Good news is scan is looking clear and CA125 is dropping. I didn’t ask what it was.
Bad news is that due to my anaphylactic shock with the carbo I can’t have olaparib for third line.
He won’t give me cisplatin and he can’t or won’t desensitise me although I’ve asked him to look into that. He said they’d need a crash team and I’ve a 3% chance of dying.
I could pay for olaparib myself but it’s £10,000 a month.
I feel so disappointed. What would my options be now?
I’m always very positive and upbeat but feel a bit numb. I’ve had so much bad luck lately that I’m used to everything going wrong but I’d just like something good to happen.
Sorry to moan.
Hoping all you ladies are doing well. Thinking of you all. Big warm hugs. Xxxxx
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Suzanne333
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That is good news about your CA-125 dropping and that the scan is looking clear. I wonder if should seek a second opinion as to the next steps. What exactly is your consultant proposing? It doesn't quite make sense that you cannot have olaparib because you've had an anaphalytic shock to carbo but that you could pay for it yourself.
Take care now, at least it sounds as if there's no hurry with a clear scan and you can concentrate on enjoying Christmas.
Hi and thank you for your reply. He says the protocol for olaparib is that you have to be third line and on a platinum chemo. I could get a second opinion. Xxxx
Good results!
I'd be tempted to ask for a second opinion on the platinum front. This seems to me to be the central issue.
It sounds from your results that you're platinum sensitive ( this seems to be one of the requirements for these PARP drugs).
If I've understood right, your reaction was in second line, after several cycles, not sure which one. Somewhere I read that there is a typical point (second line, cycle 3 ?) at which some of us start reacting to it, with the reaction getting worse with each cycle.That was certainly my experience. I didn't get quite to shock but was getting there in cycle 5 and cycle 6 was dropped.
If platinum works for you, it seems strange that its future use is being ruled out. I've not come across reacting to it being a reason to rule out a different drug.
I suppose chemo suites may vary but in my one they clearly have a crash team within the staff team on duty as I've seen them in action twice ( most impressive). Plus the chemo nurses will be trained for people having reactions as you did. I have since had two further lines on desensitisation. Still having an apparent impact, if less so than at the start. I think this is usual.
He's following the NICE guidance on Olaparib: you need to have had three or more platinum based lines of chemo; you need to be sensitive to platinum and you need to be BRCA+ - I'm not sure whether you are or not? Olaparib isn't given as a chemo line, is my understanding, but as a maintenance drug for those who fit the bill above in order to try to prolong the interval before they need to have treatment again.
Some of our friends on here are doing remarkably well on it. But that's not true for everyone and it certainly isn't a miracle drug with guaranteed results.
I'd try and set aside your disappointment and remember that these drugs are being refined all the time and may become options for you in the future.
Niraparib, currently being reviewed by NICE, appears to be effective, BRCA+ or not. I'm writing from the heart here. My oncologist has always felt I'd do well with a PARP inhibitor, but except in a clinical trial, I didn't qualify until the patient access scheme for it. If you look at my profile it will be clearer why (the type of breast cancer I had also does well with them).
I've gone on rather! I think the conclusion from my meandering would be to encourage patience and to chase up the platinum side of things.....
Don't let it spoil the festives. There's nothing like OC for helping us become brilliant at dealing with disappointments....xxx
Thank you for your reply. It was very informative. Yes my reaction was second line and third cycle. I was always ok with it till then. I’m BRCA2 positive.
The chemo suite phoned today and my Consultant has arranged or desensitisation next Thursday. I won’t have taxol with it as there won’t be time. I think my Consultant is just intent on seeing if I react again. I’m a bit nervous but need to know. If I react again then I can’t ever have carbo again.
I’m kind of relieved to hear that olaparib isn’t a miracle drug all the time. My consultant really rates it and says it works. He doesn’t rate avastin.
I was worried that if I couldn’t have it, I would be missing something amazing.
it's done very very slowly and you should have been stuffed full of steroids before you start.
Some places do 3 days worth beforehand which will have you hopping, but is certainly worth it if if it keeps it down. There are protocols for desensitisation available on-line, quite confusing I found as they don't all agree, but the basic principle is the same.
I think the doc probably wants to try and get as much treatment into you as poss and will be hoping this will work. Sounds as if their communication skills could do with improvement!
• in reply to
There I was lying in bed and two more thoughts popped into my head. Hope you feel honoured!
You need to have started on the extra steroids regime BEFORE going in for carbo desensitisation. I had a delay right at the start because no-one had thought to give me the prescription. These two extracts are pretty typical of the advice in different heath trusts. (There is variation: I had more dexamethasone and didn't take the other two - I don't know why. But what they all have in common is starting at least a day before the chemo)
1)PRIOR TO EACH CYCLE of Carboplatin
DEXAMETHASONE 8MG
BD
–to be taken the night before and the morning of chemotherapy
RANITIDINE 150MG OD-
to be taken the night before chemotherapy
CETIRIZINE 10MG OD-
to be taken the night before chemotherapy
2) Ensure patient understands that pre-medications must start the morning of the day before treatment, so that they get 2 oral doses of cetirizine and 3 oral doses of dexamethasone & 3 oral doses of ranitidine prior to carboplatin.
Second thought: why can't you have the taxol separately on a different day? I've had at least one occasion when I had to come back as we'd run out of time for something....
And finally, there are people on here who have managed to revisit platinum at a later date.
The staff will be watching you like a hawk, My cycle 4 had been so unpleasant, I mentioned it to the nurse for cycle 5. She kept a very close eye and realised I was reacting before I did. So try not to worry too much.
The chemo suite nurse did say on the phone that she will phone on Monday as I’ll gave to have some steroids etc the day before. I asked about when I’d have taxol and she said my consultant will sort that out. He did mention when I saw him that I’d have carbo one day and taxol the next.
I did wonder why she said if I reacted I could never have carbo again. I asked if I could have it in a couple of years but she said that if I reacted this time then that’s it. Maybe because it was anaphylaxis?
I’ll see what happens Thursday. Hopefully nothing. Lol.
Hi Suzanne. This is the best and safest place for a ‘moan’ ! I just wanted to endorse the helpful advice from the others. You may find a second opinion really useful, may be from the Christie or the Royal Marsden? I had to change from carbo to cisplatin half way through second line but it has given me almost 12 months of stability so far. In the meantime, good news about your CA125 so I hope concentrating on Christmas celebrations will help the old anxiety levels to drop. Love Jo 🌻🌺🌸🌼🌹🎄🎄🎄
I asked if I could have cisplatin but he said I couldn’t. He’s decided to desensitise me next Thursday. Try to anyway. I feel a bit nervous about it as that reaction was awful.
I can’t begin to claim any real knowledge but from what I’ve picked up from others on here, it’s unusual to be denied cisplatin which is why I wondered if another opinion might help. All the very best for Thursday. Do keep us posted if you feel up to it. Love Jo x
Yes, I was told that too and the side effects seemed harder but hard to know if this was just the cisplatin or the cumulative effects of the whole second line (8 years after the first line). It could be that my reaction to carbo wasn’t as severe as you experienced and that is why cisplatin has been discounted for you May be the Marsden could advise? Xxx
It’s a while ago, but I think it was 1c and had total hysterectomy followed by six doses of carbo/taxol just be sure, by all accounts I was as close to being cured as they dare to say. I was very lucky to be diagnosed early. Then, out of the blue, 8 years later, it’s back with some discussion as to whether it’s the same type of OC or a variant (so much more learnt in the intervening years). Stage 4 was mentioned on rediagnosis because it had spread. I guess all,our journeys are slightly different. xxx
Hi Hun this happened to me with taxol and caelyx. They desensitisation they tried with me they gave me two days of steroids to take prior to chemo and I still reacted ...?
Then my diagnosis changed. I’m now on hormones and he wants to use chemo in the future ...??? How I don’t know I’m petrified.
Can understand your disappointment and concern but hang on in there , you have had some great news to celebrate with CA125 coming down and a clear scan .
Some great advice from Mac 27 , I would definitely get a second opinion as to next steps and olaparib as it seems to depend on how they interpret the guidelines . Surely if your scan is clear and CA125 is coming down you are platinum sensitive so it’s more to do with how they are equipped to deal with your possible reactions .
Focus on the positive , I know not easy and enjoy Christmas knowing your scan is clear and the New Year will bring new options for future treatment when you need it .
Was this your mid-way scan? That’s great news that it was clear! I understand your disappointment though. Don’t let it put a dampener on the fact that things are going well now. Hopefully you’ll get a good long break after this round of chemo anyway 🤞
Suzanne, It is not great when you get good news and bad news because unfortunately we tend to concentrate on the latter. It really is such GOOD NEWS that the scan is clear and your .ca125 is down.long may it last. I WITH some of the others who have suggested a second opinion. Have the best Christmas you can. Love Chris
Hi Suzanne fantastic news about the scan and ca125.
Can't help with the olaparib as I have never had it, but wanted to send nice calm vibes to you, this really is a sh....y thing we have to deal with and it doesn't take much to nock us off our perches does it.
Enjoy Christmas,gather your strength and go get a second opinion.
Hi Suzanne, what a dilemma. Have you had the BRCA test. I had mine yesterday and was told if it turns out to be positive, if my cancer comes back, I will be entitled to a drug that people with a negative result can't have. It's because it is more effective for women with BRCA1 or BRCA2. I can't remember what the drug is but thought I'd mention it in case you didn't know.
I wish you all the best and thinking of you.
Hugs and kisses (not the kisses as I've got a throat and cold). Zena xxx
First of all I’d like to give high fives for the bloods/scan result. And now to move straight into ?practical advice. Your consultant says “they’d need a crash team”. Where are you being treated? I would wager that any hospital/medical centre administering chemo would have to provide a crash team response as a matter of course. I am an emergency nurse and part of my role is to respond to medical emergencies within my hospital but i may be misinterpreting your situation. I suppose what i want to say is that every medical procedure carries its own risk but that also means a risk vs benefit analysis should be carried out. I so hope you find some peace of mind 💜
The chemo suite phoned today and I’m going in next Thursday for desensitisation. Hopefully I’ll be ok. If I react again I can’t ever have carbo again. I’m a bit nervous as my reaction was severe but it’s got to be done.
All the best, Suzanne, and hope the desensitisation works and isn't too scary. Breathe out and think of lovely places...! We are always between a rock and a hard place with OC, but on we go. I always feel I'm on thin ice, just try to distract myself with nice things.
Thanks! Have had 3 lots of weekly taxol. Feel ok on it except there's a whole range of bowel experience during the week from constipation to the opposite....!
Well, I'm ok otherwise so I just get on with it. Usually there's just one bowel crampy day. I think when it's a weekly chemo your gut has just recovered and off you go on the circus again. Joy...
So far I've not used Movicol which is a good thing since I don't like the taste. I have an unopened bottle which the hospital gave me after my op so I'm ready just in case!
Hope you're finding the weekly taxol doable, I'm doing fine although numb feet are getting more numb. Numbness past ankles yesterday but fortunately not today.
Definitely doable. I don't have to rest after going upstairs or uphill as on other chemos, and I've managed to sing in a couple of concerts. Operating fairly normally, really. I'll be happier once I know whether it is working - scan in early January after 6 doses. Unfortunately I've picked up a sore throat and cough now but I reckon that's par for the course at this time of year.
Focus on the fact your marker is dropping and treatment is working. So when this treatment is done seek a second opinion. No harm at all in doing this. So your scan is clear and hopefully you won't need treatment for quite some time
My experience is opposite, presently after a total hysterectomy and debunking, 8 cycles of cargo/play ending in June 2017,my last scan was clear, but CA125 inching up from 45,44 to 82; so back on chemo this time cargo/gendarme, anyone have this drug cocktail?
Hope you do well on the chemos. My scans have always looked clear. The only scan which showed something was a PET scan. Even on diagnosis and a CA125 of 5,000 the CT scan showed no mass. Only a. Thickening which was my one run which had folded over.
Thinking of you. Keep positive. Xxxx
Yes it is. I had Avastin and Gemzar last time and for some reason I remain stable. Not complaining at all but you do wonder when does the bubble burst? I hope it wont
Hi Suzanne As usual the ladies have give you some good advice I just would like to send my best wishes for you on Thursday hope all goes well...take care Lorraine xx💙💙
Suzanne, I am so sorry, have you already asked for a second opinion?
I remember asking my GP about the position about who made decisions some years ago (this was in relation to a totally different issue) and he was very clear that you, the patient, made the decision if the risk was clearly explained to you. Having said this I think it might be very difficult for oncologists who really think they are going to put you at greater risk, when they have vowed to do no harm.
I must admit, my oncologist at the Marsden actually looked quite distressed when she saw how I reacted to Niraparib when she had tried to control the side effects as well as she could. Having worked in ma hospital myself I tend to be maybe oversympathetic to all medics but I do also tend to stand my ground and am presently in the middle of a PALS complaint. Could you ask for just one treatment and offer to pay for the crash team presence....would that be cheaper or more expensive?
It is difficult in relation to olaparib as so many on this site have done very well yet lots of others have had to come off it. Is he offering anything else? Would he consider a break period over Christmas and then trying again?
I really believe you should not rush your decision making....talk to us and to others and in the end follow your gut instinct. You can have as many private opinions as you like I believe....although don't expect them all to agree....regrettably. The opinions are obviously cheaper than the drugs and you don't have to carry on with them.
Am thinking and praying for you lots, think it just always feels insufficient... love and hugs do try to relax over the season but also enjoy it(!) love once more, Chris xxx
I’m going in next Thursday now for desensitisation . A crash team will be there. I think my Consultant is very keen for me to have olaparib. He says it works. I’ll see what happens on Thursday. I’m a bit nervous of reacting again. I’ll have to see what happens.
Good luck for Thursday, will be thinking of you. But couldn't your consultant have indicated he was thinking of a desensitisation programme at the time, rather than give you days of worrying what next to do.
I hope it works and you can continue with carbo. It's worked for many.
He didn’t mention desensitisation. I mentioned it and he looked surprised that I knew about it. At the time he said it wasn’t really possible. The meeting was Thursday and the call from chemo suite came yesterday (the day after) so he obviously decided he could go ahead and do it.
I also don’t understand why I couldn’t be changed to cisplatin.
Write to the company that makes it. Some women are getting it free. It's call compasionate care or something like that. Have you tried to get in a trial. It would be free then also.
Olaparib has now been o.k's for everyone Braca positve or negative. I am taking it and I have only had one chemo prior to starting Olaparib. Hope you find what's best for you. Prayers for healing, new drugs and a cure.
Hi Suzanne, now im totally confused..... I had a grade three anaphalactic shock, seriously bad sock. Had fourteen shots of adrenaline and was then put onto cisplatin. As you know im on a trial for Olaparib. Id definitely seek a second opinion. xx Kathy xx
I don’t know why my Consultant was reluctant to give me cisplatin. Perhaps he wants to see if I can be successfully desensitised first. They’re doing it this Thursday. Xxx
Thanks Suzanne, I'll bounce back, just stress at work, the time of year when memories of loved ones surface. You are right to look forward. Big hug back at you xx
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