[bev2504Participant]

Hi Amanda

Thank you for the response. My 6th cycle of VCD was postponed on 25th July, due to the Velcade side effects. They started me on a new medication to help reduce the nerve pain, which has worked somewhat. I started my 6th cycle on a reduced dose of Velcade on the 2nd July. It didn’t take long for the side effects to re-appear, but at least I’m only on a weekly injection as opposed to twice a week. I’m just waiting for my bone marrow aspiration appointment so that they can fully assess how effective the induction chemotherapy has been, not looking forward to that procedure!

I hope your SCT goes as well as can be expected, keep me updated.

Kind regards

Beverley

[bev2504Participant]

Hi All

After my horrendous time in Feb on CDT, I am due to start cycle 6 of VCD tomorrow. At this point, I am undecided as to whether or not i am going ahead with this last cycle. The neuropathy from the Velcade is horrendous, leaving me in bed 5 days out of the past 2 weeks!

That said I’ve had a really good response on this treatment my PP levels were down to 8.9 when last checked 3 weeks ago, i’m hoping this is enough of response so that I won’t need anymore Velcade. Then it’s time to think about the next stage, which will be another bone marrow aspiration, followed by the high dose chemo to prepare me for the STC. There are so many positive stories on here, at the moment it just seems like a really long road!

 

Beverley

[bev2504Participant]

Hi Amanda

Sorry to hear about your lost blood tests, it’s really unacceptable. I generally have bloods taken on the same day as clinic and have results back on the same day, so the consultants and the team always know what they are working with.

Matt…….thank you for the book reference, I’ve purchased a copy and will begin reading it when i start on my new medication regime at the hospital tomorrow.

Thanks again

Beverley

[bev2504Participant]

Hi Amanda,

I’m not sure of the process of SCT either, but the information from Matt is useful. I’m just hoping my process of the next chemo cycle is a lot smoother from here.

 

Beverley

• This reply was modified 9 years, 8 months ago by  bev2504.
• This reply was modified 9 years, 8 months ago by  bev2504.

[bev2504Participant]

Hi Tony

 

Thank you for the response. It’s very disheartening, I should have been part way through cycle 3 by now, instead it’s almost back to the beginning. Hopefully this week’s appointment will prove more positive.

Beverley

 

 

[bev2504Participant]

Hi All

I started CTD on 15th January and I can say it’s been a journey. I convinced myself it was going to be easier than I imagined and I was going to continue working throughout….well the best laid plans!

I came to the end of cycle 1 and was unable to start cycle 2 because my neutrophil count was to low to continue with chemo, so I was given a break for a week. That was on the Thursday, by the following Tuesday I was an emergency admission to hospital with what turned out to be an allergic reaction to medication, at the time of admission, Drs were unsure as to which medication it could be. I was in for over a week, just trying to work through the effects of the allergic reaction, which resulted in me having an all over body rash (very itchy), my face and neck were extremely swollen, my right eye completely swollen shut at one point and a raging temperature. They ruled out most of the meds and trialled me on the lowest dose of Thalidomide once I was discharged, and the symptoms started again shortly after, which confirmed Thalidomide as the culprit. So now I’m facing a new medication regime which will be discussed and decided this week. So back to the drawing board! Very disappointing, but trying to remain positive!

I hope you all have or have had an easier time, it’s a difficult road without the complications, I just tell myself it can only get better from here!

Beverley

[bev2504Participant]

Hi Pepita

Thank you for the reply. I’m so glad you’re feeling relatively well after your stem cell transplant. My husband keeps saying ‘take it one day at a time’, so i’m trying to do that….very hard to do, as I’ve always been a planner!

I’ll have to just wait and see how the chemo affects me and remind myself (often) that it’s ok to not be ok!

I’m on the UK support group on Facebook, thank you.

I’ll let you know how it goes.

Take care

Beverley x

• This reply was modified 9 years, 9 months ago by  bev2504.

[bev2504Participant]

Hi All,

Where to start?! I was diagnosed in December 2013 with MM and I’m 43. I have been on the ‘watch and wait’ list with the hospital since being diagnosed, with monthly visits to the hospital. To be honest I have been really grateful with this approach as it’s taken me the 12 months to really come to terms with the diagnosis, but now i can really tell my health is deteriorating. I’m now at a point where I need chemotherapy and will be starting this on the 15th January in the myeloma XI trial. I am still working full time, as this really helps to keep me somewhat sane!

I think my biggest concern is having my children watch me go through it. My son is 18 and due to go off to uni in September, and has already started to talk about deferring his place, which is something i really don’t want him to do. My daughter will be 16 in March, with everything being a teenager entails and my husband is insisting on pretending everything is ‘normal’ as his way of coping with things! So a catalog of feelings and emotions to deal with, as well as my mum watching me (her baby) going through this.

It’s bizarre, when you’re in it, it’s everyone around you that you’re concerned about, or is this just me??

I’m trying to prepare myself for the next leg of this journey and some days feel i am, and other days not so much. I really want to continue to work, to hold onto some normality and i’m fortunate enough to work for a charity who really look after their staff and will do whatever i feel is best. It’s been good reading through others’ experiences, i didn’t think it would help initially, but it has, so thank you.

[Author]

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