Hi Renee'
It is an awful shock to get an MM diagnosis. Particularly when they accompany the diagnosis with the fact they cant cure it. BUT they an treat it and there are lots of things to be taken to get it under control. Don't worry about the quantity of tablets they all work in synergy with one another to do what is needed to knock the cancer on the head. I know from experience that once the medication gets underway and start to show results the shock subsides substantially and you get into learning mode. Learning what tablets to take when and what each of them do. What side effects they each have, and how to counteract the side effects.
Its a steep learning curve and once the results start to come in the fear subsides. Your Mum will get her life back, it will be different and she may be less active for a while but once she is responding she will get back to her old self. there may be limitations but not too great. The brakes are on at the moment but soon they will be loose and she can get back to her old self.
The dark and the middle of the night are dreadful times for all of us when we are confronted with MM in a loved one.
Put your mind to planning a holiday or treat for Mum when you have dark thoughts the planning takes your mind off the subject. Things will get better and time helps heal.
Take Care Min
Hi Chrissie
How are you? very worried I suspect and you have to take care of you as much as your husband. Its not easy but if you don't look after yourself you wont be able to care for him. Try and take some time out if possible and just escape the turmoil.
My husband was a keen DIY r and keep fit fanatic who was reduced by 4 and a half stone and 4 inches shorter from MM.
I recall trying to get him to eat and he too was shaking a lot and bunged up from too much morphine and pain killers.
Try some fresh figs or dried ones. prunes all the old fashioned natural remedies. you will find that once he has 'been' and evacuated his bowels he will gain something of an appetite small and often for meals serve them on a tea plate and he will be less likely to shove them aside.
Contact your GP and tell him the problems with oramorph. There are lots of other pain killers he can have with kidney damage9my husband has that too as well as a heart bypass) Quick remedy for constipation is pessaries you buy across the counter in Boots. Work instantly well almost instantly LOL Keep up his fluids as this helps with constipation too.
the shakes will stop when the drugs have had the opportunity to do there thing. He will get better it takes an awful lot of patience as its a slow long haul.
Get some high calorie powders from the dietician they are very beneficial and I am currently putting them in soup, porridge and gravy and custard…. Not all served at the same time but they are absolutely tasteless and work wonders compared to the awful drinks.
7 up is a wonderful way to rehidrate with lots of water too if possible but tea is good too. as long as its wet and not alcohol
Have Faith in his ability to come back and fight and things will get better.
Do you have any family who can help you? Sorry lots of questions but believe me I know how you feel as indeed do a lot of wives and partners an children and husband of MM sufferers and we will try our very best to help you if we can. Most of us have been where you are and understand totally how lost you must feel.
Take Care Love MIn
Im so sorry Bridget,
I thought the Marie Curie nurses were able to provide beds at home. And or Macmillan!? I think they may require some notice to be able to.
We have a loan equipment department in the council for these type of things here.
Its so sad that he has had to go away from his home particularly at his age, he belongs to a generation that expects to have his last days at home and its dreadful his final wishes can be disregarded. One hopes he is comfortable and your MIL is being looked after too. Im sorry you find yourself having to post about this but if it helps to take the load your more than welcome and we do understand your concerns.
Take Care of your Hubby too,
Love Min
I think your absolutely right Dai, everyone starts with CDT unless there is a problem. Nice are very clear about it being 1st line treatment. Its almost been a your getting it wether you like it or not. drug until the X trials
I personally feel that whilst Peters consultant is doing his best its the best that NICE will allow him to do. Almost an ….if at first you don't succeed try something else. How many people have we heard on here saying they wanted to go back on what had been a successful drug, when they relapse only to be told its not allowed? Peter wasted a lot of time on Velcade that did more harm than good in his case, and because of the NIce rules re 6 cycles come free if it doesn't work, they kept on giving it to him long after it stopped working.
On reflection I feel angry that my husband got mm and more angry at the NIce route the clinicians are obliged to go down. They know what is needed but the suits want to save money.
I watched a bit of the BMA conference on news this morning and they said it all. Loud and clear. But is this government listening, anymore than the last lot?
Trouble is the patient has no power. Now thats where you come in and gird our loins for a fight and a protest. No breaking windows wearing a hoody needed.
MIn
We are not sure Dai, my limited understanding is…… because he did not get his light chains to zero last time they intend to attempt that this happens this time. Soooo it may be that he has to have another mega dose of melphalan before the one prior to transplant. Ideally they want to avoid infections and his needing lots of blood products. Meanwhile he is back on the thalidomide and it seams that it and the melphalan are doing there thing. All in all his blood results are really good for example
prior to melphalan wbc 28.11 hgb 12.2 platelts 42 neuts 1.59 RBC 3.42
after wbc 2.33 hgb 10.5 platelets 26 neuts .54 RBC 2.98
Peter has said he want to put it off as long as possible, given the fact that he was never going to be able to have another sct due to previous 'failure' so watch this space..
Very interesting fact following
My daughter has a friend who is a plastic surgeon who had a skiing accident and crushed two vertebra. Now, he got a pretty complex and light weight back brace from the US of A to allow his vertebra to heal without carrying the weight… He has lent it to me for peter to try (same size persons) But he went on to tell Emma that it has been discovered that the fat that plastic surgeons take from people who want to lose weight contains a lot of ……wait for it….stem cells.. Emma was telling him that there will be no further opportunities to collect or harvest stem cells from her Dad and the Dr said that this was a new technology within the plastics department but …..
People who have there fat reduced by removal are having the stuff spun in a centrifuge and the stem cells are collected and stored for the future … This is happening to perfectly healthy people. He travels around Europe for conferences on this subject and the swiss are developing it further.
He is going to ask questions on our behalf as to wether the fat can be collected from people with MM who are unable to provide cells by usual method of harvesting.
It may be that some people wont be able to benefit from this type of harvest… Especially if your skinny LOL. But it is a new concept that has never been looked at before and some benefit to be had from being overweight!
Love Min
I like the sound of you and your partner in crime scrumping strawbs… I have been away to visit Grandchildren and our adventure was to go to Stratford on Avon where I parked the car and forgot where!!!!! The poor children will be dining out on the story in years to come. They are only newly 6 and 7yrs old. It took so long to find it we were exhausted and I was well stressed but it was Fun.
Sorry about Gordons hip. But at least he is happy.
Love MIn
Hi Gill,
I was wondering where you had got to and this explains why we had not heard from you for a while.
I hope Stephen starts to pick up soon, I know how difficult it is to watch them feeling so poorly. Peter had his 1st GCF injection today following mega melphalan last friday and felt rather sickly for a few days but has not been too ill so far.
I think its hard to remember how it was last time as the memory makes you forget the bad bits. Make sure he keeps topped up on sicky tablets.
Give him our love best wishes for a swift recovery
Love Min
Hi Dai,
sorry to hear your not feeling too perky, Hope it gets better soon. Peters soda stream was bothered by velcade and his GP gave him some rather nice tablets that returned it to normal. Think they were something for an enlarged something or other you men have, it did work a treat so if it persists see your GP he did tell them on the day unit but they were not too bothered, as the tests all showed no problems.
GPs are more used to dealing with day to day problems not related to the mm so might be worth a try
Min
Hi Marion
There is nothing much more I can add to the excelent advise of all of the above, however one of the things that I learnt at a myeloma infoday was that the people who are on trials, are having more personal attention than normal patients and it is thought that this very fact was a positive one from the patients point of view and consequently most patients respond very well. It is not clear if they are responding to the drugs or the additional persanal attention which in itself brings about a sense of well being and being well looked after.
I suggest you speak to Ellen on the infoline and be guided by her advise as an independant expert. You can tell her more about your dad and his state of health. She will be able to guide you along the correct pathway, whilst leaving the final decision to Dad.
Min
Dai
I think your songs are a lovely way of putting the mm aside for a while and very welcome too, your talents are amazing. Long may they entertain us.
Min
OMG Shirley,
What you playing at? you go to all the bother of having a special stem cell transplant and then you decide to learn to dive without water. :-S
I think you just like hospital food and wanted to get back in there!:-/
Thank god your Steve was there,when you needed him. I hope your taking it easy and wearing a big elastoplast, or no one will know what's wrong with you!
Take it easy and get well soon, I imagine you have had all the jokes you can stand. So just relax
Love Min
Peter got a quick phone call yesterday to say they had a 'slot ' free due to a cancelation. Today he had is 1st mega dose of melphalan. Taken with an injection of anti sickness and 2 iced lollies…..
We came home and he had had his lunch on the day ward and was starving so had a cheese and tomato sandwich.. but only managed to eat half of it before feeling like a hug of the big white telephone!
He has had his sicky tablet and now his dinner of mince and tatties (his request) feels a little sick but fighting it off with his usual aplomb… Hot flushes and mouth watering going on. So watch this space for more updates. Not expecting it to have any detrimental effect for a few days and back next wednesday for GCSF injection/s
Fingers and toes crossed again.
Love Min
Eve you cant leave me in suspense like that, you have to tell me where you bought on line! I need all the help I can get as cant concentrate at the moment.
Peter is going in tomorrow for his 1st mega dose of Melphalan.. timing as usual stinks as I had plans to go to granddaughters birthday..A mere 250 miles and several nights sleepover. Never never make plans as they always get knocked on the head. But watch this space and may still go as from experience I know it takes a few days before it kicks in .
Seriously Eve send me a private message with the details of the web sites please. I can have one of those lovely pull out larder units if I manage to save that amount of money. Ive already found a sink for £130 less. Weather has been fabulous here all day.. It wont last but it was nice while it lasted!
Min
Ha Ha Ha,
Peter had that all thru his Revlamid. Much better now on Thalid. (for now) it wont last never does. We have got over the shock now and just getting on with it as usual.
Time I was in bed or no gardening will be done as I wont be able to get out of bed! Sounds like the kitchen will be to your liking. Im just going over the appliances that I can get elsewhere cheaper so I will not made of money unfortunatly.
I did have a cleaner for a while he was polish called Majic and really a godsend when Peter was 1st diagnosed, I simply could not cope, 3 dogs to walk 3 times a day, going to work,grass cutting in the garden laundry shopping and housework, Peter seemed determined to wear a shirt daily and sometimes two when he was sweating. It was a nightmare and had to get my son to talk to him.
Dont want to go there again!!!!!
Wow David,
Busy busy busy. Have a wonderful time. I learnt how to drive in the dark when a rooky PC in HOIK( thats how we pronounced it)
Morpeth is not too far from us and if on your way back south you go via the Tyne Tunnel call in on us if you like for a coffee. Take it easy and dont get too tired.
Love Min
