How you deal with the unknown is key. Try to be positive, and speak and believe positive vibe when you are with your daughter, anxiety is as harmful to the immune system as chemo, so positive support is very important. I wish your daughter the best possible outcome, Pat
Hazel, am I correct the Doctor just wants to wait a year for a new trial? No other treatments? UNACCEPTABLE if I read it right. You need to go post haste for another opinion. NO Doctor on this Earth is going to wait a year when someone has CC, I wonder how many CCers he has treated? Is your daughter his first? No wonder you are upset. If the Gem/CIS did not work there are other chemo’s he can try. I hope you and your daughter can take a long walk on the beach tomorrow as you really need to have a Mother Daughter talk. Looking forward to the outcome of your talk and hoping you can get to another Doctor soon.
Hi Julie, thanks so much for telling your story. Your initial surgery and the size of the tumour seems very similar to my daughters. I hope you are recovering well from your second operation, was it as bad as the first time? My daughter spent 2 weeks in intensive care as they could not control her pain, even the epidural did not work.
My daughters oncologist said there was no definite evidence to show that her sort of cancer would respond to chemo, so he wants to wait for the results of a trial that will be published in a years time.
Surely, for the trial to be a success some people are going to be offered chemo and some will not. I can”t help but wonder how they will get the results without choosing not to give chemo to some people.
What if the trial does prove that chemo should be used, but by then it might be too late for my daughter ?
She is coming to visit tomorrow and hopefully we will get to walk by the sea, that always makes us happy. I will let her read my posts and see for herself how positive this site is.
Take good care of yourself and try not to overdo things.
Hazel
Hazel,
The use of chemo after resection is a topic of much controversy. Since there is no definitive study to show that chemo can actually kill CC cancer cells, the use of adjuvant chemo (post resection) comes into question. Some doctors push for adjuvant chemo for CC resection patients and others do not. With most doctors here in the US , it is left to the patient to decide.
I had a resection for a 5 cm intrahepatic CC tumor also in my left lobe, Feb 2014, 20 months ago. I did 6 rounds of Gem/Cis chemo after that, which is the type of chemo most often used. It did some damage to my kidneys and left me with some neuropathy and possibly “some” hearing damage as well as some cognitive function damage regarding word retrieval. In Nov, 2015, my scans detected a 1.5 cm tumor had grown in an area adjacent to the previously resected area of the left liver lobe. That was resected on Dec 7th, this year. We don’t know if this was a rogue cell, or one of more to come. But, the doctors do tell me that they believe it was there at the time of the resection, but too small to be seen. While I would have rather not had any recurrence of the CC, the doctors seem to be optimistic right now that there is a chance that this may not come back again. And….if it does come back and is again operable, my surgeon said he would operate again.
So, the question is, whether the chemo was “worth” it. I would still do it over again, knowing what I know now, because I didn’t ever want to wonder, “What if.” It may be that there were other cells that were either killed off by the chemo or at least beaten back. We just don’t know how truly effective the chemo really is.
So, that is probably why you have run into the situation where the medical people are refusing to give chemo. There are going to be doctors who believe the chemo can potentially do too much damage without evidence that it does any good. Other doctors will actually insist that you do chemo after getting a resection. (as my doctors did the first resection) It may be difference in England, but that has been my experience here.
I hope that Helen can help you straighten things out for your daughter. Give your daughtere my best and tell her that I am pushing for her for the best.
Julie T.
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