Hi Rebecca, hope I can keep carrying on for a long time to come!

I find some of the posts both on here and on the Facebook Support page very sad. MM should not have entered EmmaJ’s life at 38 years age, thats not right. The same with many others who post on both sites, they are going through some tough old times.

I know its very scary but there…[Read more]

Emma, its not fair that someone so young should have to cope with MM. But age is on your side! You’ve read from Rebecca of her experiences.

I am a lot, lot older than you. In fact I had a second SCT at 72! 18 months down the line I am drug and treatment free, we travel, quite a bit, go to concerts, off to see Queen in London in December, and we…[Read more]

Peter, thats a very good question, where do the pp levels have to reach before treatment is triggered.

I had my second SCT in March 2016, pps were undetectable for ages, no drugs no treatment, currently they are at 2.6, consultant didn’t seem that bothered, she says that readings below 5 are unreliable! Come back in 3 months time, with a 6 week…[Read more]

Sarah, maybe this will help.

Why not contact the myeloma nurses at Myeloma UK.

They are very knowledgeable and understanding.

Best of luck

Tony F

Hiya Steve, just read your post, you call yourself leicslad, does that mean you live in Leicestershire. I run the Leicestershire & Rutland  Myeloma Support Group, my email address is:

tony.farquharson@btinternet.com

If I can be of help please email me.

Regards

Tony F

Hi Susie, I had 26 months of no treatment, no drugs after my first SCT. My pp’s never really dropped below 2, when I relapsed they climbed very slowly, got to about 8 before treatment was restarted. Pp’s were reduced to around 2 when I had a second SCT.

Hope the above helps.

Tony F

Evening Teresa, did I understand from your initial post that Daves brother died of myeloma? Interesting, I didnt think that this disease ran in families. Sounds to me that your GP was very alert and you were given an early diagnosis. Daves initial treatment seems to have worked well if you are being prepared for a stem cell harvest. Hope that all…[Read more]

I had 26 months remission from my first SCT so when I relapsed I was offered a second SCT. After treatment with my pp,s down to 2 I had the second SCT. Managed it quite well and returned home after 14 days, took a while to recover but am now a year down the line, my pp,s are undetectable, officially in remission, no drugs, no treatment, no…[Read more]

Jimbow…….you must be very proud of your dad, he is certainly a fighter and he deserves a long remission.

wish him the best of luck, and please keep us up to date.

regards

Tony F

Hope all three of you handle your next round of drugs and that they remain effective. I don’t often comment these days, there are times when I need to escape from Facebook Support and discussion forums and try to break away from the word myeloma. Easier said than done.

Pre myeloma days we lived in Keswick, wonderful times, wonderful area, my…[Read more]

Hi Simon, thanks for your message, great job you have! If ever you get to Leicester look me up.

After my first stem cell transplant I was at a really low point, the local cancer centre offered individual relaxation classes, the woman also practiced reiki, after those sessions I was so relaxed about things, amazing. We have just returned from…[Read more]

Hi Simon, I guess that I am a lot older than you. I was scared s******s when I was told that I had myeloma, I had never heard of it before and immediately went home and googled it, that made it even worse, I thought that I would not last the year. But I did, I had stem cell transplant number 1, had 26 months with no drugs and no treatment except…[Read more]

Evening, I managed 26 months from my first SCT. Like your husband I managed the first quite well, though was in for 21 days. I had the second in March 2016, was in solitary for 14 days then off home. I think I managed the second one better than the first, maybe I was aware of what was happening and able to deal with the treatment better, though it…[Read more]

Evening, Myeloma UK produce a leaflet listing many insurance companies that offer travel insurance, I guess you can access through this site.

regards Tony F

Evening Sonia, no I don’t understand why two consultants should have differing opinions, it does annoy me, particularly when myeloma uk print literature on the subject.

What part of the country do you live in and which hospital does your husband attend? I live in Leicestershire and attend the Leic Royal Infirmary, I find them superb, under…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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