I just really need any comments to help me out of a black hole! I recently completed 6 months of carbo/Caelyx chemo (first recurrence and Caelyx discontinued after 4 sessions because of ongoing bad side effects). After finishing I had an MRI and saw the oncologist about 10 days ago for the results. He said he was pleased as there was no progression. This seemed disappointing to me after such a gruelling regime, I suppose I hoped it would have gone. Then he said that if there is progression in the next 6 months there will be no other options to consider as it will mean I have lost the platinum sensitivity. I found this really frightening. Finally he has advised me not going on Niraparib (I’m BRCA negative) as he felt it would be too toxic for me. In truth, I cannot seem to get my head round all this, I am anxious and tearful so am turning to my Teal Sisters for any comments or advice. Sorry for the lengthy post! Wishing all the best to everyone. Carolyn x
Advice & comment please!: I just really need any... - My Ovacome
Advice & comment please!
Carolyn,
I am so sorry that you are feeling as you are. Your oncologist gave you a scare and naturally you are reeling. There is so much to process whenever we have new issues that it can be overwhelming and very frightening. Know however that you have come this far because you are strong and resilient and that your strength and resilience will return soon and you will go forth.
Though I know you are disappointed that your cancer did not diminish as a result of treatment, your MRI shows no progression for the time being and that is great news. You do not seem to be having treatment over the next six months so you can focus on strengthening yourself (nutritionally, physically and emotionally) so that IF the cancer grows, you can withstand additional treatments. If feeling well enough, you can focus too on family, on friends and on doing those things that make you happy.
I don't know the specifics of your treatments but I do know that for those with platinum insensitivity there are treatment challenges, but it does not prevent you from having any future treatments. I am sure the ladies here who have faced similar challenges will chime in shortly and share what they have done and/or what treatments have worked for them.
If your Oncologist cannot present you with a treatment (when the time comes) that aligns with your goals for the future, seek a second opinion (not all oncologists are alike in their thinking of what can/should be done outside of traditional treatment). Additionally, there are trials that you might qualify for if indeed, you run out of "on the market" treatments. All is not lost at this time.
Sometimes, especially when feeling overwhelmed, we need to stop for a moment and be present. Today, you are OK, your cancer is under control. You have time to explore options and talk with others about what's next. Do try not to imagine the worst possible outcome as you think about the future and instead focus finding a treatment that works for you.
We feel your anxiety and your fear and we empathize. Those of us who are managing well at the moment will take your burden and bear it for you. In the meanwhile, know that you are not alone, that there is help here and that there is love here. Sending you hugs.
Thank you so very much for your kind reply. I really felt you beside me. I wondered about trials but understand there is nothing suitable at the moment. I also heard about Iscador or Snowdrop Therapy which is widely used in Europe with success, but not the UK. All of a sudden I feel pushed off a cliff, but guess that after 7 months of treatment (Jan to July) I am low physically and mentally, so hopefully this will improve. I’m so pleased that you are managing well at the moment, long may this continue. Thank you again. Love Carolyn.
Beautifully written and I agree with Carolyn's words - you've managed to make it seem you were holding our hands. Wishing all the best to all xx
Sorry to hear your news and I am not surprised that you are feeling wobbly. I am a great believer in second opinions...your oncologist may be very good but it’s only one view of where you are. The advice about the parp inhibitor is odd really...as it isn’t the same as chemo... how would they know if you can take it without trying?
Give yourself a pat on the back for getting to this point and then have a think about what you want to do next. Sending love xx
Hello Lyndy. Thanks so much for your reply. The oncologist said that Niraparib would be ‘too toxic’ for me and would be a problem with the bone marrow. I had filgrastim injections over 5 days after each chemo session to boost my immunity as sepsis was a risk. It is just all so scary. As for a second opinion, I really don’t know where to start! Thanks again for your advice, so much appreciated. Love Carolyn x
My Oncologist in Bath recommends the Royal Marsden for a second opinion.
I do not know where you live, but a little research and recommendations on this forum should point you to a cancer centre near you.
Keep up the fight,
Laura
Hi Carolyn. I am sorry you are feeling so bad and I wish I knew enough to give advice. From my rather short experience, oncologists have different ideas on treatment, when to give it and when the risk is to high, and very different ability to provide hope. Maybe you can ask your nurse about how to get a second opinion? Hopefully your cancer remains sensitive to platinum, but I completly understand you need to feel you have options. Carboplatin is hard on the bone marrow (I have been low in wbc for a long time now even with filgrastim) but couldnt you get some time to recover before having to decide on Niraparib? I hope you feel that we are many here who care and wish the best for you. You are not alone and with some time to recover from chemo you may feel stronger again. 💕/Lisa
Hi Lisa. Thanks for your kind reply. Sadly I do not have a CNS but am seeing a lovely palliative nurse tomorrow so could ask her some questions. I have felt so alone with these worries (despite a wonderfully supportive family and close friends) so knowing you are all out there truly understanding and caring is wonderful. It has taken me over a week to feel able to post! Love Carolyn x
Hi CarolynA, off course you will be feeling wobbly, look at what you have been through and how strong you have been. All of us have been wobbly and sad at some point so we can understand and empathise with you and remind you that this will pass. It sounds like your oncologist has given you an overwhelming amount of feedback which anyone of us would find difficult. Please remember that we are here for you and want to send you big warm hugs and positive vibes when you are feeling down. You need time to gather your thoughts and consider what has been said. Could you go over it and write down what you want to know then sit down with your oncology nurse and discuss it? I would also ask her about getting a second opinion. Perhaps you could use the helpline here when you feel up to it. If you continue to feel anxious or depressed medication from your GP could help you. You are fragile just now but this will improve and you will be clearer about decisions when you are stronger. Please remember you are not alone and plenty of us have been given unwelcome news then found ourselves living a good life many years longer than predicted. There is a whole army of friends here rooting for you and thinking of you. Please keep posting and let us know how you are. With lots of big warm hugs and love
pat x x
Hi Pat. Thank you for your kind message. It really has been helpful. You hit the nail on the head with the amount of feedback I was given, I felt like a startled rabbit in headlights. Just knowing that others really understand and care has brightened my day already. I am seeing a palliative nurse tomorrow so will prepare some questions today based on the suggestions from all you lovely ladies comments. Hope you are keeping well. Love Carolyn x
Hi Carolyn. I'm not a medical person, so can't comment on some things said above but I do feel strongly that you shouldn't let this rest. What stage are you?
I'm stage 3c BRCA neg. I also had carbo/caelyx (6 months) for 1st recurrence. The caelyx is a bugger of a drug but mostly gets good results. I was finding it just too harsh after my 2nd infusion, so my onc reduced the dose of the Caelyx by 10%. Still tough, but I coped after that and it has given me a good remission. There are other people on this site who I've read have been given larger reductions than my 10%.
Correct me if I'm wrong folks, but I don't think you can expect that the carbo/caelyx (or any other drug for that matter) can completely wipe out all signs of your OC. No progression is what you're hoping for as that means the chemo drugs have stopped all tumour growth. The growths that existed should now be "calcified" (I think they show as white on the scans: the chemo has rendered them inactive). Sounds to me by your post that you have achieved that. The only bit you didn't get is the remaining 2 caelyx infusions at a reduced dose to make it tolerable for you.
Also, Nariparib, if I'm right, was initially only used for BRCA pos women but now also used for BRCA neg. Again, can people out there back me up on that?
Hope this helps (and makes sense). Best wishes. Pauline.
Hello Pauline. Thank you for your really helpful and informative reply. I am like you, stage 3c, BRCA neg. I found Caelyx dreadful, was hospitalised after the first dose, so it was reduced by 20%, and finished it after no.4 then had two more carboplatin. Your explanation about growths being calcified makes sense and has helped me see the situation now in a more positive way. How are you now? And do you take Niraparib? Wishing you all the best and thanks again. Love Carolyn x
Hi again Corolyn. Yes, I agree, Caelyx was v difficult but in the long run it was well worth it for me as it got me into a good remission. But it looks as if yours was worse. No, I've never been on Niraparib but a lot on this site have. Perhaps I'll get that next.
I'm doing remarkably well. I had avastin along with the carbo/caelyx, the avastin continuing as maintenance after the 6 rounds of chemo finished. Well, it's still continuing. It's been a god-send for me but after 5 years, seems to have done it's best for me. One tiny new growth is showing on my last scan and my ca125 went up by 11. However, the last couple of times I've had an avastin infusion, my CA125 has returned almost back to where it was. So not sure what to make of it all but I've had such a good run, I've no complaints (I was diagnosed Nov 2011). Good luck with it all. I do hope it turns out as good for you as it has for me (I'm fit & well). Best wishes. Pauline.
Thank you again for this. Is Avastin the same type of drug as Niraparib ie a Parp inhibitor? Did you have any side effects? I shall be asking about this tomorrow. So pleased to hear that your CA125 has returned to normal. Carolyn x
Back again Carolyn. No, Avastin isn't a parp inhibitor but it has been widely used for OC and other cancers. Opticians use it too. I've been very lucky that my side effects have been next to none. I just get a runny nose, mostly in the mornings and it ever so gradually raises your blood pressure (I need medication for that). It's not chemo, so it doesn't make you ill. I have my infusion 3-weekly. I have a port in my arm, so I don't lose veins to needles and the wonderful thing is that I just get on with life. I heartily recommend it but not everyone has been as fortunate as me with so few side effects. Why have I been lucky? I can only think that it suits my DNA. But as said, after 5 years, I think it's coming to the end of its useful life for me. Good luck to you & best wishes. Pauline.
Thanks again, Pauline. I love that you have written that you just get on with life. I felt I was on a slippery slope and had just had my last birthday! So you are giving me encouragement not to give up. Thank you, and all best wishes for good health continuing in the future. Carolyn x
Back again Carolyn. I know that slippery slope feeling. Here where I live, we have beautiful purple flowering trees (jacarandas) that come into bloom in November. They were blooming when I was diagnosed. I was in total shock & bewilderment at the time and thought I'd never see them bloom again. Well, not only have I seen them bloom but I've also seen both our children marry - just the best spouses - and we now have a 9-month old grandson.
Try to keep your spirits up, we're not all statistics.
Pauline xx
What a wonderful, sensitive and uplifting message. I can almost see your trees! So pleased you’ve seen your family grow. I hope I do the same. Thanks again. Carolyn x
I think if I were you I would obtain a 2nd opinion. I have read other ladies on here that have had weekly taxol for recurrences and have said it is much easier to tolerate. Plus
your oncologist is only guessing that Niraparib will be too toxic for you, he cant possibly know for sure until you try. Please don't let your oncologists negativity upset you. I am platinum sensitive and one registrar said to me "it is difficult to treat" which upset me greatly, and then a lovely lady on here pointed out " difficult but not impossible" stay strong and prove them wrong! x
Hi Lyn. Thanks for your support. I am sorry you have had upset too. I can understand that oncologists need to be honest with us, but upsetting words just does not help. I will remember your words ‘difficult but not impossible’. Thank you. Carolyn x
Did you mean platinum resistant? Platinum sensitive is easier to treat.
How platinum drugs are infused can add to "platinum resistance". This is a problem that can occasionally be reversed with timing and proper preparation. I think that patients are sometimes told this in error. Please get a second opinion.
Hello. Thanks for your interesting reply. Does the timing and preparation relate to the drug or the administration? Goodness, there is a lot of information out there - thank you! Hoping that you are well. Carolyn x
BOTH. The dose is based on body weight and mass initially, but these toxic drugs affect each of us differently. Oncologists have latitude to adjust the concentration/dosage. The infusion speed, dosage concentration, plus pre med steroids, anti nausea meds, saline solution before hand, all affect your body's ability to tolerate the drug. There is MORE to this, but my doc tells me he varies chemo drugs for each recurrence to preserve the drugs efficacy life. It is different for each patient. Get a second opinion from an oncologist known to be a strong patient advocate. I had a very burned out, detached oncologist during breast cancer and I fired her. Remember, you are a CUSTOMER and deserve the highest quality care!
Thank you again. Its all useful information. I, too, had breast cancer and finished with radiotherapy the week before I started with ovarian cancer! What a rollercoaster. Best wishes Carolyn x
Has your OC tumor material been tested for BRCA? Very, very important! It is not uncommon for advanced OC patients to have acquired (somatic) BRCA! That creates additional treatment options. If you are somatic BRCA then Olaparib is an option for you. I was genetically tested for hereditary (germline) BRCA when I had breast cancer and told I didn't have it! 🤗🍀❤
Hi again. First of all thank you for sharing all your profile information. It is inspirational what you have gone through and achieved. I have been tested for the BRCA gene (negative) but don’t know if this has included the tumour material. So that’s another question for tomorrow! Thank you again. Best wishes Carolyn x
FYI, I had to push and make noise to have tumor tissue genetically screened/tested! My doc waited over 3 years to do this! Results may take a few weeks to get. If you don't know to ask for this, it might never happen and your treatment will not match your tumor genetic profile. It angers me that we have to become cancer detectives in order to receive proper treatment.🙄🤔😯🤯
Lovely go and get a second opinion, did he say if the cancer had reduced in any way at all? Xxx
Hello. How kind of you to reply at this time. I was so sad to hear your news recently. Two of the three areas being treated had reduced which, in fairness, he was pleased about. But the negativity of the other issues has really poleaxed me. Sending love and thanks again. Carolyn x
Hi lovely,
Only just seen your reply as I've stopped updates from the website for a while so will now only be popping in occasionally. Its good that it's reduced but should a reoccurrence start and he gives the "sorry there's nothing else we can do" line seek a second opinion, the amazing thing with this family is we all share our experiences, if it wasn't for some ladies on here we wouldn't have known about Niraparib and it gave Cindy an extra 11 months of life which I'm very grateful for as it got her to see 2 of her grandchildren start secondary school and her youngest grandchild finish nursery, something we didn't think was possible. Xxx
Hello again. I am so pleased you keep popping into the forum though it must be so difficult. I do hope you are getting the care and kindness from others that you have so frequently shared with forum ladies. And I am so pleased to know the Niraparib made such a difference for Cindy. That must be comforting for you and is so helpful for me. Take care and be kind to yourself too. Love Carolyn xx
Dear CallmemMum, .
how good it was to see your name in a post at this sad time for you. Typical of the kindness and care you have always shown in this forum since I joined a short while ago. I am glad you are here and hope you are getting support and looking after yourself just now. You won't know how much comfort some of your posts have given me but thank you for being here.
love and hugs
pat xx
Hi lovely,
I'm getting the support I need and giving the support to the rest of the family that they need, we're in the process of sorting Cindy's stuff out still so we're busy but I think it'll be when we hand the keys back to the local authority it will hit properly. Xxx
Hi Carolyn--so sorry for that feeling you have and I second and third the opinions above for second opinion. I am in the States but when I knew I was relapsing, I went for a 2nd opinion and that oncologist suggested two trials they had (in the long run, I did not qualify) and her suggestion of post-treatment maintenance was different as well. This was ALL new due to reaching out. My oncologist luckily does not have an ego to grapple with and I told him I wanted to do what the 2nd opinion wanted for maintenance, which by the way, was Niraparib. I had been on Olaparib when relapsing and she very strongly believes the Niraparib should be next for me after this round of chemo. I thought in the EU they had approved Niraparib for BRCA and non-BRCA and I have read about success stories of non-BRCA being on this PARP for some time--some still going after a year or two. I would look into that and get that 2nd opinion lined up! I hope you feel better soon--I saw an oncologist once while mine was on vacation and he was a talkative fellow and told my son and me that this is a roller coaster with the ladies he treats---there will be good months and there will be bad months and I should try to remember in the "bad" months that those good ones are coming again. I don't feel it when I am on the down side but I HEAR it and try to coast till that other, better feeling returns and gets me backing to fighting mode. I wish the same for you. oxoxoxxoxo Judy
Hi Judy. Thanks for your kind message. Yes, they have approved Niraparib for non-BRCA ladies in the UK now. I was convinced he would offer it to me so when he didn’t, and said if the cancer progresses within 6 months, then I have no other options and the prognosis is poor. I have been staring into a large black hole since. But I will take your advice and try to remain calm until I feel stronger. Hoping that you are currently well. Love Carolyn x
Well--I am not just saying this--the clinical trials I was told about are all new products that have shown positive results and some of the drugs about to get approved they say will be like what PARPS were a couple of years ago so please keep the faith/chin up as much as you can. I know I will hear that at some point and I don't want to stop trying. Virtual hand holding going on here! oxoxo
A second opinion without a doubt would appear to be your best move next. Perhaps you could get to the Christie from North Yorkshire? We're here with you all the way. Please don't despair. I was next door to giving up. Been on a trial and doing much better. 💐😘
Hi LittleSan. Thanks so much for your support. Are you with the Christie? And, if so, how did you get on the trial? Were you on a maintenance drug before that? I am so pleased that you are doing much better. That is good news. I will add it to my list of questions for the palliative nurse tomorrow! Carolyn x
Yes I'm at the Christie Carolyn. I'm fortunate enough to live only 15 miles away. I became platinum resistant after I recurred soon after 3rd line carbo Taxol with Niraparib for 2 months as follow up. At the Christie, I think they almost always think of offering a trial at this stage. They also had one available that seemed to suit me well as the trial drug combo included cediranib which is an antiangiogenesis drug as is Avastin which I had had a positive and long response to a while since. Its the CEBOC Trial for those at risk of bowel perforation. I found it very tolerable at first but am whacked sideways with side effects now I'm at the end of the 18 weeks of Taxol. Never mind soon be feeling better.
Good luck and good health to you. Xx
Carolyn
I am sorry to hear what you have been going through, I would definitely get a 2nd opinion I think sometimes some of our medical team forget not only what we go through, but also screaming inside we want to survive.
I finished 2nd line treatment in December 18 I was having Cisplatin / Taxol then end of Jan started Niraparib, unfortunately for me my body couldn’t tolerate the toxicity even with 2 dose reductions, I had to be hospitalised 3 times with sepsis, but what was causing the issues was having an indwelling catheter in.
I was cc into a letter From my oncologist to my gp, updating her and it stated that I have been taken off Niraparib and will now be on surveillance for progression, I was very upset reading the letter so when I attend my onc appointment on the 4th September I will not sit back and accept what she has written to gp, I will look at changing oncologist.
Ellsey xx
Oh Ellsey I am so sorry to hear this but can really understand. It is the silent screaming inside that the medics just don’t seem to consider. I do wish you luck at your next appointment and hope you are in an area where changing oncologists is easy. Not sure, being practical, how easy that will be for me. Good luck and all best wishes. Carolyn x
Dear ellseybellsey, I am sorry to hear what happened to you. You don't deserve such inconsiderate treatment. Do what is best for yourself, I agree with you and we will support you all the way. Thank you for making me laugh with some of your comments in your posts, you really cheered me up. I hope your meeting goes well and look forward to hearing how you get on. Remember we are all here, even in the middle of the night!
Love and hugs
pat xx
Hi Carolyn. I’m sure all the ladies here have given you great advice and support. The zejula I believe can be given after 2line if you even had a partial response. The fact there ther is no progression that you responded.
There are new digs and protocols out there. Different centers come out with their own cocktail based on the most recently clinical trials. Right now all you have to do is get your body healthy. The side effects are as bad as chemo. Your body adjusts and you feel better because you know you are taking something that helps keep cells at bay or gone.
Stay strong. Be kind to yourself.
Best to you,
Xox
Marisa
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