TinaP started the topic Relapse? TinaP in the forum General 8 years, 5 months ago
I have been in remission for just over 3yrs. My last 2 blood tests showed up
that my PP’s were visible and rising all be it slowley.
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]
TinaP started the topic Relapsed and now has a loss of p53. Myeloma active and aggresive spread in the forum General 9 years, 3 months ago
I am sending this on behalf of a friend. I myself have MM and am in my 3rd year of remission.
She had an easy ride with SCT and was only in hospital for 12 days.
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]
TinaP replied to the topic Lenalidomide & Maintenance in the forum Related conditions 9 years, 9 months ago
I have been on Revlimid for 18 cycles as maintenance. 3 weeks taking 1 tablet at
night, then 1 week with no tablet.
Then after a blood test,I go and see my haematologist for the results.
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]
TinaP started the topic Weight Problems after CDT in the forum General 9 years, 11 months ago
I know this is a trivial problem when you look at the world of Myeloma as a whole,
but I have gained just over 3stones. I have not got much of an appetite, so why is
the weight not going?
Typical Day: Breakfast bowl of cereal with a few sunflower seeds mixed in.
Lunch: Toasted cheese sandwich, followed by yogurt and fresh fruit…[Read more]
TinaP started the topic Still Weak in the forum General 10 years ago
I had my SCT on Oct.11 2012.
I have been in remission for almost 18 months.
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.
TinaP replied to the topic WOW guess who got a "paraprotein not detected"? in the forum General 10 years, 2 months ago
I am so pleased for you.Its a great feeling to be told that
the PPs were undetectable. Hope it lasts for a very long time.
Love Tina
TinaP started the topic Pneumonia – but better now! in the forum General 10 years, 3 months ago
Just before Xmas I had tickly cough. Thought no more about it and carried on as normal. Then the day after Boxing Day, I went upstairs and was so out of breath that I had to lie on the bed till I got my breath back.
So the next morning I went to see my doctor. He listened to my chest and back. Then gave me a note to
take to A&E straight…[Read more]
TinaP replied to the topic Loss of appetite in the forum Side-effects 11 years, 1 month ago
Hi David,
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
TinaP started the topic Loss of appetite. in the forum Side-effects 11 years, 1 month ago
Hi everybody,
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]
TinaP replied to the topic Curly Hair after SCT. in the forum Side-effects 11 years, 1 month ago
Mine has grown back much darker (I was blonde) with grey in it!!
TinaP replied to the topic Question…..maintenance treatment in the forum General 11 years, 1 month ago
Hi.
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
TinaP started the topic Remission. in the forum General 11 years, 2 months ago
Hi all,
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]
TinaP replied to the topic Remission in the forum Treatment 11 years, 3 months ago
Hi Mavis,
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
TinaP replied to the topic Remission in the forum Treatment 11 years, 3 months ago
Hi Mavis,
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]
TinaP replied to the topic Remission in the forum Treatment 11 years, 3 months ago
Hi.
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]
TinaP replied to the topic Remission in the forum Treatment 11 years, 3 months ago
Has anyone suffered from itchy skin.
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
TinaP replied to the topic Remission in the forum Treatment 11 years, 3 months ago
Hi Helen,
Did you have any side effects from the Revlimid?
I start taking it tonight.
Love
Tina
TinaP started the topic Remission. in the forum Treatment 11 years, 3 months ago
Hi all
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]
TinaP replied to the topic Dry tongue and mouth in the forum Side-effects 11 years, 3 months ago
Thanks Sue.
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
TinaP started the topic Dry tongue and mouth. in the forum Side-effects 11 years, 3 months ago
Hi,
I am 13 weeks post SCT, but I am still suffering with a dry mouth and tongue. I keep a glass of water to hand, as when I am very dry, my husband has difficulty undestanding me!
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]
