[susieParticipant]

I’m rather down today. Had my hospital appointment, and my paraprotein has gone up to 42. Consultant tells me I have to expect that I’ll be on Velcade treatment within the next 6 months. I just can’t bear the thought of feeling like I did on my first which was RCD. I feel so well at the moment.

I’m having to have a break from Zometa at the moment as I’m awaiting invasive dental treatment. I do wonder if this has had an effect on PP levels. I was referred some 3 weeks ago, but still await an appointment.

Sorry for the rant. I do hope everyone is ok.

Best wishes

susie

[specofsandParticipant]

Hi Susie,

Its always difficult to know what to say to news like yours, some will talk about what a bad time they are having or have been through which is not what you want to hear really, right now its about you, not me or anyone else.

Rest assured many people on the forum will have read your post & really felt for you because we are all going to be in the same position at some point.

The shock must have been intense, you’ll have your down time but you’ll soon pick yourself up & get on with what has to be done because thats what we do, you are still here & most people would say thats enough. Its not always but thats another story.

Take the very best care Susie, many forum members thoughts will be with you.

Ian.

 

 

[annlynnParticipant]

stay strong susie mine jumped up in october had four cycles of velcade two more to go give yourself a few days to be angry and upset then lookahead you will find your inerstrengh. good luck. annlynnexxx

[susieParticipant]

Thank you so much for your kind words, they really help. I’m sure after a few days I’ll feel more positive, like all of us, I have no option really.

annlynn, How did you get on having the Velcade ? side effects etc.

Best wishes

susie

[annlynnParticipant]

4 cycles down having a sun holiday sunday to tenerife then 2 more to do its been ok sleepless nights on steriod. days little bit nauseous but on the whole not bad. proteins. down from 25 to 6 already so all positive xxx ann lynne

[susieParticipant]

annlynn

That doesn’t sound too bad. So you’re going on holiday in the middle of your treatment then.
I hope you have a lovely time. Sounds as though the velcade has worked well for you, without too many side effects.

Best Wishes

susie

[annlynnParticipant]

yea spoke to consultant yesterday shes happy with me going she acually said. it would set me. up nicely for the next two !!! mind she also asked if id consider a second sct. now thats somethig ill have to think long and hard about xxxx annlynne

[smugglerdaveParticipant]

Diagnosed in July 2015. Treatment routine has been interrupted several times by admissions to hospitals for unrelated illnesses.

I live in West Wales, and receive chemo at Glangwili (Carmarthen)Hospital day unit.

I have never been able to contact anyone to share thoughts and/or feelings about this disease. The nearest place I have found to attend talks or meetings is in Cardiff 96 miles away from me.

It would be good to communicate with someone, anyone, and I hope that someone will make contact with me to help break the seclusion of being in such a remote place.

My E-Mail is: mcwilliam573@btinternet.com

Thanks, David

[specofsandParticipant]

Hi David,

I guess it is safe to say that it is good that you have found this website where there is a wealth of information, people to contact for various reasons who work with & for Myeloma UK & of course the forum where it’s possible to enter into discussion with many people who have Multiple Myeloma or people closely associated them.

Personally I was diagnosed in Jan. 2016, 6 cycles of chemo(VTD) followed by a SCT at the end of Sept.’16, I’m now about to get the results of tests(today) which will indicate how well my treatment, so far, has been.

Right now I feel fine, I know that it is a game of roulette, in that even if the squatters are gone or just about gone, they will return at some point, it is all about time, how long will I get before treatment begins again.

I try & push that to one side & just get on with enjoying my life, family & friends, after all we are no different than anyone else in that nobody really knows when their number is going to be called so I will continue to be as “normal” as I can, for as long as I can.

Some say our bonus is that Myeloma gives us time as opposed to our lives ending suddenly but I think there are pro’s & con’s to that, it depends very much on your viewpoint.

Well David hopefully others will respond to your posting soon or have already emailed you directly, maybe you could post on a specific subject or maybe respond to someone else’s posting.

I do wish the very best though & be lucky.

Ian.

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