[tonyfParticipant]

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 are so many treatments now available and more on the way, there will be a cure one day.

EmmaJ, SCT would seem to be the most positive of treatments available at the moment. To answer your questions, no it doesn’t hurt at all, yes there is a smell of sweetcorn around, but I doubt if you will smell it, yes your hair will go, mine grew back very curly! The taste buds take a while to return and you probably will find eating tough going for a while. There will be times when you won’t want anyone around, but it is all doable.

You sound like a strong, positive person, who is thinking this thing through.

Keep staying positive.

Regards

Tony F

[tonyfParticipant]

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 live life to the full.

Sure the SCT can be rough going, at times, its not painful, its very doable.

Go for it, plenty of support here if you need it, wishing you the best.

regards

Tony F

[tonyfParticipant]

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 blood test.

Might just ask the question next time I’m in.

Regards

Tony F

[tonyfParticipant]

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

[tonyfParticipant]

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

[tonyfParticipant]

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

 

[tonyfParticipant]

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 goes well.

I was diagnosed 5 years ago by a very alert GP. My initial treatment worked very well and had a stem cell transplant, I managed 26 months of remission before it reappeared. It was 26 months of no treatment, no drugs etc we lived life to the full. The second round of treatment was deliberately slow and I had a second SCT in March 2016. So far, so good.

We all suffer temperature spikes and infections, my problem seems to be fatigue, I can sleep for England but on the other hand I have the energy to do all sorts of things.

As the carer you need to stay strong, best of luck to Dave.

oh I forgot to mention that I had my second SCT aged 72.

Regards Tony F

 

[tonyfParticipant]

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 maintenance only zometa every three months. Visit the consultant every three months with interim blood test every  6 weeks. I’m aged 72! I don’t regret going for a second SCT.

Good luck with your decisions.

Regards

Tony F

[tonyfParticipant]

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

 

[tonyfParticipant]

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 favourite walk is Buttermere! Helen, if you eat out have you been to the Case Bella in Keswick, good food, good prices, nice people. I envy you that visit.

Stay well.

regards

Tony F

 

[tonyfParticipant]

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 Tobago whilst there my wife had ordered a reiki session for me. The session was great, the woman was a reiki master, during the session she used crystal bowls and a flute and I felt so many tensions disappearing from my body, felt really great after and still do. Ive not really believed in alternative therapies but this has made me think that I will find someone here in Leicestershire.

Best of luck

Tony F

 

[tonyfParticipant]

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 for 3 monthly Zometa infusions, I came out of remission and much to my surprise at 72 years age I had a second stem cell transplant, now a year down the line my paraprotiens are unquantifiable, I am NOT on any drugs and NO treatment, we’ve just come back from Tobago, are away again in a weeks time with the family to Norfolk and are talking about going to visit one of our sons in the Philippines. You’ve every right to be scared but there is life out there, trust in the judgement of your specialists.

The Facebook Support pages are ok, but, I let you draw your own conclusions!

Its all very scary but you can do it. I have and so have others.

Best of luck

Regards

Tony F

 

[tonyfParticipant]

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 did take a while to get up and running due to an infection, caught from a carer in the transplant clinic. Currently my pp’s are undetectable, so I no drugs, no treatment, on a watch and wait. Oh by the way I am 72 years old. Hope all goes well.

Regards

Tony F

[tonyfParticipant]

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

 

[tonyfParticipant]

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 pressure like any other hospital, but they always find time for the patient and always professional.

Just a thought can you print out the myeloma uk leaflet and take it with you at your next consultation?

My SCT were both auto, I had enough stem cells harvested for two transplants, currently my pp’s are not quantifiable, so I am on a watch and wait, no drugs other than zometa every three months, hope it continues.

Hope you can sort this out with your husbands consultant.

Regards

Tony F

[Author]

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