Hello all. My mom just finished her 3rd session of caelyx, had a CT scan, went to oncologist who told her treatment is not working, CA125 is up to 700 ftom 340 and now there is cancer in liver. She was shocked as she had been feeling okay with energy the past two months, with hair growing in nicely, headaches gone and ascites gone.
Now doc says he wants her to do a clinical trial. She is pretty disheartened and not sure if she wants to go that route as he said it could be 10-20% effective and not sure of side effects and with first two lines of chemo had a really hard time. Also it is a good hour drive to cancer centre where she would have to do clinical trial. Her local cancer unit for regular chemo.is just around the corner.
Also asked abour niraparib, but doc said health insurance in Canada does not cover it and is 9000 a month.
Hi, Sorry the Caelyx has not help we are so different in our response to chemo, Caelyx has been the most efferent for me . I had it at 3rd line and now again with carbo/caelyx this combo is working well.
When I had it as a single chemo it did not work for the first couple of treatment then it went down and then up, by the time I had 6 treatments it had gone down and even when I finished treatment it went down 10 pt more.
Would your mum consider a second opinion it could put her mind and yours at rest, that you are on the right path. ...hope it all works out well take care ..Lorraine xx
Thank you, Lorraine. I think we should get a second opinion. To me that her hair is back, no ascites or headaches and her quality of life is there means a lot. I think she wants to continue caelyx because of that. Will keep you posted.
Hi. I'm in the UK and I was told that Niraparib was only effective if a platinum based chemo was shown to have had some effect. I've recently completed chemo - carbo/caelyx for recurrence, which got my CA125 down to 61 and have been recommended for Niraparib, which has only just been licenced here. Hope your mum does find a suitable treatment.
Hi there, I am so sorry to hear Caelyx hasn't worked for your mum. Like Numi has said Niraparib is for platinum sensitive patients. The fact this treatment hasn't worked most likely means your mum isn't likely to be offered this drug. I would look into the trial but also see if there is anything else she could try. Take care Cindyxx
I think mom's concern is the unknown side effects of the trial, and will it even help. She is discouraged from not having much relief in 2 1/2 years of having ovarian cancer. A roller coaster ride.
Hi there, that is sad not getting a break. Do you know if your mum has had a BRAC test yet? If so is she positive for this? If not have you asked if your mum's tumour has been gene tested. I know it's not offered in the UK on the NHS but seeing you live out side of the UK maybe it's on offer where you are. If so they then could find out which treatment woukd be best suited for your mum's cancer. What ever you decide on please keep us up dated & hopefully someone on here will have a better answer than me. Take care Cindyxx
Hi there, ok so they won't be looking at PARP inhibitors right a way. I am BRAC negative too if she was positive there is more treatments on offer.
Do you know if testing her tumour has been mentioned?
Also have they gone into any details what trial name this is? Because you could look it up on line & see what it is all about. Sometimes doctors go on the side of caution & can give a more negative view of trails as well as treatments.
By the way I have been fighting this the same time as your mum. 2 & a half years. I know it's bloody hard going. Take care Cindyxx
Hi Cindy, thanks for the quick reply. Yes, they are going to test her tumour. Trial drug he is thinking about is called Mirvetuximab. We have booked an appointment with her family doc to discuss everything before going to speak to specialist about the clinical trial. Mom's family doc speaks clearer and not in a rush. Always find cancer doc talks to fast in terms that are hard to understand. Feel rushed, even though he is a nice guy and feel that he does care. A crazy time fir my parents too as Dad has knee surgery on Monday. Mom is also dealing with her brothers estate.
I agree with Lorraine....Caelyx worked for me but I think got better as time went on. I then went on to Niraparib but my blood apparently could not cope with it ...I felt pretty ill and had to have several blood transfusions.
If she feels well can she ask to keep going with the Caelyx for a while?....I guess a second opinion may help. Chris xxx
I agree with the ladies who have suggested a second opinion especially if your Mum is feeling well, Do you think that this would be easy to organise. There are other parps that are effective and taken at home orally so perhaps the long trip to the other Cancer would certainly be worth the effort to find out more and to get a second opinion
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Thank you it would be wonderful if all cancer drugs could be taken orally. The IV is never pleasant.
Caelyx is notorious as an often slow working chemo, many find it takes 4 or so infusions before a benefit is seen....not that I am suggesting that one more would then show a positive result, but perhaps food for thought if your mum could have another one....good luck
Hello, my tumour was tested for this trial, Mirvetuximab Soravtansine, but my tumour didn't have the alpha folate receptor. I think these are the details for the trial, clinicaltrials.gov/ct2/show... which you could look at and so have any questions ready for your next meeting. There are advantages to being on a trial, even if you are randomly allocated to one of the standard treatment drugs because of the additional monitoring and tests. However, you need to weigh this up against the additional travel time plus there may be additional visits.
You mentioned below that your mother was only have Caelyx and not Carbo / Caelyx like some other ladies. If your mother recurred within six months of Carbo, Carbo isn't usually offered again.
All the best and it would never hurt to seek a second opinion if you are doubtful about the advice you've been given.
Thank you for your reply. Yes, mom did recur within 6 months. I will read your clinical trial info. Much appreciated.
Hello all. Just wanted to give you a followup from Mom's appointment this week.
We followed advice from this site and went for a second opinion. Both family doc and homecare nurse are not for clinical trial. They told mom she should definitely ask to finish caelyx treatment as she had limited side effects and was feeling good after chemo was reduced to 80%.
Went to oncology/clinical trial visit today. Had a 3 hour wait after registration before signing in. Crazy!! The trial that would be offered has wicked side effects, such as blurred vision with possible cornea damage! Also she would have to drive the 2 hour round trip and waiting time of 2-3 hours before trial therapy every week. Also would have to see an opthamologist out of town too to assess eye damage. So she said no to trial. Doc does not want to continue with caelyx as it has not shrunk her tumour. I explained how her headaches are gone and ascites is too. Also that she feels terrific. That mom would like to finish up other three caelyx treatments and see how it goes. He said he would talk to another oncologist and see what he says before saying yes or no. Will keep you posted. On a side note, my dad had his knee replacement Monday, is now home and doing well. Have had a very hectic week here with my parents, but glad I can be with them to help.
HI ,Glad your mum had the second opinion , I hope she can finish Caelyx if that is what she wont's, and as you said she was feeling ok on it. Caelyx will not cure cancer but if it can stabilize it for a while it's worth the try.
Give my best wishes to your Mum and keep your chine up.
As for your dad, I took a brake from chemo last year to have a knee replacement, so glad I did I need the other one done but while I'm on chemo he will not do it so one good knee is better then none.
I read your comment to my parents. You have done amazing going through both cancer and knee surgery. Wow! Dad is sleeping a lot this week but been doing his walking and exercises. Mom heard back from oncologist and they both said no to continuing caelyx. Both mom and I are disappointed with that. He said he will see her in December. We just pray that she can have good quality of life for as long as possible and that dreaded ascites gives her a break. She was out in the garden the past few days trimming everything for winter. She loves her gardens.
Hi , Was that the opinion from the second oncologist that said no, if not then maybe the second oncologist might have a different opinion of caelyx I'm glad she is feeling ok at the moment hope they have a positive treatment soon for her.
When I had my knee done I took 9 week break and then went back on chemo. as I said one good knee is better then two bad one's.
Tell your Dad to keep up with the rehab this is very important to recovery.
Both oncologists say no to continuing caelyx. They said they can't give it to her for symptom management only, tumour had to show improvement on CT scan
Just checking in. Mom has had a fantastic month except for bowel issues. Nice to have a break from chemo and blood tests. She is not sure what the cancer is doing in her body, just knows it is there. Has had energy to do all normal things around the house, shopping etc. Her concern is her bowels. Takes 3 tsp of lactulose, 2 senekot and 2 colace morning and night, and bowels are either sluggish or loose. Any suggestions?
HI. Glad to hear your mum is feeling good and yes it's good to have a break from chemo. Next week will be my 8th carbo/ caelyx treatment and so far so good. my oncologist will give me a break over Christmas and we will startup in the new year, maybe with a bit of luck I might get a longer break.
I know your mum has been on Caelyx as a single treatment , have you ask about Carbo/Caelyx as a treatment?
I've noticed on this site more ladies are having this as a treatment, the two together seems to work.
As for the bowels I have trouble all the time I try to keep on top of it by taking 2 Coloxyl (softener and laxative) at night, then1 sachet a day, 2 if needed of Molaxole plus drink as much water as you can.
I'm sure the ladies will also have some good advice.
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