Chemo for symptom reduction?

[Didge]

I think we are about to enter the phase where we have to have to consider the next step. Bf operated in Oct and started chemo before Christmas but he had to stop for 3 weeks after 2 doses because of infection. During that time cancer symptoms have returned which is especially annoying as before chemo he was very well, tumour markers 'normal' eating normally, colour healthy. Looks like the chemo knocked out the immune system and then stopped so was not killing anything either. Missed rare quality time together over Christmas period (we do not live together). The decision as to whether to continue with chemo 'to extend life' or to say no, is looming. But if he has pain now, could chemo lessen that or will the side effects from chemo outway any benefits? I realise these are questions which will not have universal answers but would welcome any experiences. he does not respond terribly well to opiates.

[J_T]

Hi Didge sorry to hear bf's symptoms have returned. Whether to continue with chemo is a tough decision for anyone. Yes it could ultimately relieve symptoms but in our case, although Ray went onto the supposedly better tolerated regime, he was dogged with infections and the decision was in effect made for us and treatment stopped because he was just too ill to attend sessions.

I hope you can get bf's pain under control and move on from there.

Best wishes

Julia x

Edited January 20, 2014 by J_T

[nikkis]

Hi Didge,

Really sorry to hear you and your boyfriend are having such a rough time again. My husband is in a similar position. He had surgery last May, and the started chemo in August. He has had issues with pain, but we are never sure whether his pain is caused by the surgery, chemo or cancer. We have now changed his chemo in the hope he will feel better and that this will halt the cancer for a while. There are people here who have definitely felt that the chemo has improved the pain. Our feelings for now is to give it a shot as we are not ready to give up, but it is an individual decision and as Julia says a tough one.We have found abstral good for pain, which is not an opiate. We have had lots of support from our local hospice in finding the right balance of painkillers, and would recommend linking in with a hospice or Macmillan whichever is in your area as they really are the experts.

Nikki

[Cathy]

Hi Didge

I can only offer you advice from my own experiences with chemo. For us it did the trick first time around for symptom control.. After 2 cycles (of folfironox) Jonathan stopped needing pain meds and that lasted for quite a long time, maybe 6 months? Jonathan hated chemo but it bought us time and gave him a good quality of life and for us both some wonderful times after he'd completed the sessions. Ultimately it is a balancing act over how well the person tolerates the chemo against the level of symptom control they get but if they can tolerate the chemo side effects my advice would be to go for it.

Cathy xx

[Didge]

Just had the result of the scan and it is clear and weight was the same as last week so the weight loss seems to have halted again. Now totally baffled as the feeling of fullness and not being able to eat much are the symptoms we started with before diagnosis! So we are continuing with the chemo. But there is clearly something not right and he is eating way under 1000 calories a day.

[PCUK Nurse Dianne]

Hi Didge,

I will answer 2 of your questions. Most often patients are given chemotherapy in attempt to stop the progression of the disease, and in hope that it will shrink the tumour. Also chemotherapy can be given for what is called 'palliative effects'. This means that it will not cure the disease, however there may be the chance that the tumour will shrink somewhat, and in doing so the patient may have less pain. Also, symptoms can be assessed on a weekly basis in the oncology clinic, regular contact with the oncology team is good for patients, and often issues may be addressed more quickly. It can allow for more frequent review of medications and appropriate changes made to manage symptoms. Patients also benefit from the regular contact, as often those patients who do not have treatment may feel isolated as they are at risk of being seen on a less regular (ie some report on a 2 monthly basis) basis, and could have benefitted from earlier intervention.

You also mention the 'feeling of fullness' and lack of calories. I wonder if your boyfriend is taking pancreatic enzyme medication, as this will surely help to decrease the symptoms that you are describing. Please feel free to be in touch with us if you need some more advice about this on our support line. This is such an important aspect of care, and patients are not always aware of the enzyme replacement. Proper management should then resolve these symptoms and you may find that his appetite improves and you are also able to increase the calorie intake as well. Hope this is helpful and don't hesitate to be in contact if we can help (ph: 020 3535 7099 or support email as follows -support@pancreaticcancer.org.uk).

Dianne

Specialist Pancreatic Cancer Nurse

Support Team

[Didge]

Frustrating times! bf only had 3 cycles of gem so far but only managed 2 doses out of 3 for cycles 1 and 3. First bile duct infection, then gout, then gout followed by the worst so far, cellulitis so hospitalised with IV antibiotics with no end in sight as it's stubborn. This is the time when life could have returned to 'normal', the cancer free period before it is likely to come back. Also does not look good for any heavier duty chemo that might be needed sometime in the future. Realise others have worse time but feeling that we are not getting any quality time when we could be and also chemo lowering immune system without being able to take the full dose!

[J_T]

Hi Didge sorry your bf seems to be having a tough time of it, I know what it's like when nothing seems to go right! I do hope he picks up a bit and you can get some of that quality time you deserve.

Julia x

[nikkis]

Hi,

I know how you feel, whenever Paul's pain is under control, something else happens.He had a swollen arm ,they thought it was a clot, couldn't find it, treated as cellulitis but eventually found the clot. Then he has had an abscess where he had an injection grrrrrr. Hopefully though the chemo your boyfriend has had, and the surgery will keep the cancer at bay.

So just hope that things improve again for you both soon. Surely on any roller coaster ride there will be some ups!

Nikk

[Cathy]

Aw Didge,

I know how frustrated you must be feeling. It seems sooo unfair.

Just hope that your boyfriend feels better soon and gets back on course with treatment

Cathy xxx

[Didge]

Thanks, guys, for your replies. I means so much to know you are 'out there'. He's come out of hospital now but no sign of seeing him yet. We live 50 miles apart!

x

[Guest]

That's the worst thing isn't it, the distance. I'm 90 minutes away, don't know what that is in miles, and I don't drive.

Hope you can get to be with him soon.

Leila x

[Didge]

Thanks Leila. He was self-employed so lack of finances now a huge stress in an already nightmare situation. Not likely to see him before next weekend if then.

x

[Guest]

Oh no, that's terrible. You must feel feel absolutely worn down by that. When you do see him, do you stay over for a while or do you need to come straight back?

Leila x

[sandraW]

Hi Didge sorry that you are so far away from your boyfriend when you just want to do all you can to care for him. On a mercenary note you do know that he is entitled to benefits, attendance allowance for starters, that's automatic when you are diagnosed with P/C has he applied for all he is entitled too! he has enough to worry about without financial stress. Hope you can get together soon sandrax

[Didge]

We see each other for couple of days at a time, although some of that is spent in hospital waiting rooms! He has to come down to me when having treatment but at moment can't afford to come at other times. He is not entitled to AA as his GP says it is 'too soon' to class him as terminal. I think you are supposed to be in last 6 months!

[sandraW]

I don't think that's true my husband had had surgery and was cancer free when McMillan applied on his behalf, (it has since returned to his liver), and PC is one of the cancers

that automatically qualifies for AA as the GENERAL life expectancy is ONLY 6 months, The gentleman explained that they review every 3 years and of course if you make a spectacular recovery, and miracles do still happen, you would then not qualify anymore.

But as your boyfriend is having financial problems and he is entitled to help please get him to apply, Citizen's Advice, McMillan or directly to the DWP I am sure he will be awarded it, and they can advise him what else he is entitled to. Take care sandrax

[Slewis7313]

I had the conversation with my mortgage protection insurers last year. They said 12 months was a general guide to be classed as terminal. My discussions with the local NHS staff suggested they could put an appropriate document together if I was in need of financial support. I am sure your boyfriend could get something if the right people are approached. It sounds like a call to Macmillan may well help. Shame the GP is not pushing on your behalf now when it is really needed.

Steve

X

[Cathy]

Hi

If he has advanced PC he would be entitled to PIP (formerly DLA). This isn't means tested. If you ring for a form the benefits agency will date stamp it and it will be backdated to that date. It can be fast tracked by the GP or oncologist completing a separate form. If there is a terminal diagnosis there is a box that should be ticked which will mean that he would get the maximum entitlement.

If he isn't working or working only very little he might also be entitled to Employee Support Allowance... Again the form that the GP etc fills out for PIP will fast track this as well.

If he qualifies for the max amount of PIP he might also find a blue badge useful and/or a Freedom pass and taxi card (apologies, I don't know if these latter 2 are just for London residents).

I've added a link below you might find helpful. There is a benefit adviser link which should flag up what benefits he might be entitled to.

https://www.gov.uk/browse/benefits/disability

Hope this helps.

Cathy xx

[PCUK Nurse Jeni]

Thanks Cathy for all your help with the benefits advice.

Jeni.

[Guest]

Yes, thanks Cathy.

My dad is having trouble getting benefits. They are sending out so many forms for him, and not sending him any money. I will pass this on.

Leila x

[Didge]

Well we have tried to get the 'automatic' benefit which PC sufferers get to no avail. He is classified as locally advanced, borderline metastatic. However, as was pointed out to him today, there isn't a trace of cancer which can be detected at the moment. This is of course good news. And his eating has finally returned to normal even though he has only managed to complete one cycle of chemo due to the constant infections. However, churlish though it may sound, the enormous stress of having hardly any money, not able to pay bills, buy food, put fuel in the car to get to his appointments, never mind any of the small luxuries which make life a little more bearable in a dire situation like this, is very hard to bear!

[sandraW]

I m so sorry, that is so unfair, we just called into the Mcmillan health care at our local hospital specialist centre, and were chatting to one of the specialist nurses there when he

asked if we had applied for attendance allowance, and a blue badge. When we said no, he just filled in the form for us, he hadn't even looked at Trevor's notes, as I do think they have access to them, Trevor signed them and that was it.It is so wrong, like you say he has more than enough on his plate without financial worries,suffering from this dreadful disease is bad enough, without added problems. I am glad he is eating better now

and hope he continues to feel well and that there continues to be no trace of disease. lets hope he can get back on his chemo soon, take care sandrax

[J_T]

Hi Didge

I find this diagnosis a bit confusing. Your bf is locally advanced? Locally advanced pc? Ray's initial diagnosis was locally advanced pc and it was the oncologist who told us about the DLA which you get under special rules if you are deemed terminal (not expected to live beyond 6 months I think it says). Ray survived for 7 and still got the DLA, I think others got it for longer but no doubt they will correct me if I'm wrong! Have they given him any kind of prognosis? Have you been in touch with Macmillan? They know all about this stuff too and ours filled out the forms for us. By whom has it been refused? I would keep pursuing it if I were you, as you say travelling expenses etc can be costly.

On the other hand great news that your bf's appetite has returned, that is good and I hope that continues!

Julia

[Cathy]

Hi

It does say 6 months on the form but who can say when filling out the form? I think it's just a way of fast tracking it. Jonathan got his DLA for 13 months. My personal advice would be to apply, there is nothing to lose by doing so.

Cathy xx