[sue48Participant]

Hi Mandy

Many hanks for your  reply, helped a lot, just bothered if they put me on Thalidomide, was terrible on that when I as on the CDT, unless they can put me on a smaller dosage.  Hope everything goes well for you. Will let you know how I go on, thank you gin for your help.

 

Sue

[sue48Participant]

Hi Linda

I was diagnosed in August 2012 I was put on CDT for 6 cycles, I did not go through with the SCT, I had 14months remission, then PP started to rise, I am now on the same as you VCD, my 5th week of first cycle, I have an injection once per week for a month then 2 weeks off. The nurse comes to my house to give me the injection. At the moment I am feeling fine, keeping everything crossed  I see you had not long in remission, saying you had the SCT, one of the reasons why I did not go ahead, because you feel so ill for months and another my age 66, some people are lucky and maybe go years before a relapse.

Hope everything goes ok

Sue48

[sue48Participant]

Hi Susie

I agree with you regarding SCT, I am 66 and decided against it was diagnosed in 2012, was so ill with the treatment CDT first time, I to believe in quality rather than quantity, I am now on my 2nd line of treatment, VCD after relapsing after 18 months, so far no side affects, keeping fingers crossed.  I say why be ill for around 4-6 months with a SCT when sometimes it could only give you 12 months in remission, so long as they keep bringing new drugs out, I will stick with the treatment. I feel fine with no pain or anything.

Hope all goes well for you.

Sue48

[sue48Participant]

I made a donation for comp, my name doesn’t appear to be on list.

[sue48Participant]

Hi Megan

Thank you for your reply, just thought I hadn’t seen him on here for a while.

 

Sue

[sue48Participant]

Hi Sharon

Sorry forgot to mention Velcade  injection once per week.

Sue

[sue48Participant]

Hi Shaon

Do you mind me asking what dose of cycloph. and dex were you on, and what dose are you on now, jus interested, have  just started on cycle 1 day 3 I am on  cyclophosphamide 30mg and dex 2mg, no effects so far but early days.

Before I relapsed the first treatment was thalidomide 100mg  cyclop.500mg and dex 400mg made me feel ghastly

Your help would be appreciated.

Take care and hope you are feeling better soon.

Sue

[sue48Participant]

Hi Dorothy

Just been reading your post, on the VCD, I am starting that treatment today, I am worried sick of the side effects, are they as bad as what they say.  I went through the CDT 18 months ago and was really ill, so I am terrified once again, I decided not to have the SCT because I was so ill with the treatment, I felt I could not  have coped going through the SCT. Your help would be much appreciated. How long is the treatment for?

Sue

xx

[sue48Participant]

Hi Jan

Thank you for your reply.

Sue48

[sue48Participant]

Hi Jean & Helen

Thank you very much for your help, I have emailed the myeloma Nurse, very kind of you to reply.

Many thanks

Sue48

[sue48Participant]

Hi All

I am starting Velcade , Cyclophosphamide and dex  (VCD)on  Wednesday, does anyone on  VCD also inject with Fragmin, my Doctor says I don’t need that, but looking around most people seem to be on fragmin, also are the side effects on VCD as bad as what you read, I will be on weekly velcade , am  dreading it, any help would be very much appreciated.

Thanking you

Sue48

[sue48Participant]

Hi David

just been reading your post, you say you are on velcade, are you also on cyclophosphamide and dex, VCD , by reading on this site not many people who have relapsed seem to be on all 3, I start treatment net week, but the only thing that I am concerned about is the Chclophosphamide, your reply would be appreciated.

 

Sue48

[sue48Participant]

Hi Anthony

Are you on the VCD   Velcade/Cyclophosphamide.dex or just Velcade, I know I keep going on about side effects, but reading some comments they sound horrendous , like I said the CDT was bad enough, ill for most of the time.

Sue48

 

[sue48Participant]

Just seen Doctor today, I have been put on Velcade/Cyclophosphamide and Dex is anyone else on cyclophosphamide,as well as velcade and dex. I thought I would just  be on Velcade and Dex, start next week, can’t say I am looking forward to it., How long is the treatment for, I was having to take that much in, by the time I got home my mind had gone blank. Any help would be appreciated.

sue

[sue48Participant]

Thank you Ian for your help, I will read the guide.

 

Sue

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