[elsshepParticipant]

Hi this the first time ive been on here.

My husband was diagionised at the end of jan this year, he was extremely poorly by the time they discovered what was wrong. To cut a long story short, he choose to go on the clinical trial and was randomised with the ctd treatment. He has had his ups and downs been admitted with pneumonia in march but battled back and we are now   on the last block of ctd. What I wanted to ask was, is it normal when you take the steroids for them to make you breathless? Ive noticed his ankles also seem to be a bit puffy. He feels all the medication builds up in his system and can actually feel his tummy gurgling away. Has anybody else experienced these symptoms? These passed six months have been an emotional roller coaster and he may be going for sct in august. I find it all very frightening and scary. appreciate any feedback to help us

 

[CarolsymonsParticipant]

Hi

I was also really ill by the last cycle of CTD…in fact those drugs made me sicker than the melphalan in the SCT. I was dizzy, weak and breathless but didn’t have fluid retention. I did develop tachycardia (rapid heart beat) but that has now settled finally. Tomorrow it will be 5 months since my SCT. I have been back at work for 2 months and recently travelled to the Serbian Republic and Croatia on holiday (photo is in Croatia) so you see there is life after transplant. Had another dose of bisphosphonate yesterday and another blood test, so should have paraprotein and light chain results back next week. I feel OK though, so hope I am still in stringent complete remission. Hoping to retire and return home to Australia when work at my school finishes on 18 July. Don’t be frightened, there are a lot of us survivors on this forum. When I was diagnosed, my consultant said that if you have to get cancer, this is a better one as it is manageable! Not very reassuring at the time, but I understand his point of view now, 15 months on.

Carol

[tonyfParticipant]

Sorry that you have to be welcomed to this site. I was / am on the myeloma XI trials. I was diagnosed in 2012. Had 5 months of drugs, had a couple of infections with hospital stays. Had the stem cell transplant in early February 2013. Opted for no maintenance drugs, remain on the trial and have a check up every three months. Para protein are at 2.6. Feel very good, get tired occasionally, but have been on holidays at home and abroad and long haul to USA, live life as much as possible and do as much as my body allows me to do. It’s my 70th birthday in August, looking forward to many more years!
It is a scary journey, there will be pit falls along the way, but you can both do it.
The folk on this site are great and can encourage and advise on any variation of this disease and it’s treatment.
Best of luck to you both.
Regards
Tony F

[elsshepParticipant]

Hi Carol

Congratulations on the success of your sct and fantastic you felt well enough to return to work.  Fingers crossed for  stringent complete remission  result for you. It is good to know there is life after Myeloma and good to know that Geoff  is not alone on feeling rubbish on the ctd treatment.

Thank you so  much for replying, you have given me a big boost on whats been a wee down day!!  wishing you many happy years of retirement in Australia.

Fingers and toes crossed for an excellent blood result

Els x

 

[elsshepParticipant]

Hi Tony

Thank you for replying, Excellent news to hear you are doing so fantastic after your sct and your paraproteins are behaving! Geoff is hoping to go for his sct in August and fingers crossed it all goes well.  Reassuring to read about your holidays abroad, we had to cancel our holiday for this October but our aim is go next year :))

Thank you for your kind words of encouragement , I think your motto is completely right, live life to the full and do as much as your body allows you to. Sometimes when times are tough you begin to lose sight of that! I know we will get there its tough but we will get through.

Have a wonderful 70th birthday in August, I hope you will be celebrating in style, you have achieved so much.

Thank you for kind words really perked me up

Els x

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