Hi Stanley,

I too have found my hangovers have diminished somewhat.

I was told at a consult with Prof. Jackson when I went to see him in 2012 when all my treatments till then hadn’t worked and auto and allo sct’s had been ruled out to go out and enjoy life as much as I can. We’ve followed his advice . In our position it’s do it now because you…[Read more]

Hi David,

Thanks for your best wishes, just re read my post, i was not very clear, it took 4 years to be diagnosed, which was nearly 3 years ago, I am on my first relapse after various treatmeats, Thalidomide, SCT, Vertbroplasty (for crushed vertabrae, I lost 3 inches in height), But they said I will always have pain, hence the Zomorph.…[Read more]

Hi Maureen and Ian,
I have not been on for a while, glad to hear Ian has had SCT at last.
Your description of him takes me back, he just has to rest and eat when he can, but not panic at weight, I sent most food away first 10 days( approx), it will come back. I had a ‘mysterious infection’ which cleared when they removed my Hickman line.

I was…[Read more]

Hi Anna and David, sorry to but in, I have not been on much recently, I find this site friendly and useful, but my myeloma came out of the cupboard recently, first relapses after SCT, so a bit shocked as greedy me expected longer

I hope you are both doing as well as can be expected.

Just an observation, an awful lot of people end up diagnosed…[Read more]

Hi Janet and all,
I match your description too, I am on Zometta bone strengthner, and zomorph, I am also on cycle 3 of velcade ( my first relapse after SCT). My feet and hands are very dry too. Does anyone have vertical ridges on hand fingernails? Mine started on a couple of nails pre diagnosis.

Best wishes

karen 🐱

Hi all. weekly Dex

Me inspirational now there’s a first 😇

Well cycle 18 had a little sting in it’s tail. Had quite bad leg cramps last night for about an hour. Strange place too on my shin. I get cramps quite regularly at the end of cycles have done since I started Revilimid in 2012 and has continued with Pomalidimide. Guess I’m not drinking…[Read more]

Hi Janet, ( and all),

I had SCT in January 2013, it has definitely affected my memory and concentration, I used to read a lot, now it’s a struggle. I may try that magazine with short stories. I suppose being on zomorph will not help, I have a lot of bone pain, because of late diagnosis, so it’s probably a mix of all of the above.

Good luck and…[Read more]

Hi Joe
I am a bit late saying this, but glad to hear your tests went okay, fingers crossed for you.
I am treated at Leicester Royal also. I have had 3 bone marrow test, I had a local and gas and air, the fist two were not pleasant but bearable. The most recent test was horrendous, worse than giving birth! And when nurse said that she did not get…[Read more]

Ian, I hope that all goes well with your SCT. You ve certainly had a long wait for this moment, let’s hope that it gives you a long remission.
I guess over the years you have read all about SCT, it isn’t a cake walk but you are a tough guy, going through all you have been through over the past few years.
I wish you all the very best.
Regards
Tony F

Hi Dawn,

It can be daunting especially when you’re just setting out on the myeloma journey. Every blood test is approached with trepidation. It does get easier I don’t even ask about my results anymore because I know if I have a problem they will call me as they did my last test with my phosphate being low.

Hopefully CDT will do the trick for…[Read more]

Joe, pleased that you got through your tests okay.
To everyone, I can’t believe the differences in the way that hospitals approach a bone marrow biopsy. I attend the Leicester Royal Infirmary, in doing a BMB it is standard practice to give a local anaesthetic and to give gas and air. It really does help, it seems that I have particularly hard…[Read more]

Hi Helen,

I was just saying to Steph today that I should text you to see if you were going to the info day! Unfortunately I couldn’t get a signal, we’re in the Lake District, and when we got a wifi connection in a handy pub I got an email of your post!

I’ve seemed to of had a cold on and off since before Christmas though things seemed to of…[Read more]

Hi Vicki,

sorry to hear Bendamustine isn’t working for Colin. It’s a horrible feeling when the consultant says any treatment isn’t working. Hopefully in a month or two Colin can go on to Rev and Dex and get some longevity out of it. I got 22 cycles of moderate stability out of Rev before it stopped working for me and if Colin can get something…[Read more]

John, I hope that you reach the right decision for you. By way of spurring you on, I was 68 when I had my SCT.After about 6 weeks I was beginning to lead a normal life, 26 months down the line, and being completely drug free for that time, my pp’s are slowly increasing, currently about 6. I have recently had an MRI and a bone marrow biopsey, to…[Read more]

Hi Richard,

Your list of side effects reminded me of some I’d forgotten. The sweats that’s Dex! Well it is for me. The loss of the ability to concentrate was a major problem for me and I stopped driving because of it. I wasn’t sure if it was caused by the Revilimid or the Cyclophosamide but as I said I didn’t feel safe driving and found reading…[Read more]

Hi John,

I’ve never been in the position to have a SCT so I’m not sure if you’ll find my point of view valid.

I have wondered what I would do if I was offered a SCT as there seems to be a debate going on to whether it’s the gold standard for treating myeloma. It’s especially being discussed in America but the two camps are divided. Some say…[Read more]

Hi Jill,

I’m on the 4mg dose of Pomalidomide and I start my 18th cycle tomorrow. They do seem to be loading your mum with antibiotics I myself take ciprofloxacin as a prophylactic as I have an indwelling catheter and its to guard against uti’s.

I’d give your mums specialist nurse a ring and ask why the antibiotics have been prescribed.

Every…[Read more]

Hi Vanessa.

Unfortunately coughs, cold, and infections are a way of life for us mmers so it’s not unusual. Even when not neutropenia our defences are low. The constant being under the weather will get anybody down and as long as his blood tests come back ok there’s not a lot that can be done.

You can ask for a second opinion and it won’t be held…[Read more]

Hi Richard.

Sorry to hear that you’ve had to restart treatment. Hopefully Revlimid and Dex will do the job for you and get your myeloma back to at least being stable. I was on Revilimid for 22 cycles with Dex at 40mg for the first 4 days per cycle. Unfortunately it did nothing till Cyclophosamide was added to the mix. Side effects for me were the…[Read more]