Hi Ali and you all,
I had a scare whilst still under Kings after my transplant so was not discharged from them till well after my 100 days, then my local hospital took me back and never mentioned any maintenance. So I continued four weekly bloods and assessments and Zometa till one day one of the trials nurses saw me in the waiting room and said " when did you last do a bench jones test?"the dreaded 24 hour urine test ! ages ago I said, well next thing I am called in and randomised to Revlimid and Zorinistat,After 6 weeks of taking it I was very ill , admitted to hosp through A&E with suspected heart attack. Excellant treatment and great many tests done and after 2 days there and no visit by the trials team and having shown the Dr in charge the paperwork of my drugs, he was happy it was side effect and sent me home. As I had been told I could stop the drugs at any time and just one week away from our christmas break in a hotel we made the decision to stop them all. I was up till starting the drugs feeling very well indeed, We saw the consultant in the new year and he agreed for me to just go back on the revlimid and see how I tollerated that alone,now he wants me to try the Zorinistat again but after my small holiday which was 6 weeks exactly after I saw him!! Now I am thinking like you all what shall I do?
It is bad enough having this myeloma but I find sometimes too much information is just as bad as not enough.
PS. my bloods have been steadily reducing since being on the revlimid but this is normal I understand.
Love Babs
Hi Sarah and Henry,
I was going to make same suggestion as Tom, both our local hospital chemotherapy team and hospice have counsellors, if you have not been to a hospice before you need to be referred by your GP and then assessed by the hospice.
I do not have a support group close to me but my hospice runs a drop in morning where I get to meet others, with very different conditions but we talk, laugh, read the paper and generally help each other, ie DLA,holiday insurance etc.Free tea,coffee,biscuits and cakes too!!! This also gives our carers some time for themselves and they also have their own days where they get to talk with other carers – I suspect they swop stories of how their lives have changed.
Good luck
Babs
Hi Billy,
Good news with the remission, it is what all the family want to hear and
good luck with the SCT, it is hard as you will be feeling the best you have for a long time, but as every one has said it is worth it.
Hi Peter,
this is interesting re your cough, I too have had a cough since just before my SCT, possibly from the first infusion of chemo prior to hospital admittance? I have asked if it can be related to my myeloma, but have been told not, but I still have this cough now and my chemo was February 2012 and SCT March 22nd 2012. When I last saw my consultant locally he sent me for an xray of my chest and now my GP has now got me on a course of antihistamines to see if it is perhaps alergy related. All I want is to stop this dam coughing!!!!!!!!
Take Care
Babs
Hi David,
I wish you a lovely tour and hope the weather is kind to you.
Love Babs. xx
Hi Jean,
Happy Birthday to Frank,
Love from Babs. xx
Hi Ann,
On diagnosis I had daily visits from the district nurses to do my clexane injections, they arranged for the local occupational therapists to come out to see me and they arranged for me to have on loan, toilet raisers, the bed guard, perching stools for the bathroom and kitchen, trolly on wheels,and a man came to put hand rails up the stairs,a grab rail to enable me to get into the bath, they also arranged for me to have a wheelchair. I remember at the time thinking how in just over 9 months my home looked like my late mums disabled flat when she was 85! And I was only 53!
But now all I have is the wheelchair , bed guard and the perching stool in the bathroom, every thing else which could be has been returned.I use the wheelchair on long walks and to go shopping .
I think the info days are a good idea, I missed the one near me last year and the year before as both were when I was not well enough to attend, but plan to attend this years.
Love Babs
Hi Ann,
It might be that you have been diagnosed at early stage and this is why chemo not yet started, can you not ring the team and ask? , we all remember questions we wish we had asked after leaving the consultants appointment, after all there is a lot to take in.
I must admit that I was so ill at diagnosis that I had no idea what I was taking, I just remember going to the hospital with my husband and they gave us a large carrier bag full of the drugs I was to take until my next hospital appointment, the chemo tablet I took every Friday, my husband and daughter went out and bought a white board and pen and wrote down all the tablets and when to take them, more computer literate people use a spread sheet but we are not that good :-). I do remember sitting in the arm chair , like a zombie, so drugged up and honestly thinking I would die I felt so ill! The pain was so bad I would not let anyone near me and every bump in the road made me scream, looking back other drivers must have been really cross as my poor husband drove so gingerly! 🙂
The good news is that I am now so much better and although the five months of having the initial 6 courses of chemo with all the effects of the combination of pills was not easy and very lonely ( if chemo is given introvenously at least you get time to meet other cancer sufferers.)all us Myeloma sufferers only get to meet other people when in for the Zometa infusion and to collect our pills,and this is only for a short time. That is why this site is so good, I only found it after about 7 months and when I was well enough to look at it, I had been told of it but was given so much info initially that it was overlooked.
I kept a full diary of my initial journey but have filed it away as not required any more, seems like a dream now.
I too remember just wanting to have a cuddle from my husband, but he was too frightened of hurting me, and remember the difficulty in even turning over in bed, unfortunately due to the damage this MM did to my spine – I am 3 inches shorter due to the collapse- I can now turn over but when I do it still hurts, but is bearable, I land on the bed with an almighty thud, not very ladylike, haven't slept on my stomach since before diagnosis and am reliant on a bed guard which I use to pull myself up with, but hey I am alive and determined to live my life to the full with this cancer.
The main problem now is that after all the treatment and SCT which I had March 2012, I am in full partial remission and look normal to others !. Only my full head of curly dark hair and my walking stick tell of my cancer, the cold weather plays havoc with the bones but hey the warmer weather is on its way.
Since joining this site and reading what others have managed since being diagnosed has helped me realize there is life after being diagnosed with myeloma.
Love Babs x
Hi Helen,
I've not been on here for few days due to getting over my chest infection and since Tuesday a frozen shoulder,seems so insignificant in comparison to your relapse, so sorry to read of this.
Lots of cyber hugs to you from me.
Love Babs
Hi Mavis,
Like Helen I too have got insurance through world first, a years cover also which is brilliant, you do need to ring them but they know all about myeloma which others dont seem to!
Good luck
Love Babs
Hi Ann,
Like all before welcome to our club to which we all wish we never had to join, I was diagnosed by my GP which a consultant at Kings told me was very unusual as most GP's only have one myeloma patient in their lifetime as GP's,but luckily for me mine was brilliant, I started with back pain in November 2010 which I knew was not "NORMAL BACKPAIN", I also had loads of other problems which were put down to my age and being a woman aged 52!!!!
I had a fractured T11 vertabrea whilst in bed in April 2011 which both my husband and I heard go "crack" then I think the whole world must have heard me scream with pain!!!
I was actually diagnosed on 3rd July 2011, by then I was just so happy to know they knew what was wrong with me I did not take in the word cancer!
I like you slept upright in a chair in the front room for several months and I have to admit spent many hours in tears asking why I had to have such a painfull cancer!
I was on such high pain killers but saw a brilliant pain specialist who told me I must try and tollerate the pain and get the levels of medication down as the pain will only worsen and if I am already on the top amount I will have no where to go!
Then I was offered radiation to which I was told could offer 3 out comes, no help at all with pain, a little pain relief or total pain relief ! well I decided I would give it a try as AT THIS TIME I JUST WANTED TO BE ABLE TO GET UPSTAIRS TO BED! I was one of the lucky ones and the treatment took my pain away completetly, when I went back to see the specialist who referred me for this his mouth dropped open – I kid you not – when I walked in to see him – he said I was unrecognisable as the previously stooped over and in tremendous pain patient he first saw and remembered. So if you are given this chance I say take it.
I still suffer pain on walking especially in the cold weather but can manage this pain with paracetamols! They cannot guarantee how long the raditherapy will last, I just thank the nhs every day that I am no longer relient on strong painkillers.
I first moved up one flight of stairs to bed and used to stand at the bottom of the stairs to our loft bedroom wistfully thinking will I ever manage to sleep up there again, well today I sleep up there and have adjusted to my new way of life and have found this site so usefull in making me see I have a furture in which I aim to do as much as I can and make the most of it.
I wish you the best with your journey, you will find the people on here so friendly and helpfull, thank goodness for myekoma uk.
Love Babs
Hi Phil,
I used to come out in very dry blotches on my face which were very red and sore from the outset of starting on Revlimid and Vorinastat, then I had bad lung pains which were so bad I was admitted into hosp through A&E but all checked out with my health so we put it down to the pills, as it was only six weeks after my starting on the trial and I was feeling very unwell,also we were booked to go away for Christmas to a hotel with our daughter and daughter in law,we made decision to stop the pills and speak to the team after the Christmas break.(I would have rang them if it had not been the Christmas break)
After the break we spoke to the team, saw the consultant who said they could not tell which of the drugs was making me so unwell but asked would I consider going back on the Revlimid, the tried and tested maintenance drug, this we agreed to and I have been back on it since with little side effects, the odd one is cramp in my little toes on my left foot, very painful.
I saw the consultant last Friday, he wants me to try the Vorinastat again, as we have holiday booked in six weeks time he has agreed we should start after our return – SO WATCH THIS SPACE –
Love Babs
HiTom,
You and me both, I too have a dreaded chest infection-n who gave me mine I too want to know!
We saw consultant on Friday morning and I said I had had awful cough for months now which was deffinately getting much worse, he sent me off for chest x ray, we then travelled on our way to the hotel for our weekend break away.
Cough just got worse – we had forgotten to pack the phone charger so only one phone – not good as our mobiles have become our life line between each other – thermometer and box of anti biotics!!!! Not good. I gradually got worse and by Sunday was just wanting to get home, My hubby said my chest sounded like he imagined the death rattle sounds!!! Not good so once home he got me appt with Dr and yes I have the dreaded chest infection so I am too on anti bioitics!!!! why cant we MM sufferers just have a good old cold!
I hope you are better soon, I know what you mean about time in bed – I don't have a onesie to lounge in though!:-) these infections just completly wipe us out don't they!
I wish all on here with chest infections quick recoveries.
Love Babs
Hi Debs,
I had my SCT 22nd March 2012,am too taking 10 mg of Revlimid and asprin only,said to be in "full partial remission", I too often have flushed cheeks, mainly noticed after I have eaten,but can be at other times too, but that could be more noticable due to the people sitting at the table with me.
Like you the SCT took me through the menopause so this could be one of the side effects.
I am seeing my consultant this friday and I will raise this with him, it does seem a silly thing but the flushing I get does often bring comments from kind thinking people, basically am I ok cause I look so flushed!!!!!
Love Babs
Hi Nikki,
In answer to your question re how your dad is now feeling during his SCT, this is quite normal for all of us who have undergone this procedure. The hospital team will monitor his temperature for early signs of infection and will act upon any immeadiately, the chemo given prior to cells being put back in is so strong it wipes the patient out, mostly the spouses and family of the transplant patients visit to find they spend long times watching over the sleeping patient, he will also have no energy.
He will be having daily blood tests too and may need extra
blood,platelets, fluids etc, all of this is also quite usual.
I had my SCT on Kings which is only half an hour from my eldest daughters home, she came to see me once then caught a cold so was not able to visit me again, even on my birthday which was 3 days after my transplant.
Ask away and if we can we will help you and your family through this, and of course you have the nurses who you can ring on here too.
Babs
Hi Eve,
I had Reiki for many years before I was where I am now, I also had 6 sessions of it at K&c after diagnosis where it is paid for by the cancer care club. I don't know if you are aware but they do Reiki and so very much more at the hospices for both cancer sufferers and carers, I always thought hospices were only for end of life care but one day I noticed the hospice at Canterbury was offering free hand massages to cancer patients at the hospital, always one to like to take advantage of a freebee, I went along and learnt such a lot about the hospice system.
Love Babs
