Well, another two hour wait, but another two months now before next monitoring appointment so all good.

Hope you all keep as well as possible

Kind regards

Karen

Hi, I didn’t know anything about this either so looked it up and found this:
A rare form of histiocytosis.

Associated with an abnormal antibody in the blood called a paraprotein.

Lipid levels are normal.

About 50% will have a malignancy of the blood; usually multiple myeloma or leukaemia.

Presents with large flat reddish-yellow plaques over…[Read more]

Hi Susie

I have just got home and read your posts and Jill’s responses. All I can add is that I contact my Consultant through his secretary, this is what he told me to do if I need to advise of any changes /concerns.  So first point of call might be to ring the hospital and ask to speak to the medical secretary for your Consultant, leave a…[Read more]

Oh Susie I am sorry to hear your news.
You are not hogging my topic. I like to think of it as a shared thread which hopefully we will all benefit from. So sending you a virtual hug and a big thank you for sharing your journey with me.

But on a more positive note I think Mike also said that MRI’s are being considered as very helpful in…[Read more]

Hi Angelina,

How frustrating for you when your notes are missing. It is a worry as well if they are not using electronic patient records how do they track your progress effectively?
Although it must be reassuring to know that the Doctors are going to share information about your test results. They should be working together to make your journey…[Read more]

Hi Stuart,

As a newcomer to the site I haven’t found any difficulty in navigating around or signing in. I just wanted to say I find it a bit unnerving how public the forum is. It put me off posting for a few weeks because I could read posts, without signing in.

I understand that this approach is probably to ensure that those people who wish for…[Read more]

Hi Karrieanne,

I have assumed that the paraprotien levels must have the potential to rise quite quickly, or blood test results start to show organs, for example kidneys/renal function, being adversely affected. Two monthly monitoring is maybe a “safe” option initially until a series of stable test results give an assurance that the cancer is not…[Read more]

Hi Angelina,

I noticed you had not had a reply as yet and thought I would say hello.
Sorry I do not have pearls of wisdom to help you. I am a newbie to the Forum and just coming to terms with the diagnosis myself. It is so hard to understand this disease which seems to affect everyone slightly differently.
I find it strange that the presence of a…[Read more]

Hi Karrieanne, I read your post with interest. An earlier post describes life after diagnosis as having the sword of Damocles over your head. Which feels about right. It really is not easy not to think about it, I find it is the first thing in my head when I wake up and last thing in my head as I go to sleep. But I was diagnosed only a few weeks…[Read more]

Hi Susie,

I hope you are feeling reassured, good luck with the exercises. I will be interested to know how you get on.

Best wishes Karen

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

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

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

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

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]

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