Hi Sarah,
Good to hear from you and I hope Gordon is home with you now, and hopefully to a warm house! We live in Tunbridge Wells and the support group is centred here although I think there is also one based in Brighton although that might be too far over for you. You can find a list of all the support groups, by area on the front page of the Myeloma UK website, its under the Services menu, find a support group. All the contact details are there. If I can help please email me, mari_mason@hotmail.com, or maybe we can chat on the phone if you like. However you may want to chat to someone more experienced. I have always found that Ellen the myeloma uk nurse on the Infoline is wonderful and I am sure she can help you make some sense of what is going on. Heavens knows this myeloma malarkey sure foxes me at the best of times!
Dear Gill, I do hope you enjoyed the champagne and things are beginning to be a touch more normal after your shock, this disease is such a roller coaster, I think you guys who have been living with it for a while have nerves of steel, the way you pick yourselves up and carry on,
Love and Hugs,
Mari xx
Hello David,
I have just caught up on your musings and I just wanted to wish you a speedy recovery. I am sorry to hear you are feeling pretty rough and the moment with sore throat and poor appetite but I feel sure that once you turn the corner you will quickly bounce back.
Steve went back to work yesterday, two days a week only, and it is still not quite three months since his SCT.
I hope you will soon feel so much better,
Love Mari xx
So sorry to hear your news Gill, what a knock back. I have just come in from our local Myeloma support group. We were just talking about the whole relapse thing. There are several relapsed people in the group, still living a pretty normal life and coping with whatever the next stage brings. Hang in there I know Dr S will do his best for and there is a;ways new things coming online
Big Hugs,
Mari xx
Sorry after such a lengthy post I forgot you asked about side effects. I think Steve's side effect were made worse by the shock of suddenly going from a fit healthy man to someone who was totally dependant and incapable. He got pretty depressed and anxious, totally out of character, but he had a wonderful counsellor who helped with that. He found the combimantion of dex and thalidomide made him really exhausted as the cycles progressed. He was fine for the first two. Its hard to tell if he had any neuropathy as he had lost so much feeling with the spinal injury, this is slowly returning now. He can drive etc with no problem. All his side effects went away pretty quickly when he came off the chemo. He finished in early June and was very well through the summer. I hope this helps,
Mari xx
Dear Mavis,
Yes Steve had his op on 7th Jan 2010. His consultants decided not give him any radiotherapy as they felt the chemo would deal with any of the tumour that was still left behind. He came out of hospital end of Jan and started CDT in mid February. At the time we were told this was the 'gold standard' in treatment but things are moving so fast in myeloma research that I believe new treatments are now being used. You need to talk to your consultant about all the possibilities but I understand a recent trial involves cyclophosphamide, revelimid and dexamethasome, (CDR) instead of the same cocktail but with thalidomid that Steve took. He had five cycles and his paraproteins came down to 'undetectable', its hard to be accurate apparently at low levels. However his paraproteins were never extremely high, 33 at its worse, but he did have the spinal tumour which of course was very painful and debilitating. On his paraproteins alone his consultants did not think he was quite bad enough to treat at that stage. This is such a difficult disease to get a handle on, everyone is different but I am begining to think there are some pattern in people with similar types of myeloma, Steve has IgA, lambda. He has since had a Stem Cell transplant in mid September and is making a phenomenal recovery. He has not used sticks for some considerable time and was even able to walk in the snow yesterday. He planned to return to work on last Thursday but was prevented by the lack of trains due to the weather! I know things must seem really tough for you right now but there is hope. When Steve came out of hospital he could not do anything for himself, I had to dress him, get him into bed etc. but he has come on so much. He is determined, downright stubborn some might say and he has worked hard but it has paid off. Hang in there, i hope you will have a similar outcome. But please be gentle with yourself, physio is tough and I sometimes think he over did it. I thought he made as much progress when he was in hopital having his SCT and enduring enforced rest! As we approach a year since this all started we are facing a much brighter future. Take care of yourself,
Much love, Mari xx
Hello Susan,
My husband had a simliar experience to your Dad's. His myeloma was diagnosed last January when he lost the use of his legs and underwent emergency spinal surgery. You mention taking your Dad to your physio. He should get physiotherapy on the NHS from a specialist neuro physio. You may have to push for this, we certainly had to, but get on to his GP and make sure he gets the right treatment. My husband Steve had several weeks of physio, including hydrotherapy which helped him regain his ability to walk and strengthen his legs and muscles. Steve was also able to take advantage of an arrangement between our local GP's and the Gym, he was able to use the gym and pool and the services of a personal trainer for a reduced cost. You are right, your dad's wobbliness is probably neurological and it will take time for him to recover. We were told between 12 to 18 months. It is now nearly 11 months since Steve's op and he has been through a great deal of treatment for myeloma and he is still improving. He no longer needs a stick, ( he used to use two!) and his stamina is improving all the time. It is a long job but it sounds as if your dad has the determination to keep going. It seems to me that a combination of hard work, determination and patience is needed. The nerve damage just takes time to recover although you can do a lot to help the recovery on its way.
I hope your dad continues to make a good recovery and his treatment for the myeloma goes well,
Best wishes,
Mari xx
Ah Blooming, now i like that, I just might have to adopt it. My grandmother used to use it, along with 'Dash it' with considerable irritation when things did not go her way. This is the way forward for me I think!
Hi Debs,
Not heard of myeloma XI trial, what does it involve? I hope it goes well for you,
Love and best wishes,
Mari xx
Good luck David
I hope all goes well on Monday and in the weeks to come and you are home in time for a relaxed Christmas,
All the best,
Mari x
Message received and understood, but i think i learned my lesson last time!
Hi guys,
I am home alone tonight because Steve is out at his first band practice since his SCT. The first sign of him feeling better was the sound of the guitar in the house again. I am chufffed that he is back with the boys again, as are they.
I am sure he would be interested in doing something musical with everyone if there was a chance,
I hope your gig went well last night Dai,
Mari
Dear Fran,
Good luck for your SCT next week. You sound so positive I am sure you will come out well on the other side. I have not experienced one myself but only been with my husband as he went through it. I think everyone will agree that it is a tough thing to go through but very worthwhile. Steve is now 8 weeks post SCT and his blood levels are all in the normal ranges and his energy is increasing everyday. He is better now than he has been for over a year. He too was diagnosed in January 2010 and started chemo in February. We are putting 2010 behind us and looking forward to a new start in 2011. I am sure you have a great deal to look forward to in the next year. I wish you and your family well as you start out on your SCT and hope you will soon be feeling much better and look forward to 2011 as well,
Love Mari xx
Good luck Debs, I am glad you know where you are now and can go forward with the CTD positively.The one thing I can say from my experience of seeing Steve on CTD is that the time goes by very quickly and when you come off it the side effects disappear very quickly.
Thinking of you and wishing you well,
love Mari xx
Dear Stuart,
Most of the people who post on here are living with myeloma themselves but there are are also a few of us here who are husbands, wives, partners, sons and daughters. Maybe there could be a topic for them, i hesitate to use the term carer, i have used it in the past but I am no longer happy that it it is appropriate. What do others think?
Mari
Dear Sarah,
Literally just got back from KCH. Today it is 7 weeks since Steve had his SCT and four week since he was discharged. We saw Steve Schey today, not sure if he is your consultant but I always find him very positive. He was telling us that some people in Little Rock have had as many as four SCT's! He said that it shows people can take it. I know that knowing what is ahead of you must make you feel nervous but you have a lot to look forward to, I am sure Gordon will be feeling a lot better by Christmas. The staff on Davidson are lovely and I know Gordon will be very well looked after. You must look after yourself too. Maybe a little retail therapy before Christmas will be just the ticket.
As an aside Steve's bloods are all in the normal ranges now, except for haemoglobin, and that jumped from 8.8 to 10.3 in a week. I am amazed at how quickly he is recovering. I am sure you are remembering the nasty side of SCT but I am sure you have not forgotten how soon Gordon got better last time too.
Take care and keep in touch,
Love Mari xx
