[kpParticipant]

Hi All,

I too felt more settled after reading Mike’s post, particularly after appt this week when my status was described as “relatively stable”.

Just to note how difficult people find it before their appts, my husband and I (along with the rest of my family) are so anxious and twitchy and frightened. It is such a relief to be told , see you in six weeks although my PP’s and FLC’s continue to rise steadily with no signs of end organ damage there is reassurance in frequent monitoring. The Registrar told me they would intervene rapidly if there was any sign of a change ( I gave him a copy of the review paper re updating criteria Mike highlighted in another thread and asked questions about management of my ASM which he answered and he accepted the paper with equanimity and said he would read it).
He must have thought I was really intense as I ended up perched on the front of the chair and leaning so far forward towards him I was in danger of falling off.

Keep smouldering,

Karen

[kpParticipant]

I have to agree I would wish to smoulder forever, but don’t want to wait for treatment until there are signs/symptoms organ damage.

I have found the article online but will take a couple of read through’s to grasp the key concepts so thanks to Mike for the helpful précis of updated criteria.

I wonder what my Consultant will make of this and whether it will impact upon his decision making in my case. Seeing him for monitoring in a few days so will take a copy of the article. No harm in asking the questions I suppose. Up to a year seems a long time to wait for changes that could improve outcomes to be implemented.

Best wishes to all

Karen

 

[kpParticipant]

Hi Susie, I am monitored 6 weekly at present, last PP was 39. It is an awful disease and different for everyone which I think makes it challenging to manage.

I was only diagnosed in April this year so still trying to come to terms with it all.

I haven’t had a bone marrow biopsy as blood tests don’t show any end organ damage.

Hope you are tolerating your second cycle OK.

Keep well

Karen

 

[kpParticipant]

Hi Susie,

Hope all goes well for you on the second cycle and not too many side effects.

I had a monitoring appt recently and numbers up again, but no signs of any end organ damage and I feel OK in myself so continuing on the wait and watch protocol for asymptomatic.

It is so hard to define ” fatigue” isn’t it as sometimes I am really tired by mid afternoon and even if I sit and rest for a bit I don’t really feel refreshed. Is this the MM or perhaps I,m not as fit as I used to be. Who knows!!!!

So I am carrying on regardless.

Glad to hear they are going to treat the plasmacytoma, hopefully this reduce the pain you have been experiencing.

Best wishes

Karen

[kpParticipant]

Hi Susie, hoping you are doing OK and coping with the treatment regime.

Kind regards

Karen

[kpParticipant]

Hi Jan, what an awful experience for you both, I am not surprised you have been scared and hope he is getting sorted out by the Doctors.

Do you think that you could use some counselling? it must have been so traumatic for you and might help to “talk it through”

Hope things start to improve

Kind regards

Karen

 

[kpParticipant]

Hi Brian

Sorry to welcome you to the MM club. I got a lot of helpful advice on the “confusing journey” thread.

I too hope to stay asymptomatic for as long as possible. The hardest part has been getting my head around the no treatment until there are signs and symptoms that the MM is causing end organ damage. It has been described as the Sword of Damocles, which is exactly what it feels like.

Stay well

Karen

[kpParticipant]

Hi Susie,

Sorry I can’t help you with advice re the meds regime but sending you a virtual hug. Hope you are feeling a little better now. One of the posts on the “confusing journey” thread advised me to listen to my body and rest when it was telling me to.

Seems good advice particularly as you adjust to the effects the drugs are having upon you.  I guess you can ring the helpline as well, I have only rung up once and they were really supportive and perhaps more importantly, kind, when I felt I needed direction.

You asked about my levels, I am due a monitoring appt, going for bloods tomorrow so will let you know how I get on following appt next week but I think your need for support and reassurance is greater than mine right now.

I will private message you my new Consultant as the Forum is so very public.

Best wishes Karen x

[kpParticipant]

Hi Nick, all good advice from previous posts. This is a fabulous place to get the advice and support you need.

I can’t offer any additional advice except maybe to reinforce the fact that Myeloma is treatable ( if not curable) and she has the same chance as the rest of us of achieving remission and a good quality of life for many years.

I wish you success in supporting your Mum to take the treatment route, her outlook is good because she has no bone damage. My Consultant told me I was lucky to be diagnosed before any end organ damage so perhaps after your Mum starts to recover from the initial shock of the diagnosis she may be able to see things in a different light.

I have been referred to a Councillor because I have struggled to come to terms with my diagnosis, only one session as yet but she has really helped me to start to understand my anger and fearfulness. Maybe this is available in your area?

The other person who may assist your Mum ( and you) is the Nurse Specialist.

Kind regards Karen

 

[kpParticipant]

Well folks, I have not been on the site for a few weeks, I had asked for a second opinion as I was told that I would definitely be on treatment within 18 months and couldn’t understand how that could be predicted in MM. Sooooo upset by the news. I had really thought that I might stay Asymptomatic for some years yet.

Anyway, still definitely asymptomatic but the numbers are going up, on six weekly monitoring now.

No treatment for the Haemachromatosis because the Gastro Doctor said ” that is the least of your worries” .

My (I think ) Ferritins over 800 but below 1000 so he happy to watch and wait as no sign of liver damage at present and because I am anaemic the treatment/phlebotomy could make me unwell, tired etc.

Onwards and upwards, I wish you all well

Karen

[kpParticipant]

Hi Susie,

I haven’t been on for a while, it looks like I too will be joining the ranks of MM on treatment shortly as all the numbers going (quite quickly) upwards.  Now on six weekly monitoring and feeling a little sorry for myself, so like a little turtle popped my head back into my shell.

I can understand why you would not wish to join the trial, sometimes the side effects for treatments are quite scary but isn’t the news in the Myeloma UK newsletter heartening.

Wishing you all the best, and hope you stay as well as possible through your treatment programme.

Sorry to hear your news Mike, fingers crossed for your October blood test result

Very best wishes

Karen

[kpParticipant]

It is good to hear from you Don, glad all went well and hope you feeling stronger every day.
Best wishes Karen

[kpParticipant]

Hi Susie

Glad to hear all went OK, although I am sure you will be waiting to hear back from the Consultant.
It  is such a waiting game this MM isn’t it.

Sorry you are still in pain with sciatica.  Hope all is well when he rings you back.

I have a small heat cushion which I warm in the microwave and put in the small of my back when sciatica kicks off.  The warmth is very soothing so I think it helps.

Best wishes

Karen

[kpParticipant]

Hi Susie,

Definitely wishing you luck for tomorrow. I am sure you are feeling worried about what they have to say. I suppose the “but” is that it is oddly reassuring that behind the scenes the Doctors are working to keep you as well as possible.

I am sorry to hear you have been in pain, sometimes physio seems to make it worse before it gets better. At least that was my experience a few years ago. Hope your sciatic nerve settles soon. Can you take anti inflammatory meds ( ibuprofen?) as I understand sometimes it helps to take them regularly for a few days so the inflammation starts to settle. Probably best to ask the Doctor tomorrow.

Karen

[kpParticipant]

Dear Don,

Best of luck for your operation tomorrow. I am sure you are in good hands.

I look forward to hearing how you got on and also how the nurses cope with your irrepressible humour. I expect you will be like a breath of fresh air as you recover from the surgery.

Best wishes to you and your social secretary, financial controller and life organiser.

Karen

• This reply was modified 9 years, 10 months ago by  kp.

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