[mhnevillParticipant]

Dear Eve

I do send you my deepest sympathy that that which you had both expected and dreaded has happened. In spite of a valiant battle by both of you, Slim has finally been defeated by this dreadful MM.

I do hope, that as you plan his funeral service, it may come together as a celebration of a life well lived and of the strong bond between you. Love cannot be defeated by death.

Please be assured of my love and prayers at this devastating time.

Mavis xxxx

[mhnevillParticipant]

Hi Susie

It may be worth taking part in the antibiotic trial. If you did get the antibiotic it could stop you getting shingles or other complications of being on chemotherapy.

Best wishes, whatever you decide.

Mavis

[mhnevillParticipant]

Hi David

Thank goodness for some good news at last!

Hold on in there.

Beast wishes. Mavis

[mhnevillParticipant]

Hi there,

I always think we are the key player in any decisions made about out treatment. Certainly if/when I relapse I shal try to get CDT again as it brought me into complete remission this time.

If you aren’t happy with what is being suggested and team are not willing to discuss things, you could always ask for a second opinion as several on here have.

Another thought, is there a Specialist Nurse on your team? They could be a good support.
Also, don’t forget the MUK Help Line. A marvellous source of up to date information.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Helen

Just to put another view! I was on CDT for six rounds. It wasn’t easy as I had a metallic taste that meant I only fancied strong flavoured food, my hair thinned, zi got shingles and spent one week in hospital with sickness, but having said that, I didn’t really find it too hard to cope with. It got me into complete remission in which I remain nearly two years later and no SCT. I am now 69 yrs and just on 4 years post diagnosis.

They can reduce the dose of thalidomide to lessen side effects. I always think it helped the success of my treatment.

Best wishes to your uncle and to you as you support him.

Knowing as much as possible about treatment options is helpful so that your uncle can be a partner in the decisions made about him.

Mavis

[mhnevillParticipant]

Hi Helen

What a lot to cope with. The Indurance thing is a real trial isn’t it. I can’t get insurance because of all my health issues. I take a chance when I go to Luxembourg, but it is different because we are at my daughter’s. Bit more problematic if you are “on your own”, as it were. One of my 50 – List for Life things is to get to Italy next year. I will really have to shop around for cover for that. I think I heard of a firm that will cover you if you arrange it just six weeks before travelling and have a Dr’s letter of support. I don’t know about you, but it is the repatriation costs that scare me, not loosing the travel costs.

Ironically we have had to cancel our trip to Luxembourg, planned to start tomorrow. My husband was admitted to hospital a fortnight ago, and is now waiting for a pace maker to be fitted! Hopefully we can reschedule for a couple of months time. We never know what is round the corner, do we. We are just glad he has been diagnosed as he has been having funny turns for some time now.

We do have to “seize the day” don’t we.

Have you officially finished work yet? Hope you get the holiday you deserve.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Susie,

I can see that the site of your plasmacytoma is very differently sited than mine. Mine was golf ball size and wrapped round one of my vertebrae, can’t remember if it was T10 or T12. The thing was it was also around the spinal cord so it was very dangerous when they removed it. However, I had a brilliant surgeon at a Leeds LGI and the op was very successful.

I remember having. cT scan so they could find out more about what they were dealing with.

I’m glad you’ve got confidence in your Consulatant as that relationship is so vital. Although I rarely get to see the a Consultant these days, I am very fortunate with the team at Bradford RI.

All best wishes for your future treatment plan. Do keep us informed so we can root for you!.

Mavis

[mhnevillParticipant]

Hi Andy

So pleased to catch up with your very encouraging news. So glad you ans Steph are able to celebrate in an appropriate way!!

Do hope you can plan another trip soon.

Very best wishes. Yes, every day is a gift!

Mavis

[mhnevillParticipant]

Hi Jeffery

Well, by default you have had to take things in your own hands. Sometimes though, I feel it is best. Can you tolerate something like Tramadol till you can build up to your original morphine dose?

All best wishes.

Mavis

[mhnevillParticipant]

Hi Anthony

Sorry you have come out of remission so quickly. A real bumber. I do hope that Velcade does suit you and foes get you into a full remission without PN.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi John

Sorry your Dad has been having such a bad time. It sounds as if the chemo is doing the trick. The problem is, following remission, is that improving mobility depend on getting supportive physiotherapy. I have re mobilised twice from MM and four times following hip operations. It isn’t a bed of roses, but you can improve whatever your present situation with determination. I currently am suffering from bone damage to my shoulder. As I have been told physio won’t help, I am now taking private Alexander Technique lessons. I am amazed how they have helped.

Re SCT. I am 69, 65 on diagnosis. For all sorts of reasons I didn’t want to press for a SCT. It is true I have lots of bone lessions, but, after 6 lots of CDT over 18 months ago I am still in complete remission.

Not an easy cancer to live with, but there is hope.

Very best wishes. Mavis

[mhnevillParticipant]

Hi Susie

So sorry to hear you have progressed to full blown MM. Although you must have known it was a possibility it doesn’t stop it been a body blow.

Sorry to hear you have a plasmacytoma on your spine. How are they going to treat it? Are you to have an operation? I had a plasmacytoma removed from my spine four years ago. It was then I was diagnosed with MM. My operation was followed up by radiotherapy. I think some people are treated just by radiotherapy if the plasmacytoma isn’t wrapped round around a vertebra.

I have had 6 lots of CDT and am now in complete remission. One thing about being on a Trial is that you will be very closely monitored and on the forefront of treatment options.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Hmj

I am so sorry to read of your Dad’d passing, but it is obvious he fought this dreadful Mm to the last.

It was generous of you to post at this sad time, because as Tony says, the story of your Dad’s 19 years will be an encouragement to so many of us.

I am sure that you will have inherited your Dad’s strength and determination to make life count, in spite of all it’s difficulties.

Do keep bringing the good memories to mind.

Lots of love.

Mavis x

[mhnevillParticipant]

Dear Sarah,

I believe it is your beloved amsrk’s service today. If I have got it right, I pray you will find much comfort, not only in the words of the service that Mark had lovingly prepared, but also in the many friends who will come to support you.

You are quite right! Our faith that death is not the end, gives us courage to go on, but it doesn’t take away the pain.

Be gentle with yourself and allow yourself to grieve.

God bless and comfort you.

love Mavis xxx

[mhnevillParticipant]

I would also like to express my sadness at Eva’s passing. She will be sadly missed. I send condolences to her family who will have stood alongside her and suffered too because of this awful illness.

Mavis

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