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Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: Abraxane -our experiences so far

Postby Bowie » Tue Aug 05, 2014 8:34 am

Nikki, thank you that's really helpful. I'm contacting our local council today re Blue badge, at least if he could get outside himself a bit more without worrying about parking and walking, I think that would help his morale.

I hope you gave a good day too.

Fiona X

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: Abraxane -our experiences so far

Postby Birchen » Tue Aug 05, 2014 12:10 pm

Hello Fiona
We thought the same to about the blue badge but our local council were brilliant and as it is a terminal illness we had no problems at all in getting the badge and it came within seven days. Really hope you get all the help you need and we found everyone's support such a weight off our minds with the day to day things that we had to go through. Take care Lyn

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Abraxane -our experiences so far

Postby sandraW » Fri Aug 08, 2014 10:57 pm

Hi been away so only just seen your post, I hope James is feeling a little better now. We have not needed the hospice ourselves yet, but we did go to visit a young girl we had met while Trevor was having treatment, when she was admitted for 2 weeks to get her pain relief sorted out. They were all so lovely and Trevor said when we were leaving, what a nice place it seemed to be and not at all what he expected.
As for the blue badge we were told that as the life expectancy for PC is so bad!! that when you are diagnosed you are automatically entitled to one, a Macmillan nurse at our local oncology centre filled in the form for that and the Attendance Allowance and we were awarded it immediately, in November. The badge does make things so much easier especially when debilitated with treatment. take care sandrax

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Abraxane -our experiences so far

Postby InfoForMum » Sun Aug 24, 2014 1:54 am

Nikki hon, what fab news to pop in and hear. Tumbling CA19-9, a holiday and your usual tenacity getting to the bottom of that clot - warrior women ride on! :-)

So, so, so glad to hear he's mostly coping fine with the chemo.

Lots of love

Sarah

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Abraxane -our experiences so far

Postby nikkis » Sun Aug 24, 2014 10:02 am

Lovely to hear from you Sarah. Yep, we fight on, still with the Wunderkind, although even he is amazed at how well Paul has done.
Think of you often,
Nikki

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Abraxane -our experiences so far

Postby Cathy » Mon Aug 25, 2014 6:31 pm

Hi all

Just catching up a little.

Nikki, I hadn't even realised you'd managed a holiday! Well done you :). I am so glad Paul continues onwards and upwards.

Lyn, how absolutely lovely to hear from you. How are you doing??

Re the blue badge query.. A belated reply.. you are automatically entitled to one if you get the highest mobility "rating" for PIP (formerly DLA) and most PC patients (inoperable anyway) would be entitled to this. My own fella, Jonathan, got full DLA and a blue badge despite walking to the pub, or wherever, quite happily.

Lots of love all

Cathy xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Abraxane -our experiences so far

Postby nikkis » Wed Sep 03, 2014 4:13 pm

Hi All,
We have been having a more challenging time the last few weeks. Paul has found the last 3 chemo sessions really hard, with more pain and sickness afterwards. He has now been on chemo every fortnight for a year, so perhaps not surprising. He has also had 2 lumps on his legs, which are painful to touch. We saw our GP today, who said they are superficial clots. These are probably as a result of Paul's platelets being very high, something that gemcitabine can do (have been told it can make platelets low or high). Tomorrow we have an appointment with a haematologist that was arranged after Paul had his recent clot on his line, so we will see what he thinks.
My thinking is that he needs a break from the chemo now, but Paul is terrified of this prospect. He says he just wants to be alive even if he is feeling rubbish all the time, and he is convinced the cancer will start growing if he stops chemo, but I guess we will just wait and see what his consultant thinks.
We did manage to review our wedding vows yesterday, which was lovely. It was our 19th wedding anniversary, and it was just us and our 2 girls, a very special occasion.
Nikki

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: Abraxane -our experiences so far

Postby Birchen » Wed Sep 03, 2014 5:01 pm

Hello Nikki
How absolutely wonderful that you were able to renew your wedding vows especially with your children in attendance. Hope you had a magic day and although it must have been sad in parts. I totally understand where your husband is coming from, my husband was also scared that if he stopped chemo the cancer would grow. I expect the oncologist will be able to put his mind at rest and good luck for the future. take care Lyn xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Abraxane -our experiences so far

Postby sandraW » Wed Sep 03, 2014 5:27 pm

Sorry to hear that Paul isn't feeling too well at the moment, lets hope the haematologist can sort something out for you.
Congratulations on the renewal of your vows, and so glad you had a lovely day.
We have an appointment with the consultant on Monday and I am sure Trevor will be going back on chemotherapy very soon, even though he is not looking forward to it. take care sandrax

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: Abraxane -our experiences so far

Postby Bowie » Wed Sep 03, 2014 8:04 pm

Nikki, congratulations on renewing your wedding vows. Sorry to hear Paul isn't feeling good. James is having the same treatment and for him the tiredness and diarrhoea is the worst. The diarrhoea mostly, but not always controlled by taking codeine, but that makes him feel dopey. Although James is a lot older than Paul, he's 70, he was extremely fit prior to all this and I know that depending on results he is planning a longer break from chemo, if he can. James' oncologist has says there are two schools of thought, one continuous chemo, which can be at a lower level or if all stable stop and scan 8-12 weeks and then restart if needed. I guess the second option is a bit scary in case it takes hold. Hope things start to get better for you all really soon. Fiona X

Johanna
Posts: 5
Joined: Fri Mar 21, 2014 7:20 am

Re: Abraxane -our experiences so far

Postby Johanna » Thu Sep 04, 2014 7:41 am

Having chemo non-stop really is quite rough, no wonder that James and Paul are not feeling so good. My mom is currently having a six to eight week break from treatment and feeling okay. Things still seemed stable on the last scan (no new growth) and since mom had to skip one infusion in each of her last three cycles because of platelets being too low, this is what the doctor suggested. Of course it is scary but not altogether a bad thing, now that she is feeling quite good and is able to focus on other things as well. She is very much into healthy eating etc. And the bone marrow will also have some time to recover, so hopefully treatment can continue without too many missed sessions after the break. I really do hope that this is the right thing to do. On the other hand, she wouldn't probably have been able to tolerate the treatment very much longer without the break anyway.

Nikki, congratulations on renewing your wedding vows - sounds wonderful!

Johanna

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Abraxane -our experiences so far

Postby nikkis » Thu Sep 04, 2014 6:22 pm

Thank-you all,
It is so good to know you are not alone. Specialist today did not seem overly concerned by the superficial clots on his legs. He is now taking clopidogril, which helps stop the platelets sticking together. He has also been on clexane twice a day for the last month which he hates, but the specialist said he would review again in a month and he might be able to go back on it daily.
So will have a chat with the oncologist next week about the on going plan for chemo.
Nikki

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Abraxane -our experiences so far

Postby nikkis » Fri Sep 12, 2014 4:28 pm

The consultant reduced both the abraxane and gemcitabine by 12%, he said that the type of drugs they are works rather like alcohol, you are ok and then you have a bit more and it pushes you over(hope that makes sense). Seems to be doing the trick, paul has had less pain, more energy and has only been sick once since chemo on Tuesday.

We have had a stressful week, Paul's Hb dropped for the first time since January and he needed a blood transfusion after his chemo. His tumour markers have also been rising. They were 19 in July, they had risen to 58 last month, but this week they were 118. Obviously I was very concerned being as he has also had more pain recently. He had a scan yesterday and have had a phone call today to say it was another boring one with no changes. We are very lucky that our health insurance means we do not have to wait, but it has been a worrying few days. Actually every week is stressful, there is always something to worry about isn't there lovely people?!
Nikki

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Abraxane -our experiences so far

Postby sandraW » Fri Sep 12, 2014 9:08 pm

Nicky, you are so right, there is ALWAYS something new to worry about, Trevor got his results and is back on Folfirinox on Monday, I will update his thread when I feel up to it.
These tumour markers are so strange Trevor's have gone from 220 in June to 7500 beginning of September, yet Paul's were 19 up to 118, as Didge says they are certainly individual and not comparable. Just glad Paul's scan looks good and hopefully the reduction on his chemo drugs will continue to give Paul a boost, take care sandrax

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Abraxane -our experiences so far

Postby nikkis » Fri Sep 12, 2014 9:49 pm

Hope all goes well Monday Sandra and you are ok. I had prepared Paul for going back on the fox if there were changes on the scan, not a prospect he relished, but it's good stuff. A stress free evening is probably about as good as it gets!x