Abraxane -our experiences so far

[nikkis]

Thank you Emma,

I can't believe it's been 8 months since you lost your wonderful Jon, I remember your story so well.

Hope you are ok, and your grandchildren are keeping you busy,

Love,

Nikki

Ps probably a bit guilty of only posting when having a positive moment!

[PCUK Nurse Jeni]

Hi Nikki,

That's good news about Paul and the stable disease.

Not the best that he has to stay on chemo, but as you say, this seems to be a "here to stay" thing.

Hope he continues to do well for a long time!

Kind regards,

Jeni.

[nikkis]

Thought I would post an update on our week, in case our experience are relevant to others.

Paul had a clot on his PICC back in February. He started on clexane, but his arm has never fully gone back to normal size. This has always worried me, but Paul has played it down and we were told as long as he was on clexane it would be fine.When we were on holiday his arm became very large, and we put this down to the heat. Last week when he was seen for his chemo, they weren't too worried, and were more concerned by his possible shingles. Then when we went for chemo this week I pointed out the arm again, and they were more interested! Paul has a scan which showed the remains of the previously seen clot, but when Paul's consultant came he was not happy. His feeling was that he didn't want Paul doing so well with the PC only to succumb to something else. So he had to stay in and have a more detailed scan. This showed another clot at the end on the PICC that had caused narrowing of the vein. As a result he had to have angioplasty - where they insert a balloon through a tube to expand the vein and remove the clot.

Having a general the day after chemo was pretty tough, although I still took him home that day, on the train! He is doing fine now. I was in a bit of a state waiting for him to come back from theatre as I had been told it would take an hour, when in fact his was gone for 3. But then what 3 hours when he has previously had 8 hour and 10 hour ops!

Lesson learned - if you are not happy about something, keep telling people until they listen,

Nikki

[Bowie]

Nikki, so sorry to hear about shingles and the clot, you must have been frantic. Hopefully things start to improve again now.

James, as well as getting diarrhoea, second cycle of abraxane and gemcitabine just started last week, a bit reduced and losing his hair; is feeling really tired and lethargic. No sooner than he gets up, he wants to go back to bed. This is all really hard as only a few months ago he was working, sorting out an extension, looking after our grandchildren and generally carrying on as usual. At least he still doesn't have any pain. However, no one at the hospital seems very concerned and our liaison nurse, the Macmillan nurse is no help, apparently she doesn't know much about PC! Where should I go for help, we just want someone to sit down with us and talk it all through.

Hope you have a good week

Fiona X

[nikkis]

Thanks Fiona, as we all know this thing rarely gives us a chance to relax!

I am sorry to hear James feels so rough. It interesting how the chemo affects everyone differently. Paul lost all his hair on folfirinox, but it grew back as soon as he started gem/ abraxane, and the diarrhoea has been much better. He did feel worse for the first month though, and our local hospice doctors felt it was making his quality of life so poor that he should consider stopping at the time, but he is now so much better, so hopefully James will feel better soon.

It's worth ringing the nurses here for advice. They have lots of knowledge, and you will find that once you start to sound like you know what you are talking about the professionals you deal with will start to listen to you more. If you are feeling brave you could ask about changing your macmilian nurse perhaps on the basis that she doesn't have any knowledge of PC? We asked to change our hospice nurse (we don't have Macmillan here), as Paul really didn't get on with her, and it was one of the best things we did. Our new nurse isn't a PC expert but has lots of experience in symptom control. Is there anyone you can talk these things over with, perhaps a good GP or practice nurse?

Take care,

Nikki

[Bowie]

Nikki

Thank you. I'm going to take your advice and go for a new Macmillan Nurse, I think if James had a medical practitioner he had confidence in, that would help. Also you mention the hospice doctors, how do I go about making contact? I know there is a hospice in our area, but I'm afraid James won't want to go there, although I think from reading your posts they can help without him actually staying?

I'm really grateful for your advice

Fiona X

[nikkis]

Hi Fiona,

Our hospice certainly offers lots more than just inpatient care, but they are all independently run so will vary as to what they offer. Have you had a look at their website? That will give you an idea of what they do. Paul has reflexology at ours, which he really likes and I had counselling sessions for a while, and the counsellor was great at helping me sort practical things out too. Ours have doctors that come out to see you at home, but not sure how common this is. I rung up and referred ourselves but I know most like a referral from your GP. They have also sorted out practical things like a parking permit and personal independent payments. Paul wasn't that keen on having them involved initially, but with PC you never know what is round the corner, so it is reassuring to know they are there, and know of us, in case we need them.

Take care,

Nikki

[Birchen]

Hello. My husband Terry also had shingles which came up overnight on the side of his nose and this in turn caused his eye to droop as it affected the eye muscle. He did find this very distressing but it did get better after about a week. I did not think that things could get any worse but he put on a brave face and wore sun glasses to his gents crhistmas lunch. Our oncologist referred Terry to our local hospice and also the palliative care team at the hospital also liased with them during the final stages of his illness. As a family we thought the hospice were fantastic and made a dreadful time so much easier. I don't think that people realise the hospice is not just for end of life care. They can give so much more with home visits and help with getting the pain meds right. Hope that they will be a great support for you. take care Lyn

[Bowie]

Nikki and Lyn, thank you. I've looked up our local hospice and it looks good, but like Paul initially, James isn't keen and says he is determined to get better so doesn't want it mentioned again. Does a parking permit mean a blue badge? having one of these would really help James as he is now getting really tired and it would help him have a bit more independence in being able to drive to chemo occasionally. I've just looked on line, but don't think being too tired to walk far meets the criteria. Parking is really bad at the hospital and usually the nearest car park with spaces is at least 10 minutes walk.

No a good day today, but hopefully tomorrow will be better.

Best wishes

Fiona X

[nikkis]

Hi Fiona,

Sorry to hear you haven't had a good day. Yes I did mean blue badge. Paul doesn't really meet the criteria, but the hospice nurse didn't think that was an issue and just sent off the form, I don't think anyone questions these things when you have a diagnosis of PC!

It's a shame James feels so strongly about the hospice, they really are great places, at least you know there is one nearby should he change his mind.

Hope you have a better day tomorrow,

Take care,

Nikki

[Bowie]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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