Hi Gary
Your sister seems to be going through the mill right now with the treatment. I can relate to the blurred vision and the headaches and the paranoia as I had this when taking the steroids (was also on the CTD regime. The confusion I am not so sure about although I do remember a little bit of a fog which I put down to the thalidomide. I do hope she feels better soon and perhaps if she had a better consultant they could discuss reducing the dose?
Has she or you tried ringing the Myeloma UK nurse to discuss these side effects? I have found them to be very helpful. My other question is has your sister been assigned a specialist nurse at the hospital as they can sometimes be more helpful than the doctors.
With regard to the stem cell transplant, my understanding and experience is that this procedure takes place when the initial cycles of treatment has reduced the abnormal cells to a reasonably low level. If your sister's bone marrow doesnt show any abnormalities then I dont know how the consultant will assess this, maybe through the blood tests which you mention are going in the right direction. It would certainly be unusual to have a SCT after one cycle of treatment and I can see why you are both confused.
I think that you are not going to get anywhere with this consultant so perhaps it would be best to see a different consultant. I dont know what hospital your sister is at but there must be another more sensitive consultant she could see?
Anyway I hope you can work something out.
Regards
Wendy
Hi All
thanks for your replies, yes me too I am hoping that I will wake up one day and wont be itchy anymore but in the meantime I will try your suggestions Shirley for my eyes. I think that they are dry more than anything as when I wake up in the morning, I can hardly open them! So hope the vistotears work.
Best Wishes
Wendy
Hi Eve,
I had two cycles of velcade at the Manchester Royal Infirmary last summer.
I was told to come in for 9am as the earlier I come the earlier they could order the velcade but I think the reality is that they waited for everyone who was due to have velcade to arrive before they ordered it. When I arrived the nurses would take blood but I cant remember if this was everytime and then go through an assessment questionaire asking about peripheral neuropathy, sickness etc. Then they would run the questionaire by a doctor and if all ok the go ahead would be given to order the velcade. I didnt have to see the consultant. Then it would be a question of waiting for the pharmacy to make it up so if I got my infustion by 3pm that would be about average although sometimes it was getting on to 5pm and exceptionally by about 1.30pm. I was always exhausted by the time I left the day unit despite lying on the bed and doing very little!
Wendy
Helen
I just got an world wide multi trip annual policy (excluding the USA, Caribbean and Canada) with World First for £136 which I thought was pretty good. It includes Myeloma and there is the usual questions about whether and when you had the transplant. At the time I was about 3 mths post transplant. You can apply online too. However I am not on any maintenance therapy such as Revlimid so whether that makes a difference I dont know. Have been to Alicante for long weekend since taking out policy and am planning trips to Swedish Lapland for dog sledding, skiing and northern lights spotting and Tenerife (to thaw out!)
Wendy
thats good news Ian and long may you continue to be disease free!
Re chromosomal abnormalities it doesnt appear to be the case that many people are told about these or tested for these. In fact I dont know how you are tested whether through blood tests or bone marrow tests.
I have been told there is a matched potential donor in Portugal. As I have been there twice this year on holiday I consider this to be a good omen!
Were you ever told that having the mini allo could give you a chance of a cure? Or has anyone been told this? My consultant reluctant to say this as the evidence isnt there.
Wendy
Hi all
I thought I would update you on my mini allo research and decision. I had decided to wait and see what sort of response I had to the auto transplant and if I had complete remission or very good partial remission would settle for that and hope for a nice long remission period. So I found out on Friday that my bone marrow was less than 5% sbnormal cells and my light chains were within normal range and the consultant said I had a very good partial response. So that was great news wasnt it?? She also said that there is a correlation between having complete remission or very good partial remission and the length of remission so so far so good.
But then she flipped through my file and looked at a cytogenic report and said that I had chromosomal abnormalities that indicated that my remission may not last that long and so my delight at the good news was soon extinguished by the bad news. This chromosomal abnormality had never been mentioned to me before so it came as a bit of a shock. She also explained although I kind of knew this that each transplant would give about half as much remission as the previous one and at my age (50) the aim was to prolong remission at first remission as long as possible and the mini allo would give me more mileage (my words not hers).
Looking at the research (and there isnt loads) I came to the conclusion that there is there is slightly more evidence for than against that a tandem auto/mini allo can lengthen remission but that the longest study is only over a 5 year period. However the risk of chronic graft versus host decision may outweigh the advantages in my view.
Having said that I have decided to have it and the donor matching process is underway as my siblings are not compatible. I need to have it done by the end of February as that will be 6 mths after my auto.
So I think I might be the first on this site to have a tandem/mini allo as the first transplant procedure rather than on relapse. Has anyone else any chromosomal abnormalities that they have been told about and told that they will affect their response to treatment/length of remission??
Any comments would be appreciated and I wish all a very happy Christmas and new year!
Wendy
Hi Belles
yes I had a stem cell transplant (my own cells) at the beginning of September on ward 44. The hospital stay was just over 2 weeks and not as bsd as I thought it was going to be and my recovery has been fairly smooth as well so far. Your mum sounds like a fighter in spite of all the complications and I really hope things do get sorted out as soon as possible and she can go home. How do you/your Mum find the nursing staff? I found them to be really good and helpful.
All the best to your Mum
Wendy
ps I think there might be a member of staff called Wendy!
Hi Belles
I think it must have been another Wendy. I was on ward 44 MRI but that was about two months ago. How is your Mum doing, I have read your posts but didnt realise that she was being treated at the MRI.
Regards
Wendy
Just to add to the above, Lyrica is pregablin which I know is quite commonly prescribed for PN.
Hi Ian
pleased to hear the good results re your transplant, what does the t cells being 95% mean? It sounds like you are doing really well so hope it continues that way.
I have decided to wait and see about having the mini allo till I know the outcome of my bone marrow biopsy in December.
all the best
Wendy
I have got this too, itchy face,scalp,neck and am also a bit spotty and I am about 9 weeks post transplant. Interesting that it could be GVHD even from your own cells back. I take an anti histamine each day and use E45 and try not to let my skin dry out. Otherwise I dont think there is much one can do except try not to itch!
And I do get dry itchy eyes too.
What bothers me more is that I have started getting chronic peripheral neuropathy which my consultant says is a side effect of the velcade although my last dose was at the beginning of June and I didnt get it much at the time. Has anyone else developed PN so long after treatment?
Hi Kay,
I am at the same stage as you, about 7 weeks post transplant and like you I got off relatively lightly from some of the side effects of the high dose chemo and was out in two weeks and 1 day. I also get very achy bones expecially after walking and sometimes I can hardly walk up the stairs! Also get very tired especially in the afternoon. I get pins and needles in my hands and feet and am told by my doctor this is due to the velcade I was on prior to the transplant but that it will pass. I think the achy bones are defitinitely due to the high dose chemo and I do try and walk at least a mile everyday despite the aches. It may feel worse not better because you are using your muscles more than you were when you were in hospital and when you came out. I think if you dont feel like doing anything dont, and if your body is tired then rest it.
Take care
Wendy
Hi Jim
sorry that you had to join the group but hopefully you will find the forum very helpful. I know I have. I was diagnosed last December when 49 and was previously fit and healthy and it was a complete shock to me and I am still coming to terms with it.
I see you are going to be treated by Christies so you must live in Manchester like me. I am being treated at the MRI. I was offered the myeloma xi trial on diagnosis and decided fairly quickly that I wanted to take part. I thought there would be better monitoring and the chance to get revlimid as a newly diagnosed patient. Unfortunately I was randomised to thalidomite which didnt agree with me so I had to come off the trial after 1.5 cycles.
I havent really noticed any difference in my care since coming off the trial although there are constaints re choice of treatments etc but that applies equally to the trial as it depends what you are allocated by the computer. If I had the choice I would still prefer to be on the trial.
Good luck with your treatment whatever you decide.
Wendy
Hi Shirley
Am so glad you are doing well post allo transplant and are in complete remission. What sort of graft v host problems are you having? Did you have the full allo ie high dose chemo and then the transplant of cells from your sister? What did your consultant say about the risks and possible remission period?
Take care
Wendy
Hi all
Thanks for all your replies and suggestions. I think I will ask for a second opinion, Debs can you suggest anyone in particular at the Royal Marsden? You may not have been offered it because you are still on the Myeloma X1 trial and I came off it due to being intolerant to Thalidomide although my consultant said she would have taken me off the trial in order to offer the mini allo. I will also post on the under 50's forum and go on the USA sites some of you have suggested.
I am going to take my time to make this decision. Shirley I wish I could be like you and never hesitated but even before myeloma I was never good at making decisions. I have just got back from a 3 day break in the peak district enjoying the last of the sunshine. I did a couple of 4 to 5 mile walks and feeling remarkably well 5 weeks post transplant. Not quite as tired but still take a rest in the afternoon. I am also feeling in better spirits (apart from when I think about the mini allo!)
Will keep you posted on what I decide.
Wendy
