Hi Susie, I have read a little on the internet as my Consultant had said don’t wait until I have pain before rescheduling appt if any changes. Changes he suggested were really quite subtle and related to renal function.

One of the American sites says it is important to tell your doctor straight away about any new pain as they might want to xray…[Read more]

Hi Graeme, sorry to hear you have chicken pox, I think the vesicles are infectious until they dry up and scab over. With chicken pox they tend to come out in crops. I used Calamine Lotion for the itching with my sons.

Hope you feeling OK and they settle quickly.

Kind regards

Karen

Hi, in answer to your query ref SCT? My pp level prior to SCT was 44, after SCT it was at 1.9. Stayed that way and has slowly gone up to 2.9. I am not on any medication, and have had one bout of infection since SCT. I am 70 in August, had SCT 18 months ago, feel and look good. Went to USA and Hawaii recently, had several UK holidays! get a bit…[Read more]

Oh my Jill, a smile moment, dear friends always create opportunities for coffee and cake.

I haven’t tried to get travel insurance yet so thanks for the information about Columbus. We hope to take a break immediately after next appt in a couple of weeks so really helpful.

Kind regards Karen

Hi Helen.
Yeah we’re back from our trip to Greece. Had a good time the weather wasn’t fantastic but it was good enough and not too hot! Already booked for a trip back in September as long as I stay healthy.
I had an appointment at maxo facial before we went and it was confirmed I have osteonacrosis of the jaw. Though all was deemed necessary was…[Read more]

Dear Mike

Thank you, you have not alarmed me. At the moment I feel that all information is extremely useful to me. It is hard not to over interrogate every thing I would previously shrugged off.

I have appreciated ( more than I can express) the advice, information and support I have received through this site.

Kind regards

Karen

Hi Maureen
Steph and I are going to the Newcastle, it’s in Gateshead really, info day on June 7th. It our second time and we found the first very informative.

Every days a gift.

Andy xx

Dear Mike, thank you for the helpful posts, I have really appreciated the information and feel much more prepared for my next appointment with the Haematology Consultant.

Kind regards

Karen

Hi Jill, I did a literature search online and found a few papers relating to the use of bisphosphonates in active myeloma but nothing relating to use in relation to delaying onset if prescribed when a person is asymptomatic. It is on my list of questions for the Heamatology Consultant. Thanks for the information.

Like Susie I dread the thought of…[Read more]

Hi Susie, you might think I am a bit hopeless, but I didn’t ask. The Consultant said ” the proteins are too high for MGUS so you are asymptomatic”, told me the management plan and I scuttled out of the consulting room.  I have requested a diary and am going to get all my results to date recorded for me at my next appt.

I am on two monthly m…[Read more]

Hi Andrea, I think I am lucky as well because of early diagnosis. I am trying not to worry ( not always easy) and really appreciate all the helpful responses I have had to my post.

It is certainly a different life, I will request a Myeloma UK Patient Diary which I am sure will be helpful.

Best wishes with your treatment.

Karen

Hi Susie, I can see why you are concerned. I am no expert but I would have thought that a pp level of 36 would trigger some form of treatment. I was diagnosed with myeloma with a pp reading of 44, my chemo treatment started, followed by a stem cell transplant. My last pp reading 15 months after stem cell transplant was 2.2 having risen from 1.9.…[Read more]

Kalimera Helen.
Sat in the Greek sunshine.
Just read your post and I can totally understand your dilemma about having a transplant. I tried putting myself in your shoes and I couldn’t come to a completely satisfactory conclusion as to the drugs versus transplant argument. I know when I was told I couldn’t have an Allo I was gutted but that was…[Read more]

Thank you to all for your replies. I guess the message is “stay positive, live your life each day and get used to the uncertainty”.

I have never  lived my life in two month time slots and so this might be the hardest bit to adjust to. Otherwise I have always been a positive person and hope this will help me through the next few months as I…[Read more]

Oh crap! Half of my post has disappeared! First I can’t get signed in now this!!

Anyway Helen you probably know more about your options than anybody else on this forum though I do suppose that could be a curse rather than a blessing at times.
My latest news is last weekend was my nieces sons birthday so we had a little party. Wednesday I got a…[Read more]

Hi Helen.
I’ve got to say that your consultation sounded very much like the one we had with the prof. almost 2 years ago. He did scare us a bit and was pushing us towards an Allo since my bone marrow was to battered to be considered for an auto. Though in my case a match for an Allo couldn’t be found.
I had 22 cycles of Revlimid and though it…[Read more]

Thank you Rebecca, all good advice and you are right, some of the information out there is very scary. I have found this site very helpful and hope that in future I too can contribute and support others on this confusing journey.

Kind regards Karen

Hi Sal
I’ve had DTPace. I was stuck in hospital for the 4 days with all the infusions going on 24/7 You don’t get much sleep with the alarms going off all the time! And going to the loo is an experience and requires a lot of dexterity. Don’t know his you’d manage if you were in a rush!
I only had one cycle as it was deemed not to have worked. I…[Read more]

Hi Helen
Sorry to hear that you’ve relapsed. You really have had a hard past few years.
Speaking as someone who doesn’t know what it’s like not endure the round after round of treatment, except brief spells when I was to ill for the treatment, I get really jealous of those who go into remission. As you know I’ve been through the myeloma handbook…[Read more]