I was diagnosed with MM in October 2011 and recruited onto the Myeloma XI trial. After 4 cycles of Revlimid, Cyclophosphamide and Dexamethasone my response deteriorated so I received 2 cycles of Velcade, Cyclophosphamide and Dexamethasone. I then received high dose therapy and stem cell transplant…[Read more]

Very good to hear from you. I trust that like me the Revlimid is not giving you any great problems. I get slight constipation and runny tummy but both are minor and easily managed.

I trust your SCT was not too arduous. My Paraprotein was slow to go down to the plateau of 5 so maybe you will see further change. Even so, if you’re f…[Read more]

I’m sorry to hear about your husband who, reading your other posts, has had a rough time. I believe you are in the right place on Myeloma UK who publish some excellent guidance and provide this forum where you can express yourself and perhaps get some reassurance.

Looking at your questions I think you remain uncertain about the benefit o…[Read more]

It’s disappointing to hear of your experiences. The comment from TonyF will no doubt give you some hope.

I wonder whether your experience has been with just one specific consultant and if so, maybe a change would be appropriate.

Like many others on this forum I’ve been able to get blood results when I’ve asked. Whilst I was recei…[Read more]

It’s refreshing to hear your views on travel insurance. In another thread I had published the fact that my wife and I currently accept insurance without myeloma being covered. Despite indicating that “This suits us but might not be appropriate for others”, it resulted in a stern comment from one contributor that such a strategy was wrong…[Read more]

Last year I attended the Infoday at Cardiff. I was most surprised to hear about the varying standards that patients seem to encounter.

As I’ve mentioned elsewhere on the forum, I rate Bristol very highly. Yes things do occasionally go awry such as my notes not arriving in time for my Zometa treatment but the staff are apologetic and s…[Read more]

Having taken some time out from the forum, I’m reminded that I’m not alone with this disease. Holidays are certainly possible although insurance can be an issue. Companies that claim to be “cancer friendly” don’t seem to be when you contact them. When I was first diagnosed, the consultant agreed that I…[Read more]

Firstly excellent news on your other post – keep well.

I’m surprised about your DVT. Revlimid is known to carry a risk of thrombosis and so aspirin or Clexane is commonly prescribed. I’ve been on Revlimid both during initial treatment and now on maintenance and, since I have a “sensitive” stomach, I opted for Clexane. I was originally…[Read more]

I was diagnosed with MM in October 2011 with a PP count of 56 and joined the Myeloma XI trial receiving RCD then VCD before stem cell transplant in July 2012. Before transplant my PP had only got as low as 18. My initial response to treatment seemed rather poor with PP…[Read more]

Also note that the link provided for renewal of Myeloma Matters in the routine letter no longer works. Presume you don’t want it…[Read more]

Great to read that Colin is now on the ward. No doubt today he will have his stem cells infused. The time will soon pass and he will be home again so keep cheerful. We've just come back from 2 weeks in Cyprus which just goes to prove that there is life after HDT&SCT !

Please give my best wishes to Colin and keep well…[Read more]

Colin will indeed be exhausted from his efforts and I add my hope that he…[Read more]

Like your husband, I'm also on the Myeloma XI trial. I've just completed High Dose Therapy and Stem Cell Transplant and was discharged on 18th July. I must now wait until day 100 to see how well I've responded to treatment and whether I'm to be randomised for maintenance therapy.

As Eve has said, each patient's response to…[Read more]

Like you I'm on the Myeloma XI trial and was discharged from hospital on 18th July following High Dose Therapy and Stem Cell Transplant.

It would seem that you are being admitted for Cyclopriming. This is a fairly large dose of Cyclophosphamide which will give your stem cells a kick start. It is common for this to be administered…[Read more]

Neutrophyls 0 for 11th to 15th. 0.03 on 16th, 0.38 on 17th, and 2.22 on 18th.

I guess you win your bet. I win being home!

Best wishes and keep well

Stephen

During my isolation I was provided prints of my blood tests on a daily basis. It was fascinating to watch them deteriorate due to the melphalan but even more amazing…[Read more]

I encourage anyone embarking on such treatment to similarly use the forum.

Thanks everyone and keep well

Stephen

My connection from the Bristol Haematology Centre to the internet is somewhat flaky so I'm just hoping this will work.
Day 1 was Monday 2nd July. I had my PICC installed and X-ray'd – a process which took about an hour. Not painful though a little tender when the local wore off. Then…[Read more]

Keep well

Stephen

Many thanks for your post. One of the benefits of the forum is the realisation that we are not alone with this disease. I've sent you a personal message with my email address. You are most welcome to contact me direct if you wish. I note Vicki's post above and wonder whether you might consider posting details of your experiences.

I…[Read more]

Reading both this post and the discussion you?ve also started, you are going through something of a roller coaster and clearly feeling anxious. I won?t repeat the very good advice you?ve received from your discussion. The key, certainly for me, is the gathering and interpretation of information. I quickly found that I…[Read more]

Many thanks for your post. I was sorry to learn that you had something of a struggle to harvest your stem cells.

I was phoned earlier today and have been scheduled for admission for HDT&SCT starting Monday 2nd July. I can?t beat your world record ? it seems that I have only 13 bags which will be infused on two consecutive days…[Read more]

Thank you for your most encouraging post. It is perhaps a shame that Stephen relapsed as soon as he did but he and you will be relieved that he has responded to the Velcade. Please do keep in contact; I would be most interested to hear how the next mobilisation and collection goes.

The very best of wishes to you both.

Stephen

Many thanks for your comments. Looking back on your posts, you?ve obviously had mixed experiences; very different to my own. I find myself so often saying how fortunate I am ? especially when compare to other patients I read about and meet in clinic. I am especially fortunate to have encountered excellent support ever since I was…[Read more]

28th May 2012 – I attended…[Read more]

It was because I was in the Myeloma XI trial that I was first randomised onto Revlimid. At first it worked OK but the 4th cycle indicated lack of response. The trial then randomised me onto Velcade but my paraprotein did not go down,…[Read more]