Hiya Sonia, I had my second SCT in March this year. I am 72 years age. I had my first SCT 4 years ago, having had 6 months of treatment on the myeloma XI trial. After each SCT my consultant gave me a pre printed form listing all of the inoculations that I was to have. I have just had the second round, that is 8 months next round due at 12 months, also had a flu jab, but NOT the shingles jab.
Hope your husband is doing okay, not too many difficulties getting back to a normal way of life.
Best of luck
Tony F
Hiya Taff, sorry to have to welcome you to this “happy band” I think that the bone marrow biopsy is the last test needed to confirm yes or no to myeloma. I attend the Leicester Royal Infirmary, when having a biopsy the patient is given gas and air, so you are as high as a kite and not aware of anything going on, you can but ask!
I like your attitude, like you I take it all calmly, smile a lot, put myself in the hands of the experts, ask lots of questions. I was told by the consultant at the hospital, immediately referred to the specialist nurse, was put onto the myeloma X1 trial ( finished now I think ) had a stem cell transplant, got 26 months remission, a year of a much less aggressive drug treatment followed by a second stem cell transplant in March this year. Not on any treatment now, was told to go out and enjoy life and see you in 3 months time. By the way I was diagnosed age 68, had my second SCT at almost 72.
Hope all goes well.
Tony F
Hi Ren, I was in isolation for two weeks following the SCT, was released home, felt really weak and wobbly, had to use a stool in the shower and took ages to do anything, putting socks on was difficult, i found the stairs a bit challenging! It took a few weeks before strength improved, I guess the drugs were clearing my system. I had clinic appointments every 2 weeks where they checked bloods etc it was at one clinic where I caught a chest infection which laid me low for ages. That’s why I said in my last post you have to be careful about infections, so advice is to stay away from gatherings, supermarkets, etc etc.
So the infection slowed me right down but within weeks I was back walking the dog, managing the stairs and doing all the normal day to day things. I do get fatigued for no reason, but I understand this is normal, it is difficult but when fatigue shows I slow down, rest up, it’s the only thing to do.
At my hospital, the Leicester Royal, at stem cell stage I was under the care of the transplant unit after 100 days regardless of my condition I was handed back to the Haemotology dept. They organise all of the tests to see how the transplant went. So my pp’s are at 1.5, no cancer in the bone marrow, so am in remission. My next clinic appointment is late November, as I said before, no drugs, no treatment.
Since July (that’s about 100 days post transplant) we have been to Norfolk, the south coast, the Lake District, London, saw Carol King in concert, Billy Joel at Wembley. I walk the dog locally in the country every day, even do a bit of cooking. A long haul holiday booked for January. Oh and I run the local myeloma support group. My specialist told me to live life to the full so that’s what we are doing! Thanks to the SCT.
Stay positive for your mums sake, both your parents will need support, if your mum is healthy and strong she will manage the SCT.
Ask away if you have any questions.
regards
Tony F
Evening Ren, I am 72 and had my second stem cell transplant last March. I had 26 months remission after the first transplant, during that time I took no drugs, had no treatment other than zometa infusions every three months, we lived life to the full, travelled a lot and enjoyed life, we fully intend to do the same again. The proceedure is hard going but is doable, the worst part is being isolated for a few weeks, on returning home it is important to be aware of infections, it meant staying away from family gatherings, limit visitors etc I felt quite weak for a while but was determined to get my life back.
A stem cell transplant was the recommended route given by the specialist, it proved to be the way to go as I was drug and treatment free for 26 months, obviously after the second SCT I am hoping for a longer remission, but if it is 26 months again I know that drug treatment is/will be available.
Hope you all make the right decision, suitable for your mum. If you have any questions just ask.
Best of luck for the future
Regards Tony F.
Hi Andy, I didn’t know you got vitamin D in beer, perhaps Euro beer is different from bitter!
Enjoy it mate, I’m not envious at all!
regards
Tony F
HI, as Jeff says contact Macmillan they will help you to complete the necessary paperwork. In my case Leicester CC received the completed form, phoned me and we did the payments over the phone. Cost was £10 for 3 years
Regards
Tony F
Hi jaylo, I reread your first post and realised you are new to myeloma. Sorry to have to welcome you here, it’s a place that we don’t want to be! You must have noticed that there is a wealth of experience here and everyone is willing to help. You may find that there is also a myeloma support group in your area, worth giving Myeloma UK a call. Hope you do get to see a haematologist, with the greatest of respect to your GP it is a known fact that most gp’s only ever come across one case of myeloma in their career, so would not necessarily know the full facts re treatments etc. I have only seen my GP once/ twice in the past 3 years. All of my appointments, treatments etc etc are with the hospital, only time I visit my surgery is for blood tests, easier than getting to the hospital.
Wish you the best of luck with all that you do.
Regards
TonyF
Hi jaylo, I think that if I was in your shoes I would ask your GP to refer you to the haematology department, I would much prefer to be under the care of a consultant than a GP. Nothing against GP’s mine is a treasure but if anything goes wrong you have immediate access to the treatments available, plus, the consultants and the specialist nurses know you.
Regards
5ony F
Hi cuilmoss, like Annlynn our insurance is via a bank account with the coop, but my guess is that they would not insure you.
Other option would be to check the Myeloma UK info sheet on travel insurance (its on the Myeloma web site) and contact some of the companies listed there. I have heard good reports of a company called nowicantravel.
Best of luck
Tony F
Hiya shellbee, I’m no expert on any of the problems that you mentioned, but my diagnosis was determined from a simple blood test that measured the amount of paraprotien in the blood. Why not tell the GP of your worries re myeloma, ask if it is possible that you could have myeloma and ask for one of those blood tests to be done.
Best of luck, would like to know how you get on. Diagnosis of myeloma is a real talking point by all concerned with myeloma.
Another option would be to phone Myeloma UK and talk to one of the resident nurses.
Again, best of luck.
regards
Tony F
Hi Lorraine, sorry that you have had to join us. There is a wealth of knowledge on this forum. Im now 71, was diagnosed 4 years ago, was on the Myeloma X1 trial, had a stem cell transplant, was off all drugs for just over 2 years when I relapsed. the first treatment I had was velcade, thalid, and dex. The thalidomide really laid me very low and was changed for cyclophosphamide, all the doses were very low and only once a week, it worked because my paraprotien came down and I am now ready for a second stem cell transplant.
Sorry have no idea what those readings of yours mean.
Im sure that your consultant will come up with future treatment, there seems to be so much available.
You could always talk it through with the Myeloma UK nurse over the phone, they are very good and understanding.
Best of luck.
Tony F
Oh yes, I stopped smoking 35 years ago with the aid of hypnosis, I should go for it again.
In the meantime another pre velcade blood test beckons me for tomorrow, ugh!
Tony F
Hiya Geebee, welcome to the club that no one truthfully wants to join!
I was just reading through the posts and noticed you had posted.
I am not smouldering but am going through the whole process, on my last round of drug treatment prior to a second stem cell transplant.
As you probably know they are a great bunch on here, also many of the guys and girls post on the Facebook Myeloma Support Group page, worth a look.
Best of luck on your journey, stay positive.
May you smoulder for many many years.
Tony F
Hi Sue, that it.
You know if i was in your position I would still go for the myeloma X1 trial regardless of which combination you get.
My pp reading at the start of my myeloma X1 trial was 44 by the end of the trial it was at 7, so that gave the SCT team a real good base at which to start.
If you can grin and bear the needles it will be worth it.
Someone suggested that I had hypnosis to help overcome my needle fears!
best of luck
Tony F
Hiya suenev.
I am terrified of needles!!!!!
I was diagnosed 4 years ago with mm, I was randomised and put onto the Myeloma X1 trial. It is an all tablet drug trial, I had a monthly blood test to monitor the pp’s etc. Occasionally when attending clinic an additional blood sample was requested for the trials people to monitor progress. I don’t think that there were any more or any less needles on the trial than if I had been on any other treatments.
I took the myeloma X1 drugs for 6 months, far too long a time to have a line fitted, there would be real concern over infections, also it wouldn’t be that convenient to you for that length of time.
After the drugs I had a stem cell transplant, opted for no maintenance drugs after SCT, remained on the trial, had 26 months drug free remission.
Because you are on a drugs trial I don’t think that as a patient you are treated any differently, but at the Leicester Royal where I attend there is a special unit funded by one of the cancer charities that is specifically for patients on drugs trials, its a bit more comfortable than the ‘normal’ clinic and less crowded, but staffed by the same nurses etc and you would see the same consultants as the usual clinic.
I did have a couple of infections during the trial period, which hospitalised me, but that could have happened regardless.
Hope this helps you.
regards
Tony F
