Abraxane -our experiences so far

[J_T]

hi Nikki, so pleased to hear that everything is stable and Paul continues to be well. Nice too that you managed to get away

Take good care of yourself.

Julia x

[sandraW]

Hi Nikki, that's really great news,and so glad to hear Paul is feeling much better, good for him "volunteering" like that! will look forward to hearing about his experiences when he goes to NICE. Glad you managed to get away and recharge your batteries. take care sandrax

[Slewis7313]

Hi Nikki, good to see that Paul may be going to the NICE workshop as a patient representative. He (and you of course) with your experience are perfectly placed to contribute to the review. For information, I went to such a workshop last year to do with the drug Mastinib (which has currently been suspended pending the provision of more information from the manufacturer). I did not contribute anything of real real value, but found it very interesting. There were (amongst others) representatives from the manufacturer, a senior Oncologist and A senior NHS representative. The Oncologist was refreshing in her loose interpretation of the rules regarding who could have what treatments which really put a smile on my face. More importantly, the NHS guy did not say much and when he did was very careful in his choice of words. His only real contribution was along the lines of "at the NHS we need to be consistent" (or words to that affect). What I took from his comment was that as the CDF had already rejected Mastinib, he would expect the NHS to similarly expect NICE to reject it. On that premise, I would hope that if the the CDF has already approved Abraxane, then the NHS would be consistent and support NICE in approving it for general use?!

A bit naive perhaps, but finger crossed.

Steve

X

[nikkis]

Thank-you for your kind words Sandra and Julia.

Really glad to hear your news Steve, I sometimes wonder if it is the on-going chemo that keeps Paul's tumour in check, or it would be stable without it. However he was very rough at the beginning of the year before changing regimes, but then that could have been as a result of the folfirinox on top of surgery. Who knows? Will stop writing the rambles in my head as they probably only make sense to me! Nothing is clear with this disease, and everyone has a different experience.

Hopefully the more people that are given Abraxane, while the CDF has approved its use as a stop gap, and have positive results, the better chance there is of it being approved by NICE. However the restrictions seem so limiting it seems that not many will be eligible. Paul would definitely not meet the criteria. Whatever happens the more PC is discussed can only be positive.

Nikki

[Johanna]

Thank you for your warm welcome, I really appreciate it – and I am sorry I haven’t responded earlier. I have had my hands full looking after the kids, work, dealing with mom’s disease and so forth (feeling a bit depressed, I must admit). However, I am glad to be able to report that overall mom has been feeling quite well despite the chemo symptoms. Taste disorder is one of the most annoying symptoms to her because it makes everything taste really weird and affects appetite. Despite this, mom has put on much of the weight she lost earlier – and I take it as a good sign. She has been focusing on eating well (organic, anti-cancer food, green smoothies etc. - yummy!). She will have a CT scan next Tuesday and I am feeling very nervous about it. I hope there the results will be good. Mom is hoping she could take a short break from the treatment (if the results are good) to be able to enjoy summer – but I am not sure if that will be possible. We’ll see.

[Janiebobs]

Welcome Johanna,

I hope your Mom's scan goes well on Tuesday. Fingers crossed my Dad gets his results on Tuesday from his first scan since December.

I am very interested to hear everything about Abraxane. Oconologist said to Dad to keep it in reserve for when Dad's gemcitabine stopped working but posts would indicate that as it isn't first chemo drug he wouldn't be eligible to receive it from NHS and would need to pay ( have I understood this correctly?)

Jane

[Didge]

Jane, I am also confused. My bf had his gemcitabine stopped (adjuvant chemo) because his kidneys were too weak. Now they are saying if it comes back they will use Abraxane (but alone?) I suppose they might get round the rules as it could be considered first line treatment for advanced PC. But like you I am concerned that it would not be the first chemo drug he's had. Not that I'm going to alert them to that of course. If they want to prescribe it, all well and good!

[Slewis7313]

Thie following extract is the criteria from the Cancer Drugs Fund regarding Abraxane:

The first line treatment of advanced adenocarcinoma of the pancreas in combination with gemcitabine where all the following criteria are met:

1. Application made by and first cycle of systemic anti-cancer therapy to be prescribed by a consultant specialist specifically trained and accredited in the use of systemic anti-cancer therapy

2. Histologically or cytologically confirmed adenocarcinoma of the pancreas

3. Stage IV disease (patients with locally advanced disease are ineligible)

4. PS 0 or 1

5. No previous chemotherapy for advanced disease

6. No previous chemotherapy for early disease unless given as a radiation sensitiser at least 6 months previously

Hope this helps!

Steve

[Bowie]

James has finally had his PC confirmed, through biopsy of lung and offered Gemcitabine and Abraxane, however, after reading all these posts should we be going for folfironox or something else first? He is a very young and fit 70 year old and apart from weight loss and intermittent diarrhoea- much better mostly now that he uses Steve's tip of bananas, before every meal- still feeling really well and no pain. We don't have insurance, but would consider self-funding to get him well. We see the oncologist early June, until now apart from seeing a consultant after his CT scan, which he paid for and then the consultant didn't have the scan or his notes; we've not sat down and talked with anyone. Results have always been via phone as was the final diagnosis. Feeling really distraught, angry and still unable to take it all in.

Fiona X

[Didge]

I feel for you, Fiona, I imagine Gem and Abraxane have overtaken folfirinox in efficacy if it can be prescribed but you could ask about statistics perhaps. Thanks for the info, Steve. I can't find any mention of Abraxane being prescribed alone for PC so not sure what consultant was talking about! I don't know whether my man would qualify if he gets stage IV - although I don't see any mention of adjuvant chemo as technically there was no disease there at that point!

Didge

[Cathy]

Hi

Joanna, my partner had a break in treatment and we had a lovely summer. Oncologists will build in breaks and that can make a huge difference to a patients quality of life.

Fiona - as Didge suggests, I would ask for statistics. Nikki, who started this original thread reports that her hubby is doing much better on Abraxane that he did on folfironox (in terms of how he is feeling).

Cathy xx

[PCUK Nurse Jeni]

Hello All,

Abraxane (with Gemcitabine) is for first line metastatic (or stage 4) disease only, as per Steve's post. For someone who has had adjuvant chemotherapy, and then gets metastatic disease, this could be discussed with your clinician. We know of patients who have been in this situation and have been allocated the combination. We will look into this a bit further, and try to calrify what the CDF means by "early" disease.

Fiona - if you choose to have Folfirinox over Gem/Abraxane, then you effectively "remove" a treatment option for James, because he would not ever be able to get Abraxane on the NHS after having another combination for first line metastatic disease. Its a slightly more "cut and dry" case than Didge's BF, as James has presented with metastatic disease. I think this is the reason he has been offered this, and it is less toxic. For someone of James's age, notwithstanding the fact that he is fit, Folfirinox may prove to be more toxic, and if he has to stop the treatment because of side effects, then he can't go on to have Gem/Abraxane. Email us at support@pancreaticcancer.org.uk if you want a bit more information on this.

Kind regards,

Jeni, Support Team.

[Bowie]

Jeni,

Thanks very much for this. What we really want to know is, is folfirinox better followed by abraxane? I realise we would have to pay for it, but just want James' chances to be maximised? I understand what you are saying about folfironox being more toxic, but does he need his pancreatic tumor need to shrunkf first, it is between 2-3 cms and the lung metastises largest 16mm, plus swelling on his adrenal glands. However, he is still really well, with no pain, no signs of tiredness, just the weight loss; which has now stabilised at 1 stone. Really desperate for him to get this evil cancer out of his body. Fiona X

[PCUK Nurse Jeni]

Hi Fiona,

I will answer you in an email.

Kind regards,

Jeni.

[nikkis]

Dear all,

I have been debating about posting on my thread with our good news as I have become so frightened of tempting fate, but knowing how much joy (even tears of!) other peoples good news has given me I thought I should share.

I have deliberately not asked about Paul's tumour marker since the new year, and convinced myself that no one had mentioned them because they had risen. So I was very relieved to find out they had continued to drop. This time last year they were 1000, in January they had dropped to 56 and last Fridays they were 19! Really wish I had asked before now and saved myself some worry.

We still rarely go a week without some stress, Paul has had blood in his stools, that has been put down to clexane that he has to prevent clots, a pain in his chest, probably not had enough gaviscon and his stomach is very distended at times, but this seems to have improved since he started on VSL #4, a super probiotic. The wind has also improved since he started on this! He continues on gemcitabine and abraxane, fortnightly, a regime of his own, that fortunately our insurance will pay for.

Saturday we are off to the Algarve for a week. I am very nervous about going, but starting to look forward to it. In January, when Paul was in the hospice, I wouldn't have believed we would have any good days again, let alone go on holiday,so for others out there, don't give up hope that things will improve. We have also got a daughter through GCSES without any problems, and now just await the results.

We have been very fortunate to have a dynamic oncologist and wonderful support from our GPs and the Hospice. Paul say we are so unlucky to have to deal with PC but so lucky in so many other ways.

Cross your fingers our holiday passes without any problems. Just hope I can relax a bit!

Take care all,

Nikki

[jay]

fantastic news Nikki, you have brought tears of joy ,have a wonderful holiday,

sending a massive hug to you and your family,

love Jayne

x

[EmmaR]

Well that's is some very good news !! enjoy your holiday best you can .

Emma x

[Didge]

Wonderful news. Have a great holiday. And never fear to share the good times. We know the score but we all need good news whenever it is around! x

[sandraW]

Nicky some more really good news, yours and Paul's was one of the first stories I read through on the forum, and I always look for your posts and wonder if everything is going ok when you don't post for a while, so its really great to hear to hear your news.

I understand how you feel about tempting fate, I really do, but good news is so important to us all, I'm glad you decided to share.

I hope you understand when I say, that I think people feel almost guilty that they are doing well when others aren't, but as good news is important,it helps us all hope that there can be light at the end of the very dark tunnels we go through.

Have a really lovely holiday, you both deserve it take care sandrax

[nikkis]

Thank you ladies, this drated disease seems to pick on the kindest, loveliest people.

Nikki

[Slewis7313]

Great news indeed Nikki. I am sure your Holiday will go off without a hitch after such a turn-around in your fortunes over recent months.

Enjoy the sun (with factor 50) and keep the feet well oiled... Hot sand played havoc with mine (skin cracking) last summer in Spain.

Steve

X

[nikkis]

Thanks Steve,

Paul is packing his beach shoes. He is taking more shoes than me or the girls, and by the time we have packed them all and all his drugs etc there won't be any room for my things. The forecast is 35 degrees so at least he has agreed not to take all his jumpers!

Nikki

[sandraW]

Hi Nikki, We contacted our airline and they let Trevor have an extra bag (hand luggage) for all his medication, we put copies of his prescription in with a fit to fly letter and a letter from the diabetic nurse specialist, as he needed to take his insulin with him(not that he needed any) he had fragmin injections too. We went through security expecting to be questioned and to empty out the bag. No one queried it at all, but we flew from Leeds/Bradford our local airport, so I don't know what it would be like from anywhere else. At least you would be able to get the odd item in for you then lol, have a great time sandrax

PS Agree with Steve about the factor 50, I made sure Trevor was all creamed up, expected him to do his fore arms but no! he didn't, and he got some lovely red lumps all over them, he mentioned them to the oncologist when we saw him and he said they were definitely down to the sun.

[nikkis]

Hi all,

well we had a great holiday with no problems. I did swelter at times as he didn't want the air conditioning on. Customs was a breeze despite the fact I had diamorphine, insulin needles and clexane in my hand luggage. They did briefly check our GP's letter, but the only thing they double checked was the box of gaviscon sachets I had taken! The security at Stansted could not have been nicer, we were so surprised at how smoothly it all went. We ate out most days, something at one point I didn't think Paul would manage again, and had a family games tournament that he won, nothing beats a competitive man!

Then yesterday morning Paul woke up with a rash. We were not too worried as I remember Sandra saying about heat rash. This morning it look rather blistery, we went for Paul's chemo appointment and they think it is shingles. They have kept him overnight which he wasn't too thrilled about but his consultant felt he wanted to whack it with 24 hours of intravenous anti-viral drugs. I am just relieved it didn't come out while we were away.

On the plus side was they did another scan and again there were no changes, so there has been no growth in nearly a year and some shrinkage. Plan is to carry on with the gemcitabine and abraxane fortnightly for the foreseeable future, which reading other posts seems to be a trend, and long term chemo is a thing Paul's consultant specialises in. Paul was worried as his chemo will now be delayed by a week, but they hopefully reassured him it shouldn't make any difference.

Up and down we go with this bliming thing, but although we have our dark days, and the chemo does get Paul down, we know we are very fortunate too. I am following Steve's lead and trying to always have something to look forward too. Not brave enough to book another holiday (it was still very stressful going), so we are planning to review our wedding vows for our anniversary in September. Building up to telling our teenage girls as they are going to think we are very naff!

Take care all,

Nikki

[EmmaR]

Hello Nikki,

I still follow all the posts though I lost my hubby to this bliming thing as you called it 8 mths ago so know what you are going through and just want to wish you all the luck in the world dealing with PC you do sound positive so as Cathy always says keep on keeping on and that goes for all of you on this forum .

Love Emma xx