[slimynoseParticipant]

Hi Tony
Such a lot has happened in the last month or so. I have had 2 rounds of DT-Pace. Each one meant a 6 night stay in hospital. There were tears over face time, especially at bedtime, but the family made it through. Unfortunately, my pp’s were 8 going in to the treatment and are……still 8. So I’m bummed that I had so much toxic chemo and had to be away from the kids, for no benefit. Consultant says I need a tandem transplant, so it looks like we are in the foothills of some fairly big mountains yet to climb this year. I’m starting to feel more anxious about appointments now, as I haven’t had a single piece of positive news since September. Genuinely considered not picking the phone up on the consultants call yesterday..,

[slimynoseParticipant]

Hi Tony, again so good of you to check in. I’ve definitely reached plateau with VTD, so yesterday I found out it’s DT-PACE for me, possibly even next week. The kids are naturally anxious; in all honestly I think they forgot about the whole myeloma situation because life was pretty normal and I’m feeling fit and well. Now they are a bit more suspicious and unsure. But they will be ok. I have to say that I’m struggling a bit emotionally, although I have lots of strategies to use when I need them. My consultant says my genetics are not high risk at the moment, but that doesn’t stop the mind doing overtime, analysing why the treatment didn’t work. This is the most difficult period since my diagnosis, but this too will pass! Again, thanks so much for being there, it really helps.

[slimynoseParticipant]

Hi Tony, thank you so much for thinking of me, I have been doing well but have had a setback and didn’t know who to talk to- then I saw your message!
My consultant phoned today to say that my response to VTD isn’t too good. Proteins began at 20, and monthly have gone to 13.6, 12, now 10. He suggests one more cycle and then DT-PACE. I haves free concerns, one being leaving my children to go into hospital. My youngest is already really upset about the thought of my going in for the transplant; now I will likely have more hospital stays.
My other worry is why I am not responding to VTD, and wondering if I have a form of myeloma that will be resistant to treatment. The consultant says genetic testing isn’t really done on the NHS and doesn’t really change treatment decisions anyway. I guess I’m hoping a good remission is still possible, even if I have to have DT-PACE. So many questions!
I think when first diagnosed I consoled myself with the fact I am young and healthy and I had a great chance of kicking it into touch. Today has been a reality check.

[slimynoseParticipant]

Hi Melanie, I’m just a few weeks ahead of you and your husband. I was diagnosed 5 weeks ago and have just begun week 4 of treatment. The initial shock is so overwhelming and, I have to say it’s still hitting me in waves. What I would say to you specifically at this time, is to contact Macmillan. They have a fund of money (in partnership with bupa but free for us to access) specifically for people going through the process of cancer diagnosis. I have been access to 6 remote counselling sessions and it’s proving really helpful, especially to go through how to talk to my young children about the diagnosis and treatment. Hope it’s something your husband would consider as it’s only open to patients and not family members.

[Author]

Posts