[piatkazParticipant]

Thanks for the reply’s I was given Quinine sulphate and take it on the first and second day’s of taking steroids and it is really helping with the cramps.
Many thanks Ian

[piatkazParticipant]

Hi Mandy

I’ve had a tanderm transplant auto then a mini allo using my brothers cells in 2011 only got a year out of the allo but we are all different currently on rev and cyclo I was diagnosed in 2008 Jan and still here.I found the actual allo alot easier to get over as you dont have a high dose chemo.Like someone else mentioned there are a lot of treatments still out there and trials on others I cant see why your consultant would asy that stay positive.If you want to e-mail me with any questions there’s no problem piatkaz@aol.com
All the best Ian

[piatkazParticipant]

Hi Hope the BMB results are ok,I have issues with PN and have just bought some microwaveable slim slippers and wear them at night in bed and it really has helped just a thought
Ian

[piatkazParticipant]

Hi Jo

you will with time,any questions just ask weve all been there on this site but you need to accept it if you feel better e-mailing me I'm on piatkaz@aol.com or I'm on facebook
All the best Ian

[piatkazParticipant]

Hi Jo

Theres lots of encouraging stories on this site I persomally thought it was the end of the world for me but here I am 6 years on and feeling well the treatments and drugs are improving and new ones being devoloped I feel more positive now than when I was first diagnosed,keep positive it does take a long time to adjust.
Ian

[piatkazParticipant]

Hi Jo yes it is early days for you and will get better,I am on 4 days of dex at 20mg/day I have always suffered with Dex so a few weeks ago my specialist mentioned I should only take 12mg on the last day then take the folowing 8 mg the next day that was last week and it was alot beter,mention it to your specialist I'm doing the same this week and hoping it wasnt a one off.One bit of advice is if he's feeling tired durring the day tell him to go to bed and sleep dont fight it
Ian

[piatkazParticipant]

hi Jo

Dont worry I think we all suffer from this it's the period you are coming off the Dex it can last for 2-4 days for me more tired than low but very irratable.
Ian

[piatkazParticipant]

Hi Carol
on my latest cosultation my specialsist said I was lucky to have a strong immune system that can cope with all the toxicity thats thrown at never had any issue, normal nuetrophils through out my 6 years with good white a nd red bolood counts and good platlet results.She said there a lot of patients who cant take the treatments and have to come off them early so touch wood it continues.
Ian

[piatkazParticipant]

Hi Tom
I still get aches from my back every now and then from standing up for too long the area is from when I had back pain when I was first diagnosed almost 6 years ago.
Ian

[piatkazParticipant]

Hi
Just got the results from my first cycle with cyclophosphamide and my light chains have dropped form 1500 to 274 so feeling much better now also back and rib pain easing so staying with the cyclo rev and dex treatment leaving the bendamustine for a later date long may it continue first bit of good news for months
Ian

[piatkazParticipant]

I have been on Rev for 5 cycles and it never worked and the light chains started creeping up each time then started jumping the last 2 cycles they added cyclophosphamide and my light chains reached 1500,I see a specialist everytime I go and receive blood test results.Hope Slims well.
Ian

[piatkazParticipant]

Hi Eve
Thanks for the reply when I got the results from the MRI it did frighten me but thats what paranoia does to you with this illness any aches or bad results I think the worse even though I am a very positive person and your right MM effects people in different ways.Your right about the MRI's it took 6 weeks to get an appointment to get the MRI when I'd been asking for one for months you know when there's something not quite right wth your body I've had this illness for nearly 6 yrs.
Saw the specialist today and as the Rev isnt working there going to put me on Bendamustine but have to see my consultant in Birmingham to confirm this.
Many thanks Ian

[piatkazParticipant]

Hi Dick (sorry dont know if this is your real name)

Thanks for that,I had bad pain in neck and ribs a few months ago only had the MRI 2 weeks ago but in that time They have added cyclophosphamide to my treatment because revlimid wasnt working and the pain has dropped drastically and am able to do a lot of things now.I only got the results today when I rang them up and it panicked me thinking it was spreading every where,but lessions were only in my spine

Many thanks Ian

[piatkazParticipant]

Thanks Eva
I still get paid a percentage of my wages from work due to being lucky having critical illness from work so I am still in constant touch with work I am awaiting a phone call from the HR department and then will get in touch with the work pensions advisor.
I'm afraid all these pension talks go right over my head and not sure what I'm entitled to just thought I've been putting money in this for 25yrs and would rather have the money in my account so the wife can use it when I am gone (hopefully not yet haha)rather than minimal payments per month.Also we could enjoy life better with the money.
Many thanks for the reply
Eva

[piatkazParticipant]

Hi
Saw specialist and he has decided to keep me on revlimid but add an extra block of dex and cyclophosphamide and try it for a couple of cycles and see how it goes,fingers crossed
Ian

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