[mhnevillParticipant]

Hi Sarah Jane

Good luck with trying to get your blood results. I try to use the Diary, but I seem to have considerable difficulty getting mine. Not helped by the fact that results of PP levels seem to take a fortnight so are never available at Consultations. Am often promised a letter or phone call, but they don't come!

Other results to watch are Hb. Mine are only now back up to normal after CDT.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Daniel

So sorry your Dad has relapsed. I can understand how worrying this is for you and difficult for you to cope with. I can see why you are asking "how long", but as otheres has said, it is just not possible to say. From what I have seen, not even Consultants can be certain until the very last weeks. Things are so much better and there are so many treatment options. However, as you may remember from your Dad's first SCT, he has a hard time ahead. I'm sure you will be able to support one another through this. I do hope you are able to talk openly to one another.

Like others have said, do seek out one or two folk to support you.

Lots of love.

Mavis

[mhnevillParticipant]

Hi Deb

I too sm sorry to have to welcome you to the MM Club! Sorry you have got it so young. I am nearly 68yrs!

As others have said, if there ever was a time to have MM, now is the best. There is so much expermentation going on, and, also so many new drugs available.

Very best wishes for the decisions being made for your treatment. Get fighting, we are here to support you.

Mavis

[mhnevillParticipant]

Hi Keith

What a blow that the Bendamustine seems to be loosing its grip. As you say, you are in God's hands – is there a better place? It still doesn't mean we don't have to battle on. I was very impressed by one of the participants on this week's "Songs of Praise". He was a paraolympic who was trying out bionic legs. He said, at the beginning, after his accident, he had to choose whether to cling to "hope" or give in. The theme of the programme was "Hope". It gave me a good boost.

CDT worked well for me (I had six rounds) and am now in remission. It means I have Velcade "in reserve", as it were.

I do hope 2013 is as good a year as possible for you. We battle on together.

All blessings.

Mavis x

[mhnevillParticipant]

Hi Peggy

Sorry to hear you ahve had such a bad time and with complications at home -what are they doing!!!! They must be in a sorry state too. Hope both sides soon get the all clear.

At least yu are on the right side of the SCT, even if it has been such a bad experience.

I sympathise about the hair problems. Although I didn't lose all mine while on CDT, it did get really thina fterwards. It is only just getting something like – and it is still very fine. I found the "Ozzy" brand of hair products very good. Even better than the "specialist" ones I was recommended.

Lots of good wishes.

Mavis x

[mhnevillParticipant]

Hi Sal

Sorry we have to welcome you to this site on your Dad's behalf. In view of his age, I do hope someone will have agood chat with him about what treatments are realistic and will still give him the best quality of life possible. I am nearly 68 yrs and was diagnosed in 2019. My approach is to have the lguhtest treatment possible while trying to keep this beast at bay. Like dia says, those of us who are older are not usually offered a Stem Cell Transplant. Myself, I would not want to go down that road and with your Dad's heart condition I am sure it won't be offered. However, there are lots more things out there.

The most important thing is to be as free from pain as possible. I take Oxycodon 30 mg twice a day. For ages this has been really good. I have recently had more arthritis type pain so am back on Diclafenac as wekk. My Pain Nurse says morphine type drugs do not always work with bone pain. I had a course of radiotherepy, in 2010, after having a tumour removed from my back. Athough I hated the actual treatment, (I am a bid lady and found it difficult to fit on the radiotherepy table!) it di help the pain.

All best wishes to you. My daughter is 240 miles away so I knoe the problems distance causes, but we have just started to Skype which means i can get to see the grandsons. Best wishes to your Dad too.

Mavis

[mhnevillParticipant]

Hi Heather

Welcome to you and John from me too. I do hope you got on well with the Consiltant yesterday and understood what he was saying. You obviously have a lot to cope with as well as a lot to contend with. This is a strange illness to come to terms with.

Like John my myeloma was diagnosed after lots of treatment for arthritis. I have had four hip operations! Arthritis pain can act to mask MM pain.

I haven't had Velcade, just one successful series of treatment with the usual chemo regime (CDT). However, for those on it, who can get along with it, it seems to be doing good. Do hope this is the case with John.

One of the problems with Myeloma can be continued back pain. If John has it, make sure he sees the Pain Team to get the best advice.

I wass diagnosed in 2010. Life goes on!!!

All best wishes.

Mavis

[mhnevillParticipant]

Dear Mary

So sorry to hear your sad news.

All love.

Mavis x

[mhnevillParticipant]

Hi Sue

Had missed your last post. sorry you have been so low, but it is so understandable. I had been thinking of you both, especially over Christmas, I know what a difficult time it must have been.

As everyone says, do keep nattering support staff about the pain control.

Lots of love and prayers.

Mavis xxxx

[mhnevillParticipant]

Hi Keith

Hope you begin to feel better as the new treatment kicks in.

All the best for 2013. May it be a much better year.

Best wishes.

Mavis x

[mhnevillParticipant]

Hi Dai

All the best for Monday. I do hope the new treatment is successful and trouble free.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Helen

A bit late, but wqnt to say great news that you at last feel "well". Hope you have had a good Christmas.

All blessings for 2013.

Love Mavis x

[mhnevillParticipant]

Hi Dai

So glad you got home for your birthday and Christmas. Do take care and all best wishes for the start of the treatment.

Love to you and Janet.

Mavis x

[mhnevillParticipant]

Hi!

So pleased for you Val. Keep well for very long time.

Love Mavis x

[mhnevillParticipant]

Hi David

Glad there was good news. Happy Christmas and Happy Birthday!! Thosw PP numbers are still very low. Some folk get upto 40/50 b43fore treatment. My Consultant said it depends how quickly figures are raising and whether there are any other health complications.

Love

Mavis x

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