[paulapurpleParticipant]

Latest blog post. For previous see mymyeloma.wordpress.com
Last week I saw my consultant and he confirmed that the current treatment I was on (CTD for those that know what this means) like VTD hadn’t succeeded in reducing my light chains so we are no further forward. The next step is to be DT PACE, a fairly aggressive regime for those of us that are refractory (resistant) to treatment. In the summer, I thought that I might be undergoing a stem cell transplant in January 2018, not DT PACE! Back then perhaps I was a little naïve to expect my treatment to be straightforward, rather than discover that my myeloma was refractory!
I can’t say I am looking forward to this at all but it’s worth a try. It’s a combination of four Chemotherapy drugs, a steroid (Dexamethasone) and an immunomodulatory drug (Thalidomide). I will be in hospital for six days where it will be given continuously over four days followed by a month’s recovery at home. If it succeeds in reducing my light chains they will repeat it until the light chains get to near normal levels whereupon I may be able to progress to stem cell transplant, if it doesn’t work then I will be back to square one!

• In light of this, my consultant has taken me off all the drugs to give my body a break, after all they are doing nothing, until I go in to hospital on the 3rd January 2018. This has been an unexpected Christmas present; I have my life back, albeit for a short while! I have now been drug free since 11th December.
  In October, I wrote about the ‘new normal’ and how I was struggling to come to terms with that and now, for a brief period, I have the ‘old normal’ back! I can’t tell you how amazing this feels but I have had a go:
• No planning around the drugs: I don’t have to be ruled by them
• No ‘crash’ days when I come off the steroids resulting in me feeling weepy, depressed and ill
• No diarrhoea or constipation; I never thought I’d be celebrating normal ‘poos’!
• Energy every day rather than just on the ‘steroid’ days
• Reduced peripheral neuropathy
• Christmas and New Year without me worrying if I am going to be OK
• No mood swings
• No swollen ankles and swollen tummy, which makes me look like I’m six months pregnant!

OK, so there will be a massive pay off in January and I am not completely back to the old me: my legs are still weak and I’m no way near as fit as I was, but I can dance and go for a steady walk, still cause to celebrate I feel.
In July, I wrote about Thinking ‘a head’ where I considered the prospect of being bald. Now the reality is a lot closer hats are on my Christmas list; my son has cut my hair shorter and I am mentally preparing myself for the big ‘fallout’ on my return from hospital! More on that when it happens.

• This topic was modified 6 years, 4 months ago by  paulapurple.

[helenmParticipant]

Sorry to hear about your setback.  I can only sympathise – my husband has had a roller coaster ride since having his stem cell harvested in September.  I honestly thought his transplant would be done and dusted by Christmas.  Instead he has had 5 weeks in hospital resulting from infection from hickman line, a minor heart episode and surgery to pin his right femur beginning of Dec.  Not sure what 2018 will bring.  Hope your stay in hospital goes well and you don’t feel too ill.

Helen

[pipsParticipant]

Dearest Paula

I have just returned home from hospital having had my second SCT. I am feeling increasingly weak but

I just wanted you to know that I am thinking of you and I hope your  treatment at the hospital will work so that you can move to having your SCT and after that life can begin again. Soon you will be able to dance and travel and laugh again ….

Pips

[Author]

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