Help with treatment regime - patient experience

[keith johnson]

Hi there fellow ‘sufferers’ and support people

I

would appreciate a little help from those of you who have received the treatment option of Gemcitabine/Abraxane

Bit of background

2006 had surgery for Ca colon (2mm malignant polyp removed endoscopically but this showed other benign polyps along the colon so advised to consider total colectomy (for prevention of recurrence) after 6 months of dithering opted for op with end to end anastomosis (to prevent having bag) Went disastrously wrong with peritonitis resulting in two further ops ICU last rites etc with 10weeks in hospital and loss of 5 stone.!!!!

Since have had back pain on and off put down to ‘adhesions’ (from op(s) and sub phrenic abscesses)

(only relating this because it has coloured by my suspicions of medical advice as to best treatment options !!!)

April 2015 Had routine follow up tests for my Type 2 diabetes and cardiovascular problems plus CEA to exclude Ca Colon recurrence All as expected but CEA came back slightly raised !!! Because of this finding (and my previous employment as a Consultant Clinical Scientist) it was decided to do CAT scan of abdo and thorax !!!

Came back with swelling in tail of pancreas plus 3 x 2cm lesions in liver – highly suggestive of Grade 4 Ca pancreas !!!!!

This with no discernible symptoms !!!! (no weight loss, no nausea, no jaundice, eating well, usual pains from aftermath of 2006 ops and OA spine)

Other test then done e.g. biopsy pancreas etc, confirmed diagnosis (but couldn’t biopsy liver – too deep and small!!!)

Only treatment offer chemotherapy of Gemcitabine/Abraxane

I cant understand why when my health hasn’t changed much since earlier this year I need to be considering chemo (but perhaps its denial)

There seems a lot of side effects which could be debilitating/life threatening which is further deterring me from treatment.

This is causing a lot of anguish within he family as their stance is ‘its been found while you’re well and the treatment is more likely to delay progression’

If any one has experience of this treatment regime I would much appreciate your experience as it may help me be more positive about this treatment

Many thanks keiththechemist (in a dark hole!!)

[sandraW]

Hi Keith,

Welcome to the forum.

Wow, what a journey you have had so far, I am glad to hear that you are still feeling well.

I am sorry I can't help you with any info regarding Gemcitabine/Abraxane, but I didn't want your

post to go unanswered. My husband's cancer was in the tail of his pancreas too, he had surgery in sept 2013, and when they operated they found it had spread to his spleen, but no where else, he then had 23 rounds of Folfirinox chemotherapy, but he sadly lost his fight in April this year.

I think Gemcitabine/Abraxine is one of the newer treatments, and that is why you haven't had any replies it would be a good idea to ring the nurses on the site, they are amazing with their information and support.

take care and let us know how you are doing sandrax

[MSH]

Hi Keith, I'm sorry that you find yourself here.

Pancreatic cancer has a poor prognosis because it tends to spread early, and even if metastases aren't apparent it's best to assume that they're there and have chemotherapy. Gemcitabine/Abraxane is a relatively new combination which has been shown to improve survival over Gemcitabine alone.

http://www.nejm.org/doi/full/10.1056/NEJMoa1304369

The regime isn't used much in the UK as Abraxane hasn't been approved by NICE.

Has anyone mentioned Folfirinox?

[Didge]

Folfirinox would still be chemo of choice so assume you have been declared not fit enough? Perhaps get second opinion in that case? Another reason could be that technically gemcitabine and abraxane is licensed only for first line treatment so they may have decided to try that first with folfirinox as a back up as they would not be able to do it the other way round. You do need to find out why as my fella had huge reduction of liver tumours on folfirinox until sadly his platelet levels were consistently too low and they had to give up. Incidentally tail of pancreas does not usually cause jaundice and generally causes fewer symptoms until the back pain you mention. Good luck and let us know how you get on. Didge

[keith johnson]

hi SandraW and thank you for taking the time to reply I'm so sorry to here about you and your husbands experience and your loss. Wow 24 rounds of Folfirinox is a hell of a regime over 18 months !!! was he well at all over that period ??? That's one of issues I cant come to terms with If I'm not going to be well and be burdensome (both physically and psychologically) to family then this (to me) mitigates against the therapy. I suppose the question I'm really asking is do you think it was worth it ???

I appear to have a good clinical support team but i'll probably try the nurses here

Sorry to be a burden but a reply would be appreciated

many thanks

keiththechemist

[keith johnson]

Hi MSH

many thanks for your response

No nobody has mentioned folfirinox I'll ask when I go to appointment whether its because of other co-morbidities ?? who knows I think I've been offered the Gemcitabine/abraxane on the basis the latter is being funded by applying to private fund but will only be considered if use as front line treatment. If it doesn't work (or too many side effects) then presumably other alternatives are possible (even gemcitabine alone??)

thanks

keiththechemist

[keith johnson]

hi Didge

thanks for your response Again I'll ask about folfirinox and why its not being offered glad to know it controlled his liver tumours as that's the issue my oncologist is keen to tackle. Sorry the platelet count seemed irreversible !!! was he offered and alternative and did it work ??

A comment on how well (or otherwise) he was on (is) treatment would help as that's an issue I'm finding difficult to come to terms with -

thanks in advance for any response

keithtthechemist

[Didge]

Hi Keith, this is the third time I have responded only for it to fail to post! So maybe you shouldn't take much notice of what I am going to say! My fella had a distal pancreatectomy, couldn't tolerate gemcitabine at all, liver tumours appeared a few months later, was then put on folfirinox and although some people had worse side effects he didn't find it very pleasant. However, it did get rid of some small tumours and shrink the 2 largest ones. Unfortunately he then could have no more and the 2 tumours were treated with ablation and the other with targeted radiotherapy. Weeks later tumours have spread throughout his liver. His oncologist said that sometimes when chemo works but doesn't kill all the tumours, the cancer mutates and becomes very aggressive and that is what may have happened. He has declined further folfirinox as he doesn't believe it will extend his life but just make it more unpleasant. At the moment he feels ok and has just got his pain under control. This is a very individual decision though and a lot of people here pursue the chemo option until the end. Also if you follow Carl's story you will see how some people get remarkable results! it is not a decision which can be arrived at by logically weighing up statistics either and everyone tolerates chemo differently and has different results from it. I do hope you arrive at a decision you feel is right for you. Good luck and let us know how you get on. Didge

[Birchen]

Hello Keith. I have not been on this site for some time but my husband has cancer in the tail of his pancreas which when it was found had already spread to his liver and in fluid around his lungs, so unfortunately it was already terminal. Prior to this he was extremely well and in fact his oncologist could not believe the results that he had to give us. He had Gemcitabine/Capecitabine treatment and although on the day of chemo he didn't feel like playing golf he still managed to eat normally and played the next day. He was told right from the start that he would be lucky to have between 3 to 6 months but during this time he did not look ill until about 10 days before he passed away. He tolerated the chemo very well and was very lucky to have this treatment done at home. I do hope that you are able to have the treatment that you chose and good luck. Lyn x

[keith johnson]

To Birchen

Hi Lyn

many thanks for your information regarding your partner's/husband's treatment experience Whilst realising that experience is not transposable into my situation it is comforting to know that his quality of life was reasonable until near the end !!! A goal (and small comfort) in this situation

many thanks for sharing what must be a painful reminder for you

regards

Keiththechemist

[Bowie]

Keith, so sorry to hear your news. My husband, James, 70 on diagnosis on 27 March 2014 is being treated with ambraxane

And Gemcitibine. On diagnosis he had a tumour on his pancreas in the neck area, one on his adrenal gland and 22 mostly small, but 3 over 15mm in his lungs. He was really well the only symptom was weight loss and chronic severe diarrhoea He paid for a battery of tests privately, as his GP thought it was stress. Finally after colonoscopy, endoscopy, a full body CT scan showed the disease. We were devastated. He started on chemo and the ambraxane on one day and the gemcitibine the subsequent day. In the beginning he struggled with tiredness and ongoing diarrhoea and during the first few cycles would spend one day per week in bed, however, on the other days he was active. He was building an extension and he finished this, did quite a bit of decorating, gardening etc. now I year, 14 weeks and 3 days later, he is OK. Diarrhoea finally under control, he saw a gastroenterologist following advice on small bacterial overgrowth from a fantastic supporter, Leila on this site and has put on weight. The best news was the last scan, no sign of tumour in his pancreas, although there is swelling and the oncologist has said it is probably still there, just not active; nothing on his adrenal gland and best of all only 3 visible tumour in his lungs, 2 shrunk and 1 grown by 2mm. He has had the drugs reduced twice, both times in the early days due to diarrhoea and is now on 60% He is still tired, but doesn't take to his bed, in fact often comes up later than me! He makes dinner every night, I'm still working, goes over the road to our local for a couple of glasses of wine, gardening, general housework and as he's now 71, quite good. We've been on holidays and get out and about most week-ends for meals or to see friends and see our grandchildren, most days and considering he was told on 27 March 2014 by the Macmillan's nurse-we avoid this organisation like the plague- that he had 12-26 weeks max, we are feeling OK.ish. I haven't posted before as a lot of the lovely folk on here are suffering and mostly because I don't want to tempt fate. I had to get a statement recently re prognosis for our last holiday's insurance and James' Onocolgist said it is still less than 6 months( they have to base this on empirical evidence) and will continue to be as he still is terminal, stage 4, so living with this is hard. We just try and get on with our lives, but it is an emotional roller coaster and we do still cry as much as we laugh, however, we do laugh and in the beginning that seemed impossible.

I hope that by posting I haven't tempted fate for James and our life, but I did want to let you know that this chemo combination can work. I wish you and your family all the very best and hope whatever you decide it works out well for you. Fiona X

[sandraW]

Hi there Fiona, just wanted to reply to your lovely post, even though I lost Trevor I am just so glad to hear that James is still doing well and long may it continue, take care love sandrax xx

[Didge]

What a fantastic post Fiona! I know the tempting fate thing looms large for lots of people but I don't think it applies with pan can as the statistics are so bad anyway! But people do get good results like this and living a good life for as long as possible is the goal. And who knows what could be round the corner. There is always hope x

[keith johnson]

Hi Fiona

Many thanks for you lovely and most helpful post. I'm so pleased things are doing well for you both (in the grand scheme of things) and James is reasonably well and active

My greatest dread is that I have a slightly increased life span but the quality is worse

(which adds more stress to family particularly my lady Shirley - the best of loving support people). The decision making on whether to accept treatment or not is like living under 'The Sword of Damocles' Just change the length of time before it falls anyway

The more positive experience of yourself and others who have been kind enough to respond are leaning me towards acceptance of the offer of treatment

My most Grateful thanks

Keiththechemist

To save you having to look it up The Sword of Damocles (taken from the writings of the Roman scholar - Cicero)

a huge sword should hang above the seat of the decision maker(ruler)held at the handle only by a single hair of a horse's tail to fall if the wrong decision made !!!!!!!!!

[Didge]

Good luck Keith! And oh if we could only fast forward to see different outcomes how much easier these decisions would be!

[Pat]

Keith

I've registered in order to reply to your post, in case our experience might be of some help to you.

My husband has inoperable locally advanced pancreatic cancer, with no previous history of cancer. He has been on Gemcitibine & Abraxane for 9 months. He has responded positively to this treatment - static disease and blood markers down into the normal range. Side effects have been few and entirely manageable. He has lost his hair, had minor skin problems (chemo rash), and constipation sometimes a couple of days after treatment but nothing incapacitating. Importantly, his quality of life is quite good. He can still walk more than a mile (on relatively flat ground!) and do everyday chores like emptying the dishwasher, ironing his shirts and doing light gardening. We've had several short trips away while he's been on this treatment and have frequent days out. Yes, we've had to adapt because he walks more slowly and tires more easily than before he was ill but, if anything, he appreciates life more; we both do really because every day feels like a bonus.

You might consider having a cycle of this treatment to see if you are one of the lucky ones for whom it works well. The stats are all very well but they cannot tell you how you will respond to treatment.

Good luck

[keith johnson]

Hi All

thanks for previous responses and sorry not to have been in touch since start of treatment with abraxane and gemcitabine This has been a bit of a rocky ride even on 80%

drug (refused 100%) with lots of side effects such as uncontrollable BP and glucose with breaks in treatment due to hospitalisation with ? MI and high temp ? infection. Despite this and only having 2 full (and one part) cycles of treatment a scan was done which showed no significant deterioration on primary (slightly smaller) and 3 x2cm secondaries (2 slightly smaller one slightly larger !!!)

decided to continue with treatment at 60% to try reduce side effects

so now into first cycle of round 2 (sounds like a boxing match)

My continuing problem is lower urinary tract infection which keeps recurring

despite bouts of antibiotic (which give me diarrhoea ob top of that from tumour chemo so not good)

I seem to remember reading somewhere on this form of male patients who seem to have this problem when on treatment but I cant find the discussion and whether it was due to some unusual and unresponsive infective organism !!! Perhaps if any one out there has had such a difficult treatment experience with a male patient they could enlighten me as to what caused it and how it was dealt with I would be very grateful

Thanks in advance

Keith the chemist

[sandraW]

Hi Keith,

My husband didn't have any urinary tract infection as such but he did have an ongoing problem with a fungal infection on his penis, which they put down to highish sugar levels, he became type 2 diabetic before he was diagnosed with PC. He had different creams and tablets, a few of which really upset his whole system sickness diarrhoea and feeling dizzy. In the end he just used the cream Canestan and eventually it did clear up, we did have a discussion on this on the forum, but I can't find it either.

Perhaps you could have a word with the nurses on here, they are really approachable, and very knowledgeable, you can contact them on 0808 801 0707. take care sandrax

[Didge]

Was it my 'sore willies, men only' post?

[PCUK Nurse Jeni]

Hi Keith,

My name is Jeni, one of the nurses working on here.

Are you diabetic? Sandra is right - recurring urinary tract infections are usually associated with diabetes, and high levels of blood glucose, and urinary glucose levels as well, which can harbour fungal infections.

What exact antibiotics have you been on, and assume they have sent off a specimen?

Perhaps they need to try a different type of antibiotic?

Plus/minus some anti-fungal cream, as Sandra said.

Kind regards,

Jeni.

[sandraW]

Didge,

YES IT WAS!!!! still makes me smile thinking about it, I asked Trevor if he minded me putting it on here and he said no, all the nurses at treatment room used to pull his leg about it, so he wasn't bothered, I think it was Steve who asked, but I'm not sure, sorry Steve if it wasn't you, take care sandrax

[keith johnson]

Hi sandra W and Jenni (nurse)

yes Im Type 2 DM usually well controlled but on treatment and lots of steroid given my glucose becomes v high and hard to control

I've been on trimethoprim and (separately) amoxicillin both of which have given me diarrhoea which along with diarrhoea from treatment gives a double whammy!!!!

I've now been on nitrofurantoin which has not given me diarrhoea but my soreness and redness has just returned !!

looks like a need to try canestan cream (I'm surprised those offering me care are unaware of this !!!!)

thanks for advice and any further tis would be most helpful

regards

Keith the chemist