Totally in awe of my wonderful Husband!

[Guest]

Hi PW,

Nice to see you on here.

Dad had 3 collapsed lower lumbar bones. He felt his break when he bent down to pick his shopping up. The taxi driver wouldn't help him. He was in absolute agony with it. I thought it was just sciatica. He couldn't bend to put socks on and needed a stool at the side of him to him up and down. Once he was up, he was ok. The lumbar bones are the ones you bend with.

He had morphine, but he overdosed on it as he was desperate for the pain to go away.

Do you know how many liver mets he has?

Leila xx

[Proud Wife]

Good to see you on here too Leila!

He has multiple liver mets, the largest one we've been told of is 7.4 x 5.7cm so if he has multiple, I'm concerned about the amount of cancer free liver. He has no jaundice or itchy skin by the way. He also has spread to adrenal gland (one met) and who really knows how advance the spinal infiltration is - suppose he would need a PET or MRI scan for that?

Oh your poor Dad and shame on that rotten taxi driver. It makes me really sad to hear he was in so much pain. I must thank my lucky stars that hubby has none at all. xxx

[MSH]

Hi PW, I'm sorry to read of your problems and hope your husband continues to feel ok in himself. I'm afraid that only professor will be able to answer your question about the nanoknife. I know that some hepatic metastases don't necessarily preclude treatment, but this is probably dependent on their size. When I first contacted him I had a bony secondary but he felt able to go ahead because it wasn't absolutely typical. It subsequently spread through several adjacent bones but fortunately at the moment is quiescent after radiotherapy and chemo.

I can help with some of your other questions. Collapsed vertebrae are actually quite common and mean the usual disc shape weakens and becomes wedge shaped. It is often painful initially but settles with time. The usual cause is thinning of the bones though it could indicate tumour involvement, especially at thoracic level. Dilatation of the pancreatic duct is usually secondary to obstruction. There would only be the risk of jaundice if the biliary duct was also obstructed.

Hoping your husband responds to his treatment.

Mark

[Proud Wife]

Hi Mark

Thank you so much for your comments.

CT report says new T7 infiltration and associated collapse without osseous retropulsion so I am assuming it's tumour involvement.

Just one last question if you wouldn't mind please. After 1 year, do you find it strange that they now want to do a liver biopsy? My hubby is very nervous to do have a biopsy as he's really worried once you cut into a tumour it spreads more? What's your view please?

[Proud Wife]

Oh and kidney stones and extensive colonic diverticulosis whatever that is, for good measure! At the moment the kidney stone that has dropped is not causing any hydronephrosis but I'm presuming it will need to be removed before any more chemo.

[MSH]

The liver biopsy does seem a little unusual. They may want to exclude other causes. I'm not sure about the risk of seeding or spread. From memory this could be more of a risk with certain tumours such as melanomas, less so with others. I think the risk from kidney stones, assuming they're not affecting function would be the risk of infection, but probably not an absolute contra-indication. Colonic diverticuli are extremely common and usually of no significance, though they occasionally become infected.

[Proud Wife]

Thank you so Mark, much appreciated. I'm going to stop over thinking things and wait until we know more.

[Guest]

What makes it cruel PW os that Dad never had cancer pain until the last few week. Symptom wise, he did amazingly. Which makes everything else he had so very cruel. If he didn't have other underlying problems, he would have had quality of life instead of being trapped in his house, just lloking outside every day.

Embrace the fact your husband doesn't have pain. Don't worry about the things he has that aren't worrying him. Again, easier said than done I know.

Leila xx

[Proud Wife]

You are absolutely right Leila thank you.

Can I just say you've been such a help to me over the past few weeks, I only hope I can "repay" the compliment when it comes to next month and you have the first anniversary of your Dad's passing. If there is anything I can do, you only have to ask.

I can tell from your posts just how much you loved your Dad and I might be wrong but I think you are probably nearer my son's age than mine, as your dad was around the same age as my hubby. My son absolutely idolises his dad - they have such a close relationship so I can understand how his loss affects you.

I think talking does and can help a lot xxx

[Guest]

HI PW,

Thank you for your lovely comment. I do love my Dad very much. He was my absolute world.

I may not be always logged in here, but more often than not, I am reading. So will always be here if you need someone.

I am 37 by the way.

Leila xx

[Paige]

Hi PW,

What incredibly difficult news for you to hear and you should absolutely not have had to heard conflicting news, that is unacceptable. I have always thought that being strong is not about not crying, I have done so much crying! But about picking yourself back up and I can see that is certainly what you have done, you should be so proud of yourself too! My heart breaks for you and I understand how hard it is to hear such difficult news but I hope I do not offend when I say that I really feel there is still hope there for your husband, he clearly responded to folfirinox so well previously and I can't see any reason why this won't be the case again. I know all the uncertainty is so hard to bare though but my absolutely best wishes to you and your husband for another brilliant response to chemo. My Dad had a massive gap off of chemo and eventually the primary tumor doubled In size and multiple secondary lesions appeared but he then got back onto chemo and had a brilliant response withy secondary tumors no longer visible in later scans and the primary tumor massively decreasing In size. Again the best wishes for your husbands further treatment.

Paige x

[shelda]

Hi P, sorry I'm only just catching up with everyone on here. Sorry to hear that things are rough for you, how bad is it that you were told the wrong thing, I would be fuming!!!! So unfair he's having to suffer with these damn kidney stones on top of everything else. Sending you big hugs xxx

[Proud Wife]

Good to see you back here Shel, how's things your end?

Thank you very much for your kind words and inspiration Paige. Your dad was a legend on here and I so hope my hubby can follow in his footsteps!

Something I've just picked up on, over on Ruth's thread, is a MDT. To the best of my knowledge, my hubby doesn't have one. Now I don't know if that's because he's a private patient (and the only reason we had BUPA cover was that we were working exceptionally hard before diagnosis and couldn't afford to be off work ill)? I am quickly starting to question whether it's worth having insurance, especially when my hubby's first urologist operated for financial gain prior to diagnosis.

Hubby literally goes for a CT scan and then sees his oncologist a few days later for results. His letter is copied into to GP and gastroenterologist but that's it. I am really concerned that he's not yet had a biopsy and having looked at the very first letter we were sent, it did say that a biopsy should be taken "at some stage" to look into the possibility of biological treatment. We are under the impression that it's just the oncologist who decides on treatment but when I read NICE guidelines, it should be a MDT. Does that only happen if you are treated under the NHS then?

Please forgive my ignorance but I'm just trying to ensure hubby gets the right treatment. After the misdiagnosis at the beginning (and radiologist had to pay compensation as negligence was proved) we are both "once bitten, twice shy".

Thank you very much to everyone for their continued support. Tomorrow can't come quickly enough for me! xxx

[PCUK Nurse Jeni]

Hi Proud wife,

MDT - multidisciplinary team. These sit in every hospital for most things - you have local MDT's, where the team at that hospital discuss things which can be dealt with "in house" , so to speak. Specialist MDT's (SMDT) are those whereby specialist input is needed in order to make the most favourable decision in that specialism.

For pancreas cancer patients, their cases HAVE TO be discussed at a specialist MDT - every local hospital will refer onto a specific specialist centre - there are several up and down the country.

There is more information here about these:

http://www.pancreaticcancer.org.uk/information-and-support/treatments-for-pancreatic-cancer/your-local-specialist-centre/

It can be a bit different in private practice - in theory, they should still be discussed at the SMDT, however, whether every case is discussed in every part of the UK is not something I know the answer to - but, realistically, they should be. I have personally sat on SMDT's where private patients were discussed, and I know some of the other nurses on here have the same experience.

Its a question you can easily find the answer to by simply asking the oncologist - has my husbands case ever been discussed at a specialist MDT? You can also ask to see the outcomes of these meetings - they should be clearly recorded if discussed. However, it has to be said that many are discussed at the time of diagnosis, but inoperable cases may not be discussed again, unless there is a clear need to seek the advice of the specialist team. Mostly, patients on chemo are then managed by the oncologist.

I hope this helps?

Kind regards,

Jeni.

Pancreatic cancer Specialist nurse,

support Team.

[sandraW]

Hi PW,

I noticed you have not been around for a while just to let you know I was thinking of you both and I hope things are ok, take care sandrax xx

[Linda G]

Hi PW, thinking of you both.

Linda G

xxxx

[Proud Wife]

Aaaw thank you everyone.

Have been feeling quite low past little while which is why I've not posted. Hubby had MRI scan and biopsy last Friday. We have a provisional appt on Thursday afternoon to hear results. His palliative care consultant is going to arrange for me to have counselling support at local hospice now which is good because I don't really have anyone other than this forum to offload my thoughts and fears. I hope it will help because I really don't want to be crying the whole time but I just find it all so incredibly sad. I thought he was invincible until the progression. He's not himself at the moment, whether it's another infection brewing or the progression I don't know but this morning, he struggled to get out of bed and goes all day without eating until the early evening and then he can only manage child like portions.

He says his taste buds have recently changed. Has anyone experience of that outside of chemo? i can understand if he was having treatment but the last chemo was almost 3 months ago now and his taste buds recovered from that ages ago.

Also, i was under the impression that liver biopsies were taken from the side of the body but hubby's was taken from in the middle of his abdomen. Again, anyone have any experience of that? I think it's because the largest met on the left lobe of the liver is around the middle of his tummy and if it's pressing on his stomach, perhaps that's why he feels so full so quickly?

So many of you on here are so strong, how do you manage it?!! xx

[boa]

PW I'm really sorry to hear you have been low and in the circumstances it's understandable and I can really empathise. I think everyone's experiences can be different both the patient and carer and getting counselling now will be good. Something with hindsight I might have welcomed.

On eating patterns, yes, outside chemotherapy my husband did have eating issues. This was a big worry to me and I used to press him to eat to the extent he would be pleased if he had eaten half of what I put down. I now see this probably didn't matter. My husband's taste buds changed after his Whipple but it seemed that as the disease progressed his eating habits also changed.

I can't comment on biopsies as I have no experience of that but I'm sure someone can help.

Try to be good to yourself. There's not any point in saying not to worry as we all do. But do come on here so we can support you. As you know we all understand the situation.

I hope you get the best possible news at your appointment.

Catherine

[Linda G]

Hi PW, so sorry to read you are having such a difficult time and I know exactly how you feel. Everything is so hard isn't it? Coping with your own and your hubby's sorrow, sadness and grief, coping with the physical demands of caring for your hubby. I think crying is some sort of release and to keep it in is like keeping the lid on a pressure cooker, you just need to let it go, sometimes in private and sometimes as a couple. Stewart and I cried buckets!.

Stewart also complained of changes to his taste/interest for food as the disease progressed, many months after chemo was abandoned. He also had a liver biopsy and that was from the front of the abdomen so perhaps it depends on the surgeon/location of the tumor. Don't ever think you are not strong! I don't know how anyone of us on here cope with this, but we do! and we do it well! When you love someone you find the strength from somewhere. Thinking of you both.

xxx

Linda G

[Proud Wife]

Thank you Catherine and Linda.

We have just had results of MRI scan which is okay. Unfortunately, the biopsy didn't work and the doctor was failed to take a bit of the liver that contained the cancer cells which I know can happen so we are still none the wiser! We were offered another biopsy or to proceed with chemo and hubby of course chose the latter. So it's Gemcitibane and Abraxane here we come next week!

Thank you so much for your continued support xx

[Linda G]

Hi PW, Good news about the MRI, I bet you were both relieved! Disappointing about the biopsy though. I didn't realise that could happen. Wishing you both well for the next round.

xxxx

[Guest]

Hi Proud Wife.

Pleased the MRI was ok, that is a relief.

Completely agree with your husband, get straight on with the chemo. He has wasted too much time waiting for biopsies, and time is not something people with pancreatic cancer have to waste.

Good luck on the abraxane and gemcitibine. Dad was on gemcitibine and tolerated it very very well. Though everyone is different.

Leila xx

[Didge]

Even if they had got a biopsy from the tumour, there can be different cells in different parts of the tumour so it is not always as helpful as it might be. I once was given advice from an eminent oncologist via a third party who said about pancreatic cancer "every day counts!" I really believe that is not taken seriously even by specialist hospitals. A couple of weeks can make an awful lot of difference and whilst it is unavoidable sometimes, as in available dates for surgery (we had to wait an extra week because the surgeon was on holiday) if it is a question of bring appointments and treatment forward, getting scans done etc. I agree with Leila -DON'T WASTE A SINGLE DAY!

xx

[Proud Wife]

Thank you Linda, Leila and Didge.

I totally agree with you about not wasting a single day but my hubby is very strong willed - exceptionally strong willed actually and sometimes I just have to back off. It's really hard because I know how every day counts but he says he trusts his team and I have to respect that. All I can do is plant the seed and leave him to make the decisions, otherwise we'd spend the whole time arguing and causing bad feeling.

When oncologist said spine was okay, we thought meant it the cancer was contained within that one vertebrae. However, we got a copy of the MRI scan a couple of days ago and it shows that the vertebrae collapsed due to osteoporosis and there's no evidence of spinal metastases which is brilliant news. So at the moment, we are dealing with progression in the pancreas and liver mets. We will chase up treatment on Monday, there's no reason why he can't start mid week. Very curious and nervous at the same time as to how he reacts to gem/abraxane. Hubby's not having a good day today, when he says he doesn't feel super, I know he's not well. It seems at the moment he has one good day and then one bad. Currently eating well though and not losing weight so that's good.

We had a visit from our Specialist palliative care nurse yesterday which was good. She's going to come back in the next week or so and see me privately, so that I can talk to her without fear of saying the wrong thing and upsetting my hubby. He doesn't want to talk about cancer at all, whereas I have to be practical and know what helps out there etc for when we will need it.

Again, thank you so much for your support, this forum is amazing. Have a good weekend all xx

[sandraW]

Hi PW,

Your hubby sound much like Trevor, Trevor's attitude was if you don't believe it, its NOT happening. We had a MacMillan nurse who was brilliant she sussed him out straight away, when she wanted the district nurses to be involved just in case we ever needed them she said to him could she contact them just for my peace of mind, and even though she did call to see us, she use to speak to me regularly on the phone to make sure everything was ok, and if we needed her, which we never did.

Great news about the spine, and hubby's eating Trevor was much the same, and he continued to stay well until the last 6- 8 weeks when there was firstly a slow deterioration, then very rapid at the end.

Your husband is bound to have good and bad days, we all do, but I understand your worry when he is not feeling too well, I was exactly the same, its all ups and downs, its exhausting.

I hope the Gem/Abraxane suits him and that it shrinks the tumours, lots of people do well on it, we

never got the chance to try it. take care love sandrax xx