Evening Beverly, I had exactly the same reaction as you have had, it turned out to be allupurinol that was causing my problems. So I was taken off it.
Regards
Tony F
Hi, although it was a couple of years ago when I was on the myeloma XI trials, I felt exactly the same as you, but it did vary through the cycle, I put the blame on the treatment not the myeloma.i know it’s easier said than done but I tried to rise above it! Going walking helped!
If it’s any consolation it won’t last, the treatment bought my pp’s down from 44 to 17, had a SCT two years ago, and have been drug free since then, feel good, though according to my wife I’m still a grumpy whotsit!!!!!!!!!
Haha
Regards
Tony F
Good evening, what a way to spend Valentines! I know it’s easy to say, but please don’t panic, mm will not overtake you, why not wait and see what the consultant has to say before you reach any decisions. Is your husband still mobile and can he fend for himself, ie cook, go to the loo, shopping, go out for walks etc etc. if yes then let things stay as they are.
This is a great site for advice and support, remember we’ve been there and are in the process of dealing with myeloma.
Hope all goes well.
Regards
Tony F
Hey,Shabbyneil, noticed that you live in Ashby De La Zouch. We are in the process of reforming a Myeloma Support Group in Leicester and are looking to recruit members. Would be good if you could join in.
For more info I can be contacted on: tony.farquharson@btinternet.com
No pressure but look forward to hearing from you.
Regards
Tony F
I believe that you have to remain positive, if not for yourself, then for those around you. My paraprotiens were at 44 prior to SCT, three months after they were below 2, perhaps not what I wanted. I was/am on the myeloma XI trial, I opted for no maintenance drugs and two years later I am still on NO treatment, I visit the clinic every three months, at the last visit my pps had gone up to 4.9, the specialist was not concerned, so I guess all other blood levels etc were okay. There is treatment/drugs that will be available as and when the specialist sees fit, till then I get on with life. We still travel, been to Spain, Greece, San Fransisco, Hawaii, many places in the UK since SCT. I have had one nasty infection in two years, obviously we are mindful of infections and I am careful about what I eat, don’t kiss people with coughs and colds. I walk the dog for an hour or two across country every day and generally enjoy life.
So it’s not the beginning of the end!
Please stay positive.
Tony F
Hi Amanda, I am sure you will get quite a few responses to your request. Let me tell you how my SCT went. Prior to harvesting I was given four injections, one a day, to boost the blood cells, the evening before harvest I was given a final injection, very expensive, evidently. Was hooked up to the unit, and off we go, I spent two days having the cells collected, four hours a day. The worst part was having to lay there doing nothing but watching daytime TV. Absolutely NO pain. I was admitted one week later for the transplant. My son in law shaved my head prior to admission, I was warned that my hair would fall out. The specialist gave me the worst possible scenario as to what could happen to my body during the SCT, everything from stomach upsets, weight loss,ulcers in the mouth etc all very worrying, but you know all I had was severe stomach upsets which lasted for two days. In Leicester there is an isolation ward with 5/6 individual units, all ensuite etc etc. Day 1, a Hickman Line was put into my chest, again painless. Day 2, was given a very large dose of chemo then on day 4 the stem cells were transplanted. Everything is done through the Hickman line, from taking blood samples, giving fluids, stem cells, chemo etc. I was off food for a few days, then could only eat very small portions, drank just about everything going, but really enjoyed full fat milk, cold from the fridge. I guess the worst part was the isolation, even the nurses left you alone, so get a Kindle, or lots of books there was a TV and radio in the room. I was in for three weeks, early on spent a lot of time sleeping, was quite weak, but improved rapidly.
I went home after three weeks, still feeling weak, disjointed and shaky, was advised to stay in the house, in semi isolation for a few weeks. I did go out for short walks and did what I could around the house, I slowly found my strength and within about six weeks I started taking the dog out on country walks and went from there!
I can understand you feeling apprehensive, try not to be concerned, it is a scary thought but the whole process is very doable.
I think Macmillan have booklets on SCT and I am sure that myeloma UK have similar.
Hope this helps.
Best of luck
Tony F.
Hi, your post is interesting. I am the opposite to your husband. I was on myeloma XI trial, had a SCT two years ago, after long discussions with consultant and trials drug nurse I opted for no maintenance. Have had one infection over those two years, pps never went much below 2.0 and are slowly rising currently at 4.9. No talk of any further treatment yet. Do a two hour cross country walk every day with my dog, go up to the Lakes quite often, walking. Can still fall asleep at the drop of a hat. Took 3 weeks to bring a winter cold under control. I am 70.
Doesn’t help you with your dilemma, just the opposite.
All the best
Tony F
Evening, had my SCT exactly 2 years ago. Was/am on the myeloma XI trial. See my consultant every 3 months, not on any drugs have penidronate infusion every three months, it is being changed to zometa this month. My Pps never went much below 2, last reading three months ago was 4.9. Other readings must be okay because consultant has not recommended any treatment.
I feel fine, take dog out for two hour country walk daily, do as much as possible, been on holidays in UK and abroad. Can fall asleep at the drop of a hat. By the way I am 70 years old.
Regards
Tony F
Well, perhaps not a good idea to go swimming in a pool. We were on holiday, I went swimming, had a sauna etc and lo and behold two or three days later, wallop. Probably the worst infection I have ever had, laid me low for ten days! Couldn’t put the infection down to anything but the swimming.
But hey we are all different.
Regards
Tony F
I really do not think that this discussion forum is the right place to bring up such a subject.
Evening Chrissie, so your pp’s are at 23 and you are not on any treatment. Can I ask, have you been on treatment, if so have you had a SCT?
I was diagnosed 3 years ago, put on myeloma XI trial, had a SCT, pps were down to 2. That was almost 2 years ago. No treatment since the SCT. Pps now at 4.9. Specialist doesn’t appear concerned, still no treatment, just watch and wait, come back in 3 months!
Linda seems to think that with her pps at 8 she may start treatment soon.
Very odd, don’t know what to think!
Same thing happened to me, very annoying.
Hi Dawn, I too attend the Leicester Royal, unlike Jeffrey I am on the myeloma XI drugs trial via the NHS. There is a special clinic for those on drugs trials, financed I think by a charity called Hope for Cancer ( Leicester based I believe ) I see the same consultants as Jeffrey, and like him I also have my favourites! Don’t think I ever seen a registrar. He is right about the consultants meeting and discussing patients whether or not they are on trials everyone is treated in the same way.
Regards
Tony F
Hiya Bernard, yep, been there, done that.
I would suggest that you read as much as you can on the subject, preferably from myeloma UK.
As for me, I was very nervous after the transplant specialist gave me the sequence of events and all the things that ‘could’ happen to the body after the transplant.
The harvest was easy, it took two sessions to collect enough cells, very boring just laying there watching daytime TV.
I had a Hickman Line into my chest which was a bit unpleasant.
The actual big dose of chemo and the transplant were painless, all done through the Hickman line.
I was in isolation for three weeks, and was in semi isolation at home for about a month. Then slowly got back to a normal routine.
All of the things that could have happened to me didn’t happen, maybe I was lucky!
Now twenty months later I am not on any drugs, I have a clinic visit every three months and have a penidronate infusion at three monthly intervals. We still travel in UK and abroad.
I travel with my trusty thermometer and antibiotics, just in case!
You could say I had an easy time, some may tell you of their difficulties, but all I can say is that it is all very terrifying but all very doable.
I wish you the very best on your journey, let the experts guide you along it, you’ll look back and wonder what all the concern was all about!
Go for it.
Regards
Tony F
Robert the article is in the autumn issue of myeloma maters.
Regards
Tony F
