Hi Sue, that it.
You know if i was in your position I would still go for the myeloma X1 trial regardless of which combination you get.
My pp reading at the start of my myeloma X1 trial was 44 by the end of the trial it was at 7, so that gave the SCT team a real good base at which to start.
If you can grin and bear the needles it will be worth…[Read more]

Hi Maureen

A Happy New Year to both you and Ian. I’m glad Ian’s cough disappeared before Christmas and that you had a good time over the festive season with your son and grandchildren. Like you, I also increased my weight due to all of the chocolates, biscuits and extra food I was eating whilst being off chemo. My son’s were great over Christmas…[Read more]

Hi Avril

I hope you find the information session useful in Norwich, as well as thoroughly enjoying your upcoming holiday with the warmth of the sun. Do you know of any reason for your light chains increasing, i.e. have you had a cold virus or an infection? In the past, my light chains have increased by around 300 following a cold virus and…[Read more]

Hi Dawn

Your pp results have been excellent following your SCT which is great news and long may they continue to remain low. It’s worth asking for regular light chain tests as part of your monitoring process at your regular visit to your consultant in order that you can monitor whether they are remaining at their present level or increasing. Now…[Read more]

Hiya suenev.
I am terrified of needles!!!!!
I was diagnosed 4 years ago with mm, I was randomised and put onto the Myeloma X1 trial. It is an all tablet drug trial, I had a monthly blood test to monitor the pp’s etc. Occasionally when attending clinic an additional blood sample was requested for the trials people to monitor progress. I don’t think…[Read more]

Hi Avril

It’s good to hear that you have an excellent relationship with your myeloma team. Hopefully you will not require any further treatment for many years. If you are curious about treatments, I don’t know whether you have attended a myeloma uk information day, but there is always a very interesting and informative part of the day which…[Read more]

Hi Avril

I think the decision as to whether you need further treatment is very much decided by the specialists based on each myeloma patient’s medical history and any current concerns. Various factors appear to be taken into consideration by your consultant in addition to your light chain levels which include: whether your blood test results are…[Read more]

To just to follow on from Andy, I had SCT and it didn’t really work. My IgG went down from 36 to 24 post SCT. I believe in the UK they wouldn’t even consider SCT if the Paraprotein level is above 1(I live overseas). The other point is that for a lot of people remission post the first SCT only lasts 12 -18 months as was my case. After all that it…[Read more]

Good thought Tony and we must thank all those internationally doing research to to find a cure. I think we should also remember all those who didn’t make it this year, let’s be positive about our future as so many of them were for theirs.

Oh and Leicester City FC are still working miracles so lets see if we can.

Richard

Hi Georgie.

Sorry for the long delay in responding to your post as I’m over 50 I don’t regularly check this part of the forum.

As regards your original post regarding running it is generally advised to avoid high impact sports as myeloma weakens and damages bones. I myself was a runner and was training for the London marathon when my first…[Read more]

Hi Peter.

Glad your medic was on the ball and switched you to Pomalidomide before it was deemed to expensive for us meer mortals that rely on the NHS. I hope 2016 sees you and Pomalidomide building a good relationship.

Every day is a gift.

Andy.

Hi Vicki.

I really hope things are starting to get better for you. I can’t imagine how hard it’s been for you. My heart breaks a little more every time I read of an online friend passing. I applaud you for your fundraising though my personal thought is maybe you should take a break from the myeloma world and concentrate on a bit of “me” time.

I…[Read more]

Hi Sandie

Time to grieve is not something that we decide,it’s not something that you can just decide to do,it comes in so many different forms,to me it’s a bit of an ambush,one minute ok next the tears slip down my cheeks.

The house to you has been important ,but it’s not your love or your memories,just 4 walls and a roof,your love of your mum…[Read more]

Hi Julie

Unfortunately like others have commented, for some myeloma patients fatigue can be part of the cancer and as a result of the side effects of the treatment. There are some useful tips on coping with fatigue on this site under the downloadable documents as well as information on the myeloma beacon site. I know how your husband feels…[Read more]

Hi Julie,

Feeling tired and the weariness of fatigue are common problems during treatment phases for MM. Thankfully it passes although 4 months after SCT I have seriously tired days, usually after I have inadvertently over done it the day before. Listen to your body and adjust your activity accordingly is good advice.

Best wishes Karen

Hi Tony

Sounds so similar to our household. Our no 2 son was on crutches last Christmas following an ankle op after messing around during a first team league cricket match with a football and got himself kicked on the ankle without any protection.

Sorry to hear about your stay in hospital, but it’s the best place to be if there is a suspected…[Read more]

Hiya Jan, funny, so many households are similar. We’ve decided that health issues will take priority. At the moment,our number 2 son has recently had a foot operation, so he’s on crutches, his son, age 3 gets every cold imaginable, brother in law has smoldering waldenstroms! daughter is having her first baby early march, but has sticky blood so is…[Read more]

Hi Maureen

With a low immunity, you always worry about whether a cough is going to develop into a chest infection. No doubt Ian will be monitoring his temperature over Christmas and at least you will both be able to relax a little with xmas dinner at your son’s house, although you will probably both be exhausted playing with little energetic…[Read more]

Hi Sandra, I know what you mean about being in shock once the consultant mentions further possible treatment, especially when you only have limited time during an appointment and it’s been four years since your last treatment. When my light chains started rising three years ago, I started phoning the myeloma nurse at the clinic before my next…[Read more]