Hi Helen.

As you say I’ve been proper poorly. I’m now recovering. I had pneumonia and sepsis and I think I sailed a bit too close to the wind. As of now I’ve restarted my pomolidimide and Dex. Though the Dex is only at half strength whilst I try and get walking again.  I feel lucky and okay. I’ve got shakey hands and hardly any strength but most…[Read more]

Hi Mike, I am 39 days post stem cell transplant.  I am doing well I think from the feedback at transplant clinic but I guess the BMB after 100 days will tell more.

I just wanted to say sorry to hear that your protien rising but although SCT is challenging,  particularly on the GI tract,  it is very doable. I found the time in isolation was ok be…[Read more]

Hi Jane

You must have been so relieved to have achieved two good lengthy periods of remission following your two SCTs. Hopefully your light chains might only slowly increase after your last treatment, which would give you more years of remission. Had you previously used Velcade as part of your SCT treatment? What happened to your light chain…[Read more]

Hi Gill

So lovely to hear from you. It is hard to believe it’s been 3 years since Stephen died. I always read your posts and especially about France. One thing has stayed in my memory – the thread was travel insurance – and part of your post was ……. And Stephen said “I’m not going to wake up in the morning with a severe case of Myeloma ”

I…[Read more]

Thanks for this post Graeme, I am also experiencing a very noisy GI tract post SCT (I suffered severe mucositis) and Jill’s reply is really helpful.

Hope you are OK now.

Best wishes

Karen

Hi, I was on the VTD (Velcade, Thalidomide and Dex) and I think it was by the third cycle I was experiencing symptoms of peripheral neuropathy, particularly in my legs and feet. The Consultant reduced the dose of Thalidomide by 50% for the last three cycles so the symptoms did not get any worse.

I completed the six cycles in June and although I…[Read more]

Hi Roseanna

I think it depends on the hospital. When my hubby was in for SCt, for about 1 week I was the only one allowed to visit him. Before I went into his room I had to go into an anti room and put on a gown and gloves. Every time I left his room I had to go through the same thing. He didn’t and at times couldn’t eat, so,I brought in his…[Read more]

Hi Maureen

It’s such a good feeling when you are able to go away and relax on holiday following successful treatment. I’m glad you both enjoyed yourselves in Ibiza, especially with Ian managing to spend some time swimming. Since my vertebrae collapsed, I find it impossible to sleep on my front or swim breast stroke/front crawl. Like Ian, I…[Read more]

Hi All,

I was discharged on Friday (three days short of a month in hospital) because just as they were saying I could go home I got a chest infection which was treated with IV antibiotics and added a week to my stay.

It was difficult at times, particularly because I got severe mucositis despite sucking ice pops and ice lollies before, during and…[Read more]

Hi Susie,

I have just come out of hospital after a stem cell transplant. was a tough month but doable and now I have a couple of months recovery to get through. can’t believe how tired I am.

I am sorry to hear that your PP’s are slowly rising after 6 months remission. I agree with the previous poster, rant and rave as much as you need to and I…[Read more]

Hi,

It is a difficult decision of when to restart treatment, because you want to maintain your present quality of life, but equally you don’t want the myeloma to damage your bones or kidneys. Presumably your consultant wants to take a bone marrow test and scans to see what is the level of activity in your bone marrow and to detect any bone…[Read more]

Hello Helen

I really appreciate your heartfelt good wishes, especially as you fully understand the variety of emotions and side effects which you can experience when approaching and going through relapse treatments. It’s good to read your news that pomalidomide is working for you. Long may this continue.

Approaching a new drug regime is…[Read more]

Hi Helen

Unfortunately last week’s light chain results increased by a significant amount and I was called back into clinic. I start treatment as soon as the hospital can organise the start of my twice weekly velcade injections. Came home this evening from clinic with a big bag of drugs, which certainly brings back not so fond memories of the…[Read more]

Hi Mervyn

If it wasn’t for the regular monitoring of my blood and urine at clinic appointments, then I wouldn’t know that I was relapsing. I feel absolutely fine. I’ve had bone pain and fatigue ever since my SCT, but the bone pain is controlled with pain patches and I’ve learnt to live with the fatigue by resting when necessary.

I have light…[Read more]

Hi Ian,
I was 53 when I had my SCT after four successful cycles of CDT. My consultant advised that I would be able to return to work after three months. I know some myeloma patients recover very quickly after their SCT, but I suffered with nausea, severe fatigue and bone pain. For the first six months, I had no energy and found even pottering…[Read more]

Hi Maureen

Terrific results for Ian. You both must both be so happy about the results. Enjoy your holiday in Ibiza.

All the best
Jan

Hi Andy,

everything OK? Not heard anymore for 6 days.

Sorry Jeff, if your talking about the MP for Rutland and Melton, don’t hold your breath and I speak from personal experience. He will not do anything to upset his mates, I believe he also has one of the worst records for attending debates in the House. Remember the protests against David Wilson Homes building on Dalby Airfield? He couldn’t even be…[Read more]

Hi C

Thank you! If my previous post help you in any way,I am glad,it’s an awful situation,medically and with the present politics concerning Cancer drugs,they have no understanding of the mental anxiety that patients and family suffer.

We always tried to lock the myeloma away,in every sense of the word,Slims attitude was why worry about tomorrow…[Read more]