Hi, I think it’s normal to be apprehensive about your sct. I found myself quite emotional the week prior to my sct in 2010, mainly due to my concerns as to whether I would be able to cope with the whole process, especially the isolation and the side effects of the treatment. I found the staff and care on the Heartland’s sct ward were excellent.…[Read more]

My husband diaganosed with Smouldering Myeloma in 2006. Had SCT IN March 2013. We have BUPA and when diaganosed he spoke to his consultant about going private. She was not in favour of it and he went NHS. They have been brilliant. When he needs scans etc he gets them quite quickly. Couldn’t fault NHS

Jean

I think that cuilmoss is talking about health insurance rather than travel insurance.

The premiums are bound to be high but before you make any decisions I suspect that it’ll be an either/or situation as far as receiving NHS or Private treatment is concerned. I don’t think you can mix the two.

Hi, Just thought I would wish you all the best for your transplant at the QE Birmingham next week. I hope all goes well and the treatment gives you a good period of remission. I had my first sct at Heartlands hospital in 2010 aged 53 years, which gave me a good five years of remission. I changed to the QE hospital in 2012 and started relapse…[Read more]

Hi

As you probably have realised from your research, Myeloma can be very difficult to diagnose by a GP and consultants because we all can present with different symptoms, which can change over a period of time. The majority of myeloma patients show paraprotein levels in their blood, but a specialist blood test is needed to measure the…[Read more]

Hi there,

Sorry to hear about your Liver problem and I had something very similar when I first started with Chemo. I had PAD which caused a very high increase in Liver enzymes, so much so the Medics stopped the Chemo for a couple of months hoping the enzymes would drop. They did eventually but it was a tough call whether to continue Chemo or wait…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hi Buzz

When I was first diagnosed with myeloma on my 53rd birthday, I was completely overwhelmed by having to go through chemotherapy followed by a sct that I didn’t ask many questions about bone marrow biopsy results, neutrophils or light chain readings prior to sct. My consultant at the time didn’t answer specific questions about results, so I…[Read more]

Morning, before commiting to any new treatment I think you need to do your research as to the risks and side effects. Read trial reports, research documents, anything written by professional bodies. There’s plenty available on the internet, some are quite old though. One of the reasons I rejected an allo transplant was because the risks of…[Read more]

Hi there,

Like you I was in my 40’s (just a few month’s before my 50th) when I had my diagnosis and later had the auto SCT which also turned out to bit of a bit of failure. My IgG dropped from 36 to 24 only but stabilized enough for it to be left alone. It wasn’t even classed as remission by the medics. Unfortunately after 14 months it started to…[Read more]

Hi

It’s so emotional and worrying for you when you see your light chains rising so soon after a sct. However it’s early days and your levels might fall at your next test or further increases might be very small. After my sct in 2010, my light chains were 30, they slowly climbed up and down to 1900 after a long period of five years. I only…[Read more]

Hi Maureen

So sorry to hear you have both suffered with trying to shake off a cold virus, which unfortunately is so common at this time of year. At least Ian has over a month to fully recover before your next trip abroad.

I completed four, three week cycles of Velcade, Dex and cyclophospamide before Christmas, which reduced my light chains…[Read more]

Hi Mike, the main problem I had after the administration of high dose Melphalan was low blood pressure. I hadn’t realised there was a risk of ongoing cardiac problems and don’t recall it being discussed. Mind you there was so much to take in at the time it is quite possible/probable it was as I have been very well looked after throughout this…[Read more]

<p style=”text-align: center;”>Hi Mike, the main problem I had after the administration of high dose Melphalan was low blood pressure. I hadn’t realised there was a risk of ongoing cardiac problems and don’t recall it being discussed. Mind you there was so much to take in at the time it is quite possible/probable it was as I have been very well…[Read more]

Hi Mike, so glad you are starting to feel better but sorry to read you have only achieved a partial response. I hope you will find that involvement in the trial does increase chance of keeping the MM under control.
Very best wishes

Karen

Hi Vicki what a lovely surprise. I’m rarely on forum as I’m on the Facebook forum. Pop in occasionally. How are you doing. Really lovely to hear from you. The say Frank is still in remission but he has now developed diverticulitis which is painful. Seeing consultant 25 February and after all this time I’ve a list of questions Vicki I hope you are…[Read more]

Hi Vicki what a lovely surprise. I’m rarely on forum as I’m on the Facebook forum. Pop in occasionally. How are you doing. Really lovely to hear from you. The say Frank is still in remission but he has now developed diverticulitis which is painful. Seeing consultant 25 February and after all this time I’ve a list of questions. Months before…[Read more]

Hi Vicki what a lovely surprise. I’m rarely on forum as I’m on the Facebook forum. Pop in occasionally. How are you doing. Really lovely to hear from you. The say Frank is still in remission but he has now developed diverticulitis which is painful. Seeing consultant 25 February and after all this time I’ve a list of questions. Months before…[Read more]