My trial drug Revlamid has been halved, so its one every other day.
Am I in remission, or have I relapsed and what is the next step. I think
I got a bit comfortable when each report said pp not discernable. It was
a…[Read more]

This was followed by a very short remission. Now she has relapsed and a PET scan shows the MM is active and has spread to many areas of her body.

Her genetic test shows that…[Read more]

I was allergic to the full dose of 10mg and came out in a horrible red raised
rash.

So my dose was halved and I take anti-histamine tabs 3 times a day…[Read more]

How long before I get my pre SCT and CDT energy back.
I have a friend who thinks I should be back to normal by now.

I also have chronic backpain. whick I have had for years.

This is getting me down now and I think I should be able to do more.

My taste buds are working, but I still have no saliva!!

This mskes eating anything dry very difficult.

I have not had hunger pangs since before CDT.

John gives me small portions. but a lot goes in the bin.

Thanks

Tina

Although I can eat cornflakes and toast for breakfast, and porridge followe by yogurt for lunch,I have no interest in a meat and two veg type meal. I struggle to eat a child's size portion.

I have almost forgotten what hunger pangs feel like. I had my SCT on 10th October 2012. I know its not a long time, but I would love to…[Read more]

I was randomised (Myeloma1X) after sct and full remission achieved.
I am taking Revlimid 5mg for 3 weeks out of 4.

I am on my second lot, and so far no problems.

The question I ask is, how will I know if my remision has been lengthened if nobody knows the time scale without the drugs?

Take care everyone

Tina

Went to hospital yesterday to get the results of my latest bone marrow sample. Dr showed me a letter and it said "no trace of the disease found in the sample" 😀

I am taking part in the MyelomaX1 trial, and at the moment I am taking 5mg of Revlimid at night. I take them for 21days, then have a week off.I started off 10mg, but came…[Read more]

Yes, I had SCT in October and am in remission.

I have started on Revlimid 10mg as part of the Myeloma X1 trial.

Seeing consultant on Monday to see if a reduced dose of Rev ie 5mg would suit me and not bring on the rash.

Love
Tina x

Yes I have SCT in October.

I have had to come off the Rev for the time being till the rash has gone.
It has responded very well to the antihisimines and has almost gome.

I'm due back at hospital on Monday morning to see what my consultant says.
I don't want to come off the Myeloma X1 trial, but he says he could reduce the dose…[Read more]

The rash got worse, all over me, and itched like mad.

Phoned up the Myeloma nurse, and she said to come over and let my condultant see it.

Bear in mind the weather conditions! John had to dig the car out before we could go. at least the main roads were clear of snow.

The result is that I'm allergic to the Rev and have been put on…[Read more]

All I seemed to do last night was scratch!

If it is a side effect – then I shall have to put up with it.

Love

Tina

I start taking it tonight.

Love

Tina

I went to the hospital yesterday to have yet another bone marrow sample taken. Not as painful as the last one.

My blood test came back showing my pp level is non-detectable.

I am now starting the next phase of the Myeloma X1 trial.
I am on Revlimid and asprin, for 21 days then a seven day rest. Don't know how many cycles of this I…[Read more]

I have to go for a sleep every afternoon at 3.00 and my husband (John) brings me a coffee up around 6.30 – 6.45. Then I can stay up and watch tv till about 9.30pm.

I'm glad to hear that some else sleeps too.

Thank you Sue.

Tina

My appetite is not good and I stick to moist foods.

If anyone else has had the same problem, perhaps you could offer some advice.

Plus I am so tired all the…[Read more]

Now 7 weeks on, I think I have turned a corner. Still not eating much, cereals and porridge are my favourite. But I have found the Weight…[Read more]

Tina

Anyone any ideas? It must be a side/after effect of the chemo drug used just before the transplant.

Take care everyone
Love
Tina

Love
Tina P

Been home for abount 3 weeks. Stil not feeling well, Not eating, but drinking plenty of whole milk Coffee,
Can manager cerereal and a banana with ice cream.
Consulant said I had a bad time, and it will take me a long time to receover.

I am feling quite down about all this and find my self in tears. I also get to go bed and sleep…[Read more]

Thannks so much for your love and continued support. ITS certanly a long and difficult ride

I never thouht it would be so very tough.

it is humbling that to many people have taken time to mot not only read, but but give me the help I needed.

Thanks afain

Tina p

NOT feeling so chipper after 2 days at home.

Any any advice for those of us with baby stem cells, no appitite, and still feeling so sick.

Feel very vuleranable.

Any any addvice

TinaP

I'm due in to have SCT on 8th Oct (Monday)

What should I take in with me?
Bought pyjamas, liquid soap,

Anything else? Do I stay in pyjamas most of the time. It seems a bit silly to dress if I'm not leaming my room for 2/3 weeks.

My mind is all over the place as you can imagine.

Thanks

Tina x

Just to let you know.I go into hospital on Monday 8th October for my SCT.

It's been a long road since April when I started on CDT. But here we are!!!

I feel nervous and excited all at the same time.

Oh and I have 2 lovely wigs to keep my head warm

Love to you all

Tina

It took two attempts to get enough stem cells. But after the second try on Tueaday I have enough for 2 transplants.

The next stage is 5 small blasts of radiotherapy next week, starting on Monday.

I have been told to expect to feel tired and nauseaus.
Is there any other side effect I should be prepared for.
The radiotherapy is on…[Read more]

Just a progress report on my treatment:

6th Sept had Hickman Line fitted

7 ? 9 In Walsgrave for chemo. Had 14hrs of drips on the Saturday!

12th Sept: Started growth hormone injections to release the stem cells into my blood stream

17th Blood Count at Walsgrave.If this is ok, then straight over to Warwick Hospital for the…[Read more]

Line in ok. Slept ok, although I had a dragging sensation when I got out of bed.
Just rang the ward and my bed will be ready for 1.00. Then at 3.00 I'm seeing radiotherapy people to plan my course of treatment inbetween harvesting and SCT.

Wish me luck

Love
Tina

Iam on Myeloma X1 too. After finding a fractured vertebrae in December, I was put on 4 cycles of CDT. I'm having my Hickman line inserted tomorrow, then back to hospital for a couple of nights for the dose of cyclo….

Then I will have have my stem cells harvested.

All the staff at Coventry Univercity Hospital have been so…[Read more]

Back on Friday for Cyclo…(can't spell) and will stay in till Sunday.

After that, its all a bit of a blur at the moment. Such a lot to take in.

I've to have radiotherapy on my spine at some time too.

Any advice would be most…[Read more]

Did anyone else suffer from loss of appetite after finishing CDT.

I have been off it now for 6 weeks and the thought of a cooked meal makes me feel sick. I am now on slow release morphone night and morning for severe back pain.

Sorry for the moan. I do feel low sometimes with the constant pain in my back.

Take care all of you

Tina

I am off to the Great Dorset Steam Fair, at Tarrant Hinton. We go every year. As we are in the Motorhome, behind our marquee, I will not be mixing with crowds of people. I will probably sleep a lot in the motorhome, as I am still very tired all the time.

But it is a break from the same four walls.

I will try and put the next…[Read more]

Hickman Line being fitted on 6th Septmeber, then I'm not sure of the timescales after that.

So I am going to have a break, and try not to think about it too much.

Watch this space…..

Love to you all

Tina

I think most people have problems coming off the steriods after 4 days. I call them my 'douvet days'. I just wanted to sleep all the time. It's a really good drug, but the side effects are not good.

Hang on in there.

Tina

But I still don't feel right. I have felt tearful on a few occasions, and
very tired. I could sleep for England the way I feel.

I thought that when I came off the chemo I would start to feel fine.

I…[Read more]

I have been off CDT for almost a week now, but sometimes when I get out of bed, or move my head suddenly, I go dizzy. This morning, I was pulling the curtain, and ended up half on the floor and half on the bed,

Is this normal!!

Thanks

Love
Tina

Will try to forget about the next stage while I am away!!

Love Tina

Then it will be all systems go to get ready for SCT. Feel a bit nervous about having the line fitted, but have been told that it's not too bad.

Hopefully by the end of Sept/Beg Oct it will all be behind…[Read more]

I am on the last week of cycle 4 (my last) and I wondered how long the side-effects will take to ease.

1. The awful weakness that makes going upstairs really difficult.
You should have seen my husband trying to get me into the motorhome,
a lot of puffing and he had to lift my up with my bum! not elegant!!!

2 The bloating…[Read more]

I was diagnosed with smouldering myleloma in 2010 after a routine blood test showed something not quite right with my red blood cells.

I went on being monitored ever 3 months till Jan of this year. I had an MRI which showed I had fractured a vertebrae and had 3 lesions on my lower spine. This was the start of my active treatment.

But…[Read more]

Hope you get a long remision and start to enjoy life again. It's a long road.

Love
Tina

Enjoy your drinks, and have a good time, both of you

Tina

On a better note, after 2 cycles of CDT my pp level has dropped from 33 to 3. So hopefully 4 cycles will be enough.

Take care
Tina

The first time I had it, my GP gave me anti biotics which seemed to work.
But the next time, they had no effect.

Looks like it is another side effect.

Thanks
Tina

I agree about the mood swings. Tuesday and Wednesday will be douvet days i guess. But I am sleeping very well, due to the Thalidomide and anti sickness tablets at night. But my husband says I snore!!!!

Keep fighting,
Love
Tina