I saw my oncologist yesterday, and as expected my CA125 has gone up again. The scan also shows that the peritoneum is now affected. He said that he therefore thinks that whether I have treatment or not will not affect the disease progression! It was a real body blow!
Since I feel well at present, I have decided to delay any treatment until I have symptoms as I didn't want to waste the next few months feeling unwell from chemo, especially if it has little effect on the cancer.
I will probably have weekly Taxol when I do start. Has anyone with cancer in the peritoneum had any success with this? I also asked for my latest blood readings and scan results, in case I decide to try the C O C. I have looked at what they offer previously, without being very convinced but am now thinking that I have nothing to lose. I would also love to hear from anyone on their protocol, who has found it to be beneficial.
Jenny
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Im so sorry to hear this, but surely lots of people have 3rd line chemo, why would Taxol or similar not have an effect ? I thought peritoneal cancer was treated the same as Ovarian and it would be considered the same not a second type?
Yes it is treated the same, but he said that when it spreads to the peritoneum the treatment is less effective. Apparently it affects the bowel which is where future issues will occur. He said I might have problems emptying my bowel.......Once that happens, things aren't looking good.
Hi, My mum had tumours on various parts of her peritoneum ( high grade serous ) and just had carbo chemo. After just 3 sessions some shrunk by two thirds! My understanding is it responds well to chemo on there? its a very common place to spread to! Dont know why Taxol wouldnt do a good job? x
Thanks for that, it's reassuring. It might be because I've had Carbo/Taxol with Avastin, Carbo/Caelyx and Rucaparib already. He seemed to think that Taxol was my best bet, but to try (?) to enjoy life for now until I feel I need to start chemo.
I finished 3rd line treatment before Christmas and had carbo/gemcitabine - has your oncologist not considered this combination? I was Stage 3 at diagnosis and my peritoneum and bowel were involved from the start (so I ended up with a stoma when I had my initial surgery) but it still proved effective and got my CA125 down to 21 from 400. I’m currently on Letrozole as I was diagnosed with breast cancer during chemo, but that also seems to be helping with the OC - CA125 was 17 this week.
Hi NumiInteresting that the letrozole is working. I had breast cancer and was taking anastrozole when I was diagnosed with ovarian cancer, but they stopped the anastrozole. Maybe I should go back on it or switch to letrozole 🤔
I was taking Letrozole when I got my OC diagnosis. I have Clear Cell OC and the Letrozole didn’t help me, but it may help other types, I know a number of ladies on here take it.
Hi Maybe it would be a good time to get a second opinion,while you’re feeling well?
I take coc (except the Doxycycline) and I follow Jane mcellands How to starve cancer,the book is quite tricky to get your head around but she does do an online course aswell,which may be easier.There is also on YouTube an interview she did with Chris Wark which is well worth a listen.
Yes, I have got Jane's book. To be honest I found it really difficult to follow, also the amount of tablets people are taking looked scary. I counted the number from a protocol someone posted on Facebook and it was about forty a day!
I’m so sorry about your consultant’s pessimism! I don’t get this since I had quite a bit of cancer on my peritoneum initially and a bit at first recurrence. I don’t understand why it’s less treatable than other locations. Maybe you should get a second opinion?
I think it's the fact that we now need to go back to drugs that we have already used. The cancer cells have gained a certain amount of resistance to the available drugs. I mentioned gem to him, but apparently he doesn't use it.
Hello yes I probably take around the same tbh!It’s because you are trying to block all the pathways the cancer uses to feed on.Especially at stage 4 when it uses all pathways to metastasise.I personally recommend giving it a go.I think something might be working for me,
Stage 4 diagnosed February 2020 Ned since.
I do not want to rush back onto chemo anytime soon so will throw everything at this.
Hello. Yes it’s not cheap ,but we are managing and if it helps it’s worth it.The majority of what I take are natural supplements which I get from Amazon,eBay etc .A GP prescribes the prescription meds for me.
Hello, your situation is pretty similar to my mother’s. Her recurrence was triggered when she started having horrid bowel blockages; found out cancer was on the bowels snd peritoneal. Caelyx with taxol managed to shrink and improve blockage symptoms but wasn’t comprehensive enough as cancer started to grow towards the end. Had a second opinion and started on gem taxol avastin combo which didnt seem to work after 3 cycles. Oncologist halted treatment before sourcing out other alternatives and tried Abraxene (similar to taxol) with Lenvima (taken orally) which seems to work as her CA125 goes below 35 for first time since reoccurrence after 3 cycles. So, please go to another doctor and not to give up!
sorry to hear this I am having my major surgery just over 1 week , and part of that surgery is peritonectomy , it's not something I had hear of much before .I do hope thingsget better forvyou x .
Have they offered you immunotherapy ?Chemotherapy did not get rid of my peritoneal metastasis and I was giving immunotherapy with Keytruda and Lenvatinib which is working better though I had pancreatitis followed by Diabetes Type 1. It’s over a year now with the immunotherapy and I have a few spots of metastasis in the peritonium still.
Hi Qi-gong, I am also on immunotherapy with PD-1 antibody (Cemiplimab)-a clinical trial. I was warned that T1D was a risk but at low percentage, so I am surprised to learn you developed T1D from the treatment. May I ask how long you were treated before you developed T1D? Was it sudden? I ask this because the trial team is following changes in pancreatic enzymes every week. If it were increasing steadily, I presume they/I would stop in fear of pancreatitis/T1D. I realize my question is a bit off the from 27-359 question, but I would appreciate it if you could answer my question.
Yes, T1D is a rare side effect but nevertheless can happen. I had markedly elevated pancreatic enzymes discovered 3 weeks after the first infusion of Keytruda although I did not have the symptoms of pancreatitis and felt relatively well and was only notified of it by the blood test. The next Keytruda infusion was delayed and restarted when the enzymes were going down.However although the enzymes returned to normal, I developed severe diabetic ketoacidosis 3 months later necessitating emergency admission to ICU. I have been on insulin since.
Although immunotherapy can help with fighting the cancer, it is not a walk in the park.
There can be many side effects and can be life threatening, but cancer with metastasis is also life threatening.
Thank you for your answer, and I am sorry about what happened to you. Yes, it is a choice between side-effects and cancer progression. Hope your cancer in the peritoneum is not rapidly growing.
The immunotherapy is helping to keep in check the metastasis in the peritoneum in conjunction with exercises and good whole food mostly plant based diet, meditation and mindfulness. All the very best with your immunotherapy.
Hi Jenny, From what you say I disagree with your oncologists view, I have never been free of treatment I had carbo/taxol with avastin front line then Caelyx/carbo which didn't work and made things much worse and I've just had weekly taxol for 5 months which sent CA125 down from 393 to 33 at my most recent blood test. You need a 2nd opinion why doesn't he use Gemzer? Please don't give up Sue xx
Thank you for responding. When you had the weekly Taxol, did you have cancer in the peritoneum? What he actually said was that once the peritoneum was involved, ladies on chemo tended not to do so well.
As far as I know it's always been in the peritoneom, don't challenge his views go and see someone else. Obviously it's not a good situation but I intend to keep fighting and the Taxol has worked for the 2nd time. I'm hoping to go on a clinical trial soon.
I was diagnosed in January 2020 and had 6 cycles of carbo/ taxol followed by debulking and 2 further cycIes of chemo. My first recurrence started in February 2021 and I had 6 cycles of calyx/ carbo. Second recurrence in the peritoneum and around the liver in January this year. I am now on weekly taxol. My ca125 has gone from 1600 to 79 after 5 sessions and I am no longer having any pre-meds as I don’t have any side effects. I feel well and I’m in no pain so I’m getting on with my life and taking every opportunity to enjoy my time. I’m optimistic that there will be something new to help us when we need it and I’m certainly not giving up.
Hi Jenny, I am not sure this will help your decision on whether to have chemo now or later on. I like you felt really well but I had to have an inguinal lymph node dissection in Dec 2020 for recurrence shortly after finishing maintenance treatment. My oncologist decided not to give me radiation in my groin as I had got a bad infection after the op. I had a Pet scan to make sure there was no cancer remaining after the op. It showed I had a cancerous node in my peritoneum so I started chemo in March 2021 Carbo/Gemcitabine & I am now on Gemcitabine only every 3 weeks. The node has continued to decrease in size since I started & there is no evidence of disease anywhere else so it's doing its job & I am delighted. The chemo was much more tolerable than front line Carbo/Taxol so I am very happy to continue on this treatment for as long as I can. At the end of the day you are the only one who can decide what's best for you but I just wanted to let you know there is also positive outcomes to having treatment straight away but whatever you decide I wish you all the best going forward Xx
I mentioned gem to my oncologist, but it is not available at my hospital, I don't know why, as it is the major cancer hospital in my area. The thought of travelling up to London, especially when I am not feeling well is not attractive. I would need to get a train and a tube, and travel alone.
Aw I am sorry to hear that 😕 I am not in the UK so every hospital must use different treatments. Maybe you need more time to discuss treatments & other options with your oncologist before you decide or as other ladies said a second opinion maybe. I don't blame you not wanting to travel either if your not feeling the best, this journey we are all on is hard enough as it is. I hope you come to the best decision that is right for you & please let us know how you are doing. We will all be here to help & advise you no matter what . Take care Xx
Taxol weekly is the gold standard. I had tumor on the liver and on the sigmoid and taxol knocked them both out. Whether to chemo or not is always an urgent question. 2nd opinion also useful Good luck and hugs from paris
I will have the treatment, but not until I get some symptoms. Another couple of months of feeling well is attractive. I am still being monitored every month, so can opt into treatment whenever I want.
Dear Jenny please get a second opinion so many positive posts on here and lm sure they will be able too do something for you. Keep positive Sending love & prayers for you. SheilaFxxx
You are not out of options! There’s another chemo: Doxil that you could try. Are you near any large cancer research hospitals? There are so many clinical trials that may help: Bi-specific antibodies, Antibody drug conjugates, Wee 1 inhibitors, CDK 4-6 inhibitors, Meck inhibitors, and a re-purposed antibiotic that has shown to be anti-cancer: Novobiocin. Ask your oncologist and Google these promising new treatments. He/she may not even be aware of them. I had one Gyn oncologist who I had to “divorce” after she told me that she didn’t have time to research and she admitted to not reading in over 10 years! She knew only conventional treatments and wasn’t interested in learning anything new. Best wishes for a successful 2nd opinion and a positive journey.
Sorry to hear you've had a disappointment ,it's always a blow when treatment doesn't go according to am ,. I've just had my sixth cycle for cancer that spread to my perineum , Carboplatin and caeleyx , prior to that I've had Carboplatin and paclitaxol, also Rubraca which didn't work for me.I'm fourth line , my ca125 was 155 before my latest treatment ,it was 18 after third cycle , hoping it will have reduced a bit more , weekly taxol was mentioned next after I have a break , I know this doesn't answer your question about weekly taxol ,but we are all so different ,what works for one doesn't for another, wanted to wish you luck , enjoy your time chemo free .Cheryl W x
It seems that we are on fairly similar paths and reassured that you are now in your fourth cycle of treatment. I am dreading the day they tell me that the treatment on offer is at an end!IIt sounds as if things are looking positive at present and hopefully will continue that way.
I'm dreading that news to Jenny ,at times I'm positive but others I'm very despndent and lose hope ,I think having a parp that didn't work has made it harder for me ,no long stable period .Wishing you well .
I am so sorry to hear this news. First of all, don't let any doctor tell you chemo won't make a difference and makevyou feel defeated. Secondly, ive had breast, ovarian, and primary peritoneal carcinoma 3 times, and never had any bowel involvement. 3rd line treatment does and can work and then you can go on a parp inhibitor to maintain the cancer growth. Peritoneal is treated exactly as ovarian as is effective. I didnt do taxol but i did do carbo/cisplatin and my ca125 went from 25000 to 24 in a matter of months and was in remission for 3 years. So dont give up, dont give in, fight the good fight as a warrior as we all have
I had it all over my peritoneum & bowel as well as ovaries … from the start, stage 3C. Cd u get a 2nd opinion? From an expert? Google Professor Jon Ledermann-obvz no guarantees but there may be options.Good luck
I do hope they can sort something for you . in my surgery next week I am having a peritonectomy , as well as hysterectomy and debulking surgery , and colysiytectomy. sending love . x
Jenny, just sending my best wishes for your treatment. My cancer spread to my intestines and the wall of my abdomen. The surgeon removed everything that she could see and I just keep hoping that my scans and blood don’t get worse. This cancer can be physically and mentally overwhelming sometimes. Just hoping that things will be on the upswing for you. Donna xx
I was diagnosed with stage 3c peritoneal in late September 2021 so I don’t have a lot of experience. However I have just had debulking surgery at Queen Charlottes hospital following an initial four rounds of chemo. I had carboplatin, paclictaxel and avastin. My ca 125 markers went down from well over 1000 to 128 at the last test in Januuary and the ct scan confirmed that the chemo had worked extremely well. It’s early days for me as I still have 2 more rounds of chemo to go. Please don’t give up. My oncologist is Neville Davidson at Stoke Mandeville an surgeon Christina Fotopoulou.
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