Hi Helen.
Thank you for advice on taking revlimid in the evening,I may try changing the time and see if it suits me better,
I too found wearing the wig made me itch, I only got one because my daughter was getting married on 13th July and I wanted to wear a hat which didn't fit my bald head, however half way through the evening I took the wig off and like you had compliments saying how the short style actually suited me! I am now sporting a short very curly head of hair and the longer it grows the curlier it gets!
Also since starting the maintenance I have also recently had two nosebleeds, one last thursday and again tonight!
Hi Ali,
Tell your mum the hair regrows quite quickly, it just seems to be forever as she will be looking at it every day and it is strange to have lost your hair !!
I too am apprehensive about doing the maintenance as was fairly well before hand, (well before the toncilitus and candida infection any way) but I felt this way before my SCT as was feeling very well after the 6 cycles of chemo and it is terrifying to know I would be so ill but I just looked to the future and hopefully a long remission.
Love Babs
Hi Mike,
I like you had been unwell with numerous infections and also have bladder problems,My husband had also been teasing me saying I had shrunk in height, I had noticed a change in my body over the last couple of years prior to getting really constant back pain in november 2010, I then fractured a rib just getting out of bed in April 2011 and then became very ill with all sorts of problems before being eventually diagnosed with MM July 2011,was told the myeloma had been eating my bones and actually I have shrunk due to the damage to my back bone,it was actually a relief to be told what was wrong with me! sounds strange I know but I have actually met another fellow sufferer who said she felt exactly the same relief as me.
I have had 6 courses of chemo and had my SCT March 2012, it is one hell of a condition to live with, and I get really frustrated and angry even as cannot walk very far now or ride my bike or go shopping,(some people are able to work with this condition )but am very glad to have come through all the treatment and am now planning on living as long as I can, I take every one who has lived for many years with Myeloma as my yard stick to my chances of living a long time with this condition.
This is a good site where you will get lots of advice and support.
All the best
Babs.
Hi Ali,
As I said only just started on Saturday but Monday, Tuesday and Wednesday I had really itchy head, drove me to distraction and thankfully now stopped, I have also had one bout of the dreaded constipation followed by tremendous stomach ache then very loose motion all in about two hours, (sorry for be so graphic but don't know how else to tell you.)
Having read the paper work the tablets can cause these, I am also finding it really difficult to drink the suggested 8 glasses of water a day, I have resorted to warm water which is easier in this cold weather than cold.
I have also found actually taking the Revlimid capsules have been making me reach so am not enjoying breakfast time but hopefully this is just me worrying about taking them and I will soon get over it.
Has your mum started her course yet and if so how is she doing?
Love Babs.
Hi Ali,
I, like your mum have been randomised to Revlimid and Vorinostat but I also take daily aspirin, I started mine on Saturday 17th November.
I had my SCT on 22nd March this year and although I still have 2 to 3 % cancer cells in my bone marrow, which are currently dormant so I am said to be in "full partial remission",
My hair has grown back quite a lot and is extreemly curly! Two shades lighter and looks like I have had it highlighted, the things chemo can do to us!
I had been infection free till I got toncilitus on 11th October for which I was given antibiotics which cleared it up, unfortunatly the antibiotics then left me feeling very unwell for the next two weeks,my appetie dropped away and I lost 9 lbs in weight. ( as we had been advised we rang our local hospital ward but as I had normal temperature they said to ring my GP, he just said due to my cancer we knew it would take longer for me to get over infections, I then saw another GP at my surgery who gave me good examination and when he felt my stomach I yelled with the discomfort, he advised me to take lopramazole, this I did but there was no improvement in my condition, after two weeks my husband in desperation rang the trials team and spoke to their senior nurse,I was going in for my 4 weekly Zometa so she said while I was there she would get their Dr to see me, between the Dr and this senior nurse they diagnosed cadidia in my stomach and throat and I was given two weeks supply of Fluconazole). I am now almost back to my previously good health but am amazed how quickly my stamia has fallen away.
Good news on your mums progress.
Babs
Hi Eve,
I have been reading this site for several months and you and Slim have been a great inspiration to me, our youngest daughter left the uk in August 2010 to travel Australia for a year, loved it so much she qualified for a second year, met the love of her life and has only yesterday has been granted a visa to stay with him, we brought her home for 5 weeks in July 2011 to tell her my diagnosis, then she came home this year for 8 weeks to be bridesmaid at her sisters civil partnership but I dearly want to go out to meet her new Australian family and see where she is to live her life, I had thought this may not be possible till I found this site and caught up with you and others who travel this far, we hope to go next year and have already checked out insurance!
I look forward to reading about your and Slim's travels.
Babs.
Hi Jean,
I can only say that I wish I had found this site before my SCT as the lonliness in hospital and not having anyone to compare with made it quite hard, since finding this site I have found great comfort in finding my experience very similar to others who are sharing their journey through the process on here.
I worked with the back pain from November till April 2011 when I fractured my T11 rib whilst in bed,( it was a very scary moment for both my husband and I as we both heard it crack and I screamed with the tremendous pain that followed, )we had booked two weeks holiday in London to go up to experience the royal wedding but I was so incapacitated that I only managed a short walk around the site and we ended up spending the whole two weeks on site and watched the wedding on the telly! I was in so much pain for the next six weeks that my Dr signed me off work, I was never to return and eventually was given medical retirement from work at the end of December 2011.
Unfortunately I have collapsed bones and the myeloma had done its damage prior to me knowing I had it, luckily I was offered one large dose of radiotherapy to hopefully ease my constant back pain and was lucky to have this take the pain away completely for the moment.
I had previously like many others on here been quite fit and healthy prior to this, We have always enjoyed cycling and had done many of the converted old railway cycle ways around the country and also enjoyed walking, I used to walk or cycle to work but in the latter days was so incapacitated that work gave me a car parking space and I had to drive in and at my worst I actually fell asleep with a client sitting in front of me at work!. Now I can barely walk any distance and can only stand for short periods before my back aches.Shopping, cooking and housework have become a no go zone for me!
I am on the trials like many others on here and today go to my local hospital Canterbury to collect my tablets to start the maintenance trial myeloma XI, I have been randomised to take Zolinza(vorinostat) and Revlimid (lenalidomide) with asprin to guard against DVT's.
My apologies for rambling on but hope my story will give some hope to others embarking on the myeloma journey.
Jean my STC was successful and was at Kings on Denmark Hill and I am said to be in full partial remission which is the best I can be, I was in for 5 weeks and 1 day,due to my having an infection in my hickman line,( I had in 7 weeks two hickman lines and a picc line inserted but that is another story for another time! )
I wish you and Frank a smooth journey through the STC , this site will certainly help.
Love Babs
