[TibbyParticipant]

Hi every one. I went to my GP with a stiff hip. Next thing I know blood tests are being done, biopsy is booked and a full body X ray for next week.!

My blood test showed I am anemic and my protein level should be 38 and is 101.

I feel a bit tired and the hip hurts a little when I stand on one leg to put cloths on etc, but other than that I feel o.k.

I have the bone marrow biopsy booked and X ray next week. Doc has said he is pretty positive it is Myeloma. He has given me Myeloma info to read which scared me. He gave me treatment options for chemo to take away and read, which I thought was a bit premature and a nurse I spoke to in his department told me when I go next week she will see what house modifications I may need!!! I am still working part time and as I said feel tired but that is all. Why would I need aids around my house? Can any one shed any light on that? Is this for the chemo stage, I just do not understand.

The hospital are doing a trial of chemo drugs at the moment and my doctor gave me the info to take away and read to see if I would like to go on that , which is Revlimid, Cyclophosphamide, Dexamethasone. or the standard which is Cyclophosphamide, Thalidomide, and Dexamethasone.

Has any one had the same combination with sucess and can any one give me some help as to what direction I should take. My life is total blurr at the moment.

I am 52 years old by the way.

Also has any one tried Tumeric at all. I have seen it can help with pain and may help kill cancer cells? Thank you so much. Bev X

[petesilverParticipant]

hello Bev
First thing is to calm down 🙂 get all your tests done, then speak to your consultant, who I am sure will prescribe the best way forward, you have to put your trust in some one. I was diagnosed on 2003 had SCT and other chemo and still here and at the moment feeling fairly well.
I hope all goes well with your tests,the only problem with Myeloma is everybody is different what treatment suits one does no good for others.
All the best
Peter

[charisma4Participant]

Hi Bev,

I can feel your fear, and I remember feeling exactly the same as you, pre diagnosis.My MM was discovered through a cholestral test,which,would you believe, I had requested !!

I am 63 on the trial drug,and have been a bit sicky on it, but other than that not too bad.

Please be guided by the lovely people on this site, they are a great bunch, and will always try to give an answer to your question.Their support is immeasurable.

I am not going to say 'welcome to the club you never wanted join' yet Bev – wait til you have some definites.

My doc hadn't got a clue about MM, so be grateful that yours is on the ball.

Hang on in there.

Love, Lesley xx

[TibbyParticipant]

Hi Peter, thank you so much for your advice. It is so great to hear you pulled through it all and are living a good life.
You don t know what this means to me.

I am touched that you took time to reply.

Many Thanks,
Bev. X

[TibbyParticipant]

Hi Lesley, thank you so much for your reply. I think the fact it just suddenly arrives is the worst bit. We are unprepared.

Thank you for your kind words and for taking time to reply.

Many Thanks,
Bev X

[PerkymiteParticipant]

Welcome Bev, Peter has got it right and has given good sound advice. I do not know your circumstances but Disability Aids is just a little premature I would have thought :-S .

Kindest regards – vasbyte

David

[tonyfParticipant]

Hi Bev, stop, don't panic.( easier said than done!)
Let the specialists do there tests, get the results and then take their advice and treatments.
Like David (Perkymite) says disability aids is a little premature.
Folk, including me have myeloma, it is a very strange cancer, and shows itself in all sorts of ways.
All of us have gone or are going through all kinds of treatments, all you need to do is write your worries / problems / issues on this site and someone has been there, done that, come out the other side and are willing to share, help and offer all kinds of support . We are there with you!
As far as your treatment is concerned, yes done that, had a stem cell transplant, come out the other side and am in remission.
Please, please don't let it get you down, think positively, any worries share it with us here.
Yes okay, worry,but remember you are not alone?
Hey, chin up.
Tony F

[tomParticipant]

Hi Bev
A Warm welcome to you 😀 Now take a seat and have a cuppa 😎
Now you know not to have fear :-S and the MM road to remission is a "Doable", Trust me I was a Forklift Driver Lol.

I was told in 09 I had it, done CDT then SCT all in 2009 I sit here now (age 58 Just) in remission and drug free am very pleased to tell you 😎 as for the disability aids I was asked (and I have had no bone pain) if I wanted a seat in shower and or a hand rail for the bath ?? I declined both as I was Ok getting in and about?.

Keep well and rest when your body tells you.

Love Tom Onwards and Upwards xxx

[CarolsymonsParticipant]

Hi Bev I understand your feelings. I am also newly diagnosed on week 6 of CTD (cyclophosphamide, dexamethasone, and thalidomide) drugs and have asked occupational therapy about hand rails for shower. I don't have bone problems apart from the healing collarbone tumour but find the drugs have made me shaky and often my legs feel like they don't belong to me. Of the 21 day cycle of drug treatment 10 days are manageable with the other 11 being more difficult with chemo sickness and steroid withdrawal side effects. Everyone is different but the treatment certainly is not a walk in the park. As I have said elsewhere, I have gone from believing I was healthy to hell, in a few short weeks! But there is no choice is there it is take the drugs or ………?

Carol

[VickiParticipant]

Hi bev,

My partner Colin was diagnosed in October 2011 and like you we felt like we'd been hit by a steam train. What he had a bad back….no change there! Then we were like you into a roller coaster of X-rays bloods test and bone marrow biopsy! Then bang…it was mm and naturally I read every web site going before I found this one and was devastated!…for him for me for us 🙁 oh and I forgot he had a fractured vertebrae in back and had radiotherapy!

Then Colin was started on myeloma x1 trial taking tablets of revlimid, cyclophos and dexamethasone. His light chains went down from 31000 to 17000 . His pp was 17. After seven cycles his pp was non detectable and his light chains 750. He had an sct (stem cell transpplant) in oct /nov 2012 and it is successful!.

It wasn't easy, it is a worry but it can be done. Do you have support? Make use of it, seek a councillor and talk to anyone who will listen :-). You can do it. It's a hard road, but you can do it with support, good medical team and this forum to let off steam 🙂

We went out for a meal twice this week…..so there is Normal too. Also Colin went back to work full time this last two weeks. Very tired but did it. So can you 🙂

Vicki and Colin x

[TibbyParticipant]

Thank you so much for your response.

Bev. X

[TibbyParticipant]

Hi Tony, thank you for your words. You are an inspiration, as I am sure every one on this site is.
I am so pleased you are well and it has given me hope.

Bev X

[TibbyParticipant]

Hi Tom, thank you for your wonderful reply.
I am so pleased to hear how people are coming out the other side and it has made me feel so much better.
That cup of tea now tastes good!

Bev X

[TibbyParticipant]

Hi Vicky and Colin, it sounds like it has been a rough road for you both.
I am so lucky to have a caring understanding husband I can talk and cry to.

I am so glad things are coming good for you.
Thank you for your reply.

Bev X

[mhnevillParticipant]

Hi Bob

Welcome from me too. Sorry you have had to join us.

People say that if you are on a trial you get very carefully monitored even if you are not on the novel agent,so it is worth talking the opportunity if offered it. I am sure you will feel much better when you see those numbers come down.

I didn't have a SCT, but am in remission after six lots of CDT. Apart from a nasty taste and swollen legs didn't find the chemo drugs too bad. Watch out though for infections. I did get shingles.

All best wishes

Mavis

[Author]

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