[kpParticipant]

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 through services seamless and reduce unnecessary duplication of tests etc.

I have asymptomatic Myeloma and Haemochromatosis. I am lucky in that it was picked up through routine screening. I feel generally well although I get tired and as my next appt looms I am feeling anxious in case my paraprotiens up again. But this is the nature of the disease. On the thread I started someone posted it is like the sword of Damocles hanging over your head. Not very positive perhaps, but very apt.

I hope they feel confident they are managing your blood abnormalities effectively enough to commence treatment for the MS  soon.

Look after yourself and I also hope you are keeping as well as is possible.

Kind regards Karen x

 

 

[kpParticipant]

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 information, but don’t want to register or post have access to the discussion threads which are so helpful but I would feel more comfortable if personal identifiable information wasn’t visible to non registered site visitors.

I wonder what other Forum users think………?

Kind regards, sorry to be a bit paranoid,  Karen

[kpParticipant]

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 aggressive. I thought I would ask about this when I next see the Haematologist.

Poor man, I have an issues log a mile long now, perhaps I need to select the most important things I want to discuss as part of the shared decision making on my care.

Looking forward to hearing how you get on, you are right it is good to have people who are on the same journey to share experiences with and to learn from. How amazing is this virtual world we all inhabit now.

Kind regards Karen x

[kpParticipant]

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 lytic lesion hasn’t prompted treatment but if your proteins are below 30 then I understand it is MGUS which may be why you have been treated conservatively. It sounds like you have had a tough time and I hope your appointment with the Heamatologist was OK.

Best wishes

Karen

[kpParticipant]

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 ago so hope this aspect will get better.

It was so hard to tell my family, who have been so wonderful and supportive. But I recently told a friend and she said, but you look so well you must be fine………..which I suppose I am whilst I remain asymptomatic, but it was a bit of a disconcerting response to what for me  has been a life changing diagnosis. Then someone I don’t know very well (and probably wouldn’t have mentioned my diagnosis to) asked me if I was alright because she thought my eyes indicated I wasn’t well??

I do get very hot, particularly the back of my neck which was something I had never experienced before. Since it started a couple of years ago I had thought it was a menopausal thing, and then that my internal thermostat was broken but I have read since that night sweats are a symptom of MM.

I hope you have found this thread helpful, I have had so many informative and supportive posts I don’t feel so alone.

Keep well and best wishes Karen

[kpParticipant]

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

[kpParticipant]

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 just to check. The other symptoms the site described are the types of pain I get in my shoulders,hips and elbows ( I have some arthritic changes) so not very helpful really.

I wonder ( if you have not already done so) if you should get in contact with your Consultant and move your appt forward. It would be a reassurance I hope if they are able to confirm the pain you experience is related to OA and perhaps give you advice re anti inflammatory meds and pain relief as your sleep is being disturbed by breakthrough pain.

Your GP might be another person to ask.

Best wishes

Karen

 

[kpParticipant]

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

[kpParticipant]

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

[kpParticipant]

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

[kpParticipant]

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

[kpParticipant]

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 having my life taken over by hospital appts, but I don’t think I  have much choice at the moment and am waiting anxiously for the Gastro appt to arrive.

Thanks Mike for advising as far as you know there is no link between Haemachromatosis and Myeloma. I feel a little unlucky to get a double diagnosis. It is hard to come to terms with the dramatic change in my health status but I do understand it takes time to adjust and it has only been a couple of months since I had the positive Bence Jones and suspected that the weird blood chemistry was Myeloma.

I thought I didn’t have any symptoms but think maybe the tingling I get in my feet, and funny cramps in my fingers and toes might be related to the paraprotiens.

There is comfort in reading peoples stories particularly when they have remained asymptomatic for some years. I hope for this stability for myself, but only time will tell.

Best wishes

Karen

 

 

• This reply was modified 9 years, 12 months ago by  kp.

[kpParticipant]

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 monitoring but everything I have read so far indicates if pp’s over 30 then it is not MGUS, it is asymptomatic.
I asked about the bone marrow biopsy but Consultant said it would only confirm what blood test results indicated. Purely scientific at this point in my journey and only to be undertaken “when” I need treatment.

It is so confusing, and you must be concerned between appts, I know I am and I have only had two so far.

Very best wishes

Karen

 

• This reply was modified 9 years, 12 months ago by  kp.

[kpParticipant]

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

[kpParticipant]

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 adjust to a diagnosis of a cancer which is treatable, but not curable.

I didn’t ask what my paraprotiens were on my last visit Keith, too shell shocked I think that I had moved from MGUS to Smouldering in only two months. I hadn’t expected that but from reading I have done I guess this means they are over 30.  Maybe I should be asking for copies of the blood test results, do other people do this?
There do seem to be a lot of people who are very well informed about their MM status but I am not sure just how much I want to know right now.

I was pleased for Ted when I read he has been Smouldering for 7 years, I hope this continues for many more years Ted.

I am a bit of a fan of the Tolkien Books and loved the scenery in the films Jane, New Zealand looks like a beautiful place. I feel better knowing that I can continue as usual except it has to be last minute .com for holidays.

Best wishes to you all, Karen

[Author]

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