Great News, so pleased for you both and so promising for everyone just embarking on this mm journey.
Love
Babs
Hi Tom,
Really good to read your post, it has been for me very reassuring to hear all the positive posts just like yours on here.
I hope it helps many others too who find themselves joining us on this journey.
Love
Babs
Hi Vicky and Colin,
I was randomised to both Revlimid and Vorinostat and took them for 1 and half months but was very unwell, even hospitalised with chest pains so I stopped taking them both, after seeing my local consultant he wanted me to remain on the Revlimid but had to check first if I could change after being randomised, he must have been given the ok because now I am currently only taking the Revlimid.
I am currently doing well and my last blood tests were at what my London consultant said was near NORMAL! HB 13.6, neutraphils 6.1 and platelets 218 and so I have been given my next appt with them for Feb 2014!!!
Ali,
Interesting you say about your mums childhood imunisations, I was told I would need these again then after SCT I asked and was told not needed!! Did your mum use her own cells or donor cells?
It never fails to amaze me how differently we can be advised and even how our myeloma is checked by different hospitals.
Also I too suffered itchy red spots on my face which were very sore and looked awful, I have not had them since being just on the revlimid.
Love to you all
Babs
(currently suffering horrible head cold which I am hoping to fight off myself with out need of antibiotics – week 2 now and feeling better so fingers crossed )
Hi Ali,
Yes sorry not kept in touch since before Christmas, I was being very unwell to such an extent my hubby said I was as bad as before diagnosis, I missed all pre christmas meets with friends and was so fed up and as we had hotel booked for three days over christmas was worried I would be ill the whole time so Thursday before I just stopped the tablets – had good time and was well and then phoned the nurses in the new year.Not sure this was the correct thing to do and am not recomending it!
My consultant said it must have been the new medication but wants me to continue with the revlimid which I am currently now taking , day 13 today, so far seems ok, fingers crossed.
Good to hear your mum feeling ok, I didnt have any itching or pains, I think the side effects of the tablets aggrevated other health problems I have which are not myeloma related.
Best wishes to you and your mum,
Love Babs
xx
Hi Tom,
At the moment I am feeling the best I have since prior to diagnosis, planning on keeping this way as long as I can too.
I can drive short distances but need to be careful as if back starts to ache I can have problems with driving, so my husband has said he will come with me and drive me to the next meeting, it is not until March and is held bi- monthly.
I also went on the bus last week, not as comfortable as driving so shook my back about a little but I have mastered how to deal with it now. luckily I was given a strong course of Radiotheraphy in 2011 which took my severe back pain away (also I hope this remains this way for as long as it can,) currently I only take paracetamol when aching is bad which is not too often now.
Love Babs x
Hi Tom,
I currently go to my local hospital every 4 weeks for Zometa and have just started to go in for bloods and assessments every four weeks then two days later to collect my pills, until now I have yet to meet any one else there with myeloma! My nearest myeloma support group is at tunbridge wells which is about 35 to 40 miles away from my home.
This is why I find this site so helpful.
Thanking you all for this.
Babs
Hi Jenny,
I too have light chain myeloma, diagnosed July 2011, 6 courses of RCD from July to November and SCT March 2012, currently in full partial remission!
I was randomised to take both revlimid and Zolinza but was very ill and so stopped after 6 weeks and am now currently on day 13 of just taking revlimid as part of the maintenance regime.
Love Babs
Hi Megan and Phil,
I have just caught up with your thread here, I had my SCT at Kings in March this year and your daily update is bringing it all back to me.
As previously said all hospitals seems to do it a little differently, I had not found this site when I had mine but now I am on here I find it very helpful,I am finding how you and Phil are coping with the journey a reminder of my own.
I did not suffer sickness and took my anti sickness pills religiously but my diarheoa was horrible,(the nurses were extreemly helpful though.)How I wish I had known of taking ice when having the methalan as I had terrible mouth and throat but the nurses gave me orimorph before each meal which was how I managed to eat.
Agree with Phil and Tom the IV stand never seemed to leave my side and hated having to drag it every where,no-where had I read how difficult it is to sleep with one either!!!perhaps only me !!it will leave soon though as the end of the SCT journey comes.
The thing I had problems with was one tablet given to me 3 times a day used to very difficult to swallow so I hated having to take it and used to save it to the end, on being sent home at the end of my SCT journey I read on the box that these pills were to be dissolved in water then taken!!!! Explaining why they had been so difficult to swallow !:-)
I seem to remember that the first 14 days were said to be the worst,so Phil is nearly there.
My husband gave up work to care for me so cannot imagine how you must be coping on returning to work, I have read many comments from carers on here and it is possibly more difficult for you all than us patients!Take care and rest all you can.
The hair loss is hard to deal with,I thought I was ok with it but lost it at some point but again the staff were very good and sat with me while I cried over my loss !! (Think it is cabin fever too as the isolation does get to you, I was by the end of my time in Kings on very good speaking terms with the cleaners, food attendants and even the bin collectors!!!) LOL
Babs. xx
Hi Ali, Graham and Tom,
Yes I too had anti sickness pills with all my CTD and SCT which I took religiously as hate being sick and they helped no end, I did have some left over from earlier this year and still in date so tried to take one but nausea came on too fast!
As for having novovirus, I looked it up on the web and concluded that I would be much more ill than I was,(although the clinical trials nurse said you can get it with just sickness ),after each bout of sickness I was able to sleep and just woke up to be ill then back to sleep, no normal after sickness problems, no sweating or fever, but just to be safe and sure I have been housebound and very aware of my handwashing etc,bleaching like mad too.
Just taken my asprin tonight so we will just wait and see!.
Love Babs x
Hi Ali and Graham,
Day 1 Saturday of 2nd course ,took the capsules in the evening and about 3 hours later was very sick, came on very suddenly! sick every hour through the night except 5 am, last time was 6 am, weak all day Sunday and took capsules after dinner in the evening, about 3 hours later was sick again ! only the once this time thankfully !
Monday morning rang the trials nurse who suspects novovirus! told me to miss tonights capsules and take them again tomorrow as usual and see what happens!
Did your mum Ali or your self Graham get anti sickness tablets issued as part of your trial, my nurse asked me which I had been given and was surprised when I said I had not been given any!
Love Babs x
Hi Sue,
I was diagnosed July 2011 and had SCT March 2012,
My husband gave up work to become my full time carer last September, our life has been turned upside down, at one time I hardly left the house except to attend hospital, was on so much Oxy Contin and Oxy Norm I was not in control of myself,then I overdosed, my husband picked it up and took me to the local hospital where the Dr gave me injection which took me through cold turkey(an experience I hope not to go through again),Had radio therapy on my back which for me luckily took away the pain due to my collapsed and fractured bones BUT now I am on the UP, feel the best I have since before diagnosis, Still have good and bad days, happy and tearful days, often think of what our life was before we became carer and patient, much preferred husband and wife, best friends even, BUT am so lucky to be alive and this site is so helpful to give both you and your husband hope for a future, accepting his capabilities and making the most of your lives together.
As has been previously been said MM is very much individual to everyone, but use this site to take hope that your husbands condition can and will improve, it is life changing for you both and this time of year is particularily difficult, but you have to plan for the future.
Take care
Love Babs
Hi Mavis,
I think rightly or wrongly If it was not for all the many MM sufferers who had not took part in EARLIER trials we would not have so many people being diagnosed early before the damage caused by this cancer, that is why I am doing the trials because I hope one day they can get to early diagnosis and stop it in its tracks.!
I could not manage my life without this site I must say, I have met only two other people in my local hospice whilst I was there doing a rest and restore course,but have not met them since though so it can be a lonely illness.
When I attend my local consultant appointments the waiting room is usually full of older men, so much so that it has been commented on my being younger and female ! Since finding this site I am amazed just how younger people and how many other women have MM too.
I am off this afternoon to my local hospital to have my 4 weekly Zometa and collect the next 4 weeks of drugs.
I am feeling the best I have for a long time and Wednesday managed to get through a wedding celebration which started at 11 am and I saw it through to the end at 12.30 am Thursday morning!( I have learnt how much dancing I can do ,resting between and which dances to avoid) AND I did not spend yesterday laid up resting as I have had too since my diagnosis, even managed to drive to collect one friend and we went to another for tea and cakes.
Onwards and Upwards as dear Tom says !
Love Babs
Hi Jean,
I had my SCT in March this year, I do remember being told to try and avoid getting colds or infections prior to the harvest and on the day they asked if I felt well, yes I did, (except for the bone pain due to the GCSF injections which went away almost imeadiately the harvest commenced.)They took blood tests and we had to wait to see if all ok for the harvest, about an hour later the results came back and the harvest commenced,
On admittance to Kings for my SCT the Dr came to see me and had to tell me they had found I had the beginnings of infection in my cells,(this is why they told me to try and remain cold and infection free but we don't actually recall having this explained to us at the time!) bad news I would definately feel ill on the 7th day, good news they knew what it was so would have the correct antibiotics to treat it ready for me. Gutted but reassured by the fantastic positivity of all the staff, Yes on day 7 I was ill, treated so swiftly and looked after so closly by the nursing staff.
I had not found this site at this time so did not have the support it offers,since finding it I am amazed how many of us with MM there are.
Positivity is the only way as Tom says,
Good luck to you both
Babs
Many happy returns to your stem cells Tom, you are such a tonic to me and I am sure many others.
I have been sending my daughter birthday cards to celebrate her diagnosis of her diabetes and so am expecting her to now return the favour!
we have to celebrate how lucky we are to be living with this now mangageable condition, I read the other day that America is looking to change the diagnosis from terminal to cronic.
Love Babs
Hi Guys,
Thank you for your replys.
Tom and David,
Vorinostat is the very latest drug on the myeloma xi trial.
Sorry for delay in replying but the pains got so bad my husband decided a trip to A&E was due, we decided to go to the hospital where I see my consultant and where the trial team are based.
we arrived at 6.45 in the morning, to be given what I can only was the very best and quickest treatment ever,they suspected either blood clot, chest infection or phneumonia !!!(all were impressed when I took out my bag containing ALL my medication, I explained that's because I have been attending hospitals so much since diagnosis and we are always asked to take all medication with us )Anyway canula in, bloods taken and antibiotics started, two monitors, one for all my vital signs then ECG to check heart, then off for x ray , and then 2 ct scans and then ultra sound of my abdomen, all before 10 am !
Anyway then admitted to CDU and then decided to keep me in over night but the antibiotics seemed to take away the pain, but they were concerned as my liver results were abnormal.The duty dr spoke to the trials team who said it was usual side effect of the revlimid, and yes when I gave the dr the paper out of the drug packet he read it fully,all listed there including the abnormal liver results.
The trials team said I should continue to take the revlimid as have only 3 more days then week off them and they then due to review me on 14th Dec.
So Graham ,
this may happen to you but I hope not, but the Dr I saw said we did the right thing going to A&E and to do it again in these cases.
Must admit am having second thoughts about doing this trial but then remember how with us doing these it has helped to get to the early diagnosis which means a lot of people have myeloma without the damage it does if not caught early enough.
Anyway feeling a lot better now, still believe I am very lucky as this is my first admission to hospital since my STC in March!
The young Dr who discharged me said how on the CT scan he could see lots of myeloma cell damage to my skeleton, he actually sounded shocked, obviously first time he has seen the damage myeloma does!
(No surprise for us myeloma sufferers though.)
Babs
