Dear Dee
How awfully sad and shocking for you and your family, your emotions will be reeling. Stay tough for your family, as Eve says, your dad looks a character and I'm sure you have many of his qualities which will help you cope over the next few days, weeks, months and years.
My father in law died very suddenly and we found it very hard to adjust at the beginning, now I look back and think that he would have preferred that way to go, no fuss, so there is consolation eventually, but now just remember the good times with your beloved dad, and know that we are thinking of you all.
Love Helen
Dear Tom,
I feel like weeping and swearing for you! How dreadful for you, after all the psyching up and preparation these setbacks reach monumental proportion ( i had my cyclophos priming cancelled at 1 hours notice, not in the same league by any means but enough to cause me to wonder just what could happen next) and did they say how? The only saving grace here is that this was discovered before you had the Melphalan, but that is little consolation, have they said when you have to do this again?
I suppose all you can do is wait and see what they say and in the meantime keep swearing if it makes you feel better.
Love Helen ( currently feeling ashamed on your behalf to be working for the nhs:-( )
Yep good luck for tomorrow Tom, I had my melphalan on Monday, cells back Wednesday, home Thursday Friday, back in when became quite ill on Saturday to Wednesday week then home and slow recovery. Just lie back and let it ride. There is a lot of thinking time.
Love Helen
Hi Jackie
That's great, think that's one of the shortest, hope he's happy to be home
Love Helen
Dear Eve
I'm hoping things pick up a bit for you 2 once your big black book gets going!
I had zometa for 2 years, infusion drip of 4 mg in 100 ml, no other flush through needed. But advised to drink lots on zometa day. On a good day whole procedure was 30 mins, 3 hrs on a bad day. Bloods and bp all done at same time then down to clinic to see doc, this was in our supportive therapy unit.
Now I'm going twice a week to the chemo day unit for a blood sample, BP and an injection of Velcade. This takes upwards of 2 hours each time. When you add in the parking times it's an afternoon. There is approximately 10 minutes of contact time with a nurse.
I've kept a diary of my appointments so far and have sent it to the powers that be. I'll be very cross if there are no changes while I'm going!
Has Slim not been having Zometa before this?
Love Helen
Hi Dai
It's good to see you hanging in there and maybe the reduced dex might help with the dreams, I hate the dex, it makes me verbally aggressive and tired and I have no sleep my brain will not stop! I've been writing letters in my head for days now.
I thought your post was so funny especially the hiding in the wheelchair!
Look after yourself, hope you have a better few days
Love Helen
Hi Eve
I think this might be a question for Ellen too as I'm not fully clear but this is my take on my condition. And I'm at the point where I need a few lectures in haematology to understand much more of it! 🙂
At some stage the switch mechanism in the stem cells for my IgA cells was thrown and a few abnormal ones produced, and a few more lambda light chains, also there were a few Waldenstroms cells (I understand this disease is characterised by IgM cells, but I didn't question it that closely) and lymphoplasmacytic cells too. On BMB around 50% of bone marrow cells were standard MM IgA lambda. With some of all the others. This is where diagnosis becomes difficult and why symptoms can be so varied. But I have always known I had a mixed picture. I'm not sure it makes much difference, which type it is as because its all based on immune system cells. These cells change and it is difficult to track their changes, there is a high incidence of secondary blood cancers for this reason. BMB is localised to a small spot and may not pick up all the cells altered or altering. It's also not uncommon to have other abnormals cells floating around quietly for a very long time, as in smouldering myeloma. The theory is that we all smoulder for a long time before floridly developing the disease. I think I had it for 5 years before.:-/ Whatever the trigger, and we have no idea yet what causes the disease to start or advance, it seems still a long way off that there will be any real developments here, maybe David is right, and agrochemicals and petrochemicals and radiation and hair dye! are to blame but who knows, there are not many of us affected and where would we be without all these things. I look back and I know that medical advance has saved me as a child with antibiotics and as a young woman in childbirth, I've reached 59 and plan to be here as long as possible I will test all the drugs I'm offered. 😀
I'm looking forward to hearing what goes into your big black book. 🙂 I sent my letter off today about the day unit! Watch this space, ooh the dexamethasone has spoken!
Take care
Love Helen
Dear Ali
Sadly I think Glastonbury is a step too far for me now and it would have been glamping, but no couldn't get a ticket. My children are going so we will take them there and have a few days in the Mendips together where I have booked a cottage. Then we drop them off and I watch it on the telly! I've never been… When we were young we went to our local city hall which was a fabulous rock venue, I remember Glastonbury starting but it was such a long way away and we saw much the same bands as played there they just didn't have the venues for big concerts in the south west. I've watched it grow though and now with 2 musician children attending I have such a soft spot for it.
I'm so pleased your mum seems to be having fun, make the most of the October week, where are you going?
Love Helen
Hi Wendy
My initial diagnosis was 'it is very serious and I fear we have to call it an Atypical myeloma' it has always been mixed and first thoughts were lymphoma then Waldenstroms BMB seemed to show over 50% standard mm as well, they are all treated roughly the same so we have gone with the larger infiltration.I did have a second opinion, and a third, and they keep checking for amyloid too as I have the dark circles and little lumps round my eyelids that sometimes goes with that.
All very complicated, I'm tolerating the Velcade ok I think, 5 th dose yesterday and another 2 hour wait in CDU, no comfy chairs or quiet rooms here, it is vile, I'm working on my thesis of ' constructive criticism' of it!
Are you feeling better in yourself now? Or are you still reeling from the situation. I'm very grumpy and bad tempered about it, no patience with anyone! Bored with not feeling well I suppose.
Love Helen
Hi Tom
Well done, another hurdle taken at an incredible pace, I remember that bone pain, I thought my ribs were going to fall out of my chest every time I tried to get up! Good luck next week, yep do the mouthwash thing, and take it very easy it can be punishing but you just have to lie there and think rest and pass the time, it's all doable!
Love Helen
Hi Andy
That would be good, maybe somewhere halfway, I'm away the week after next so perhaps the beginning of July?
Love Helen
Hi Wendy
9/10 match is good.
I have lots of sisters but was over 55 when diagnosed so the allo course wasn't an option. I'm not heading for SCT as the bmb shows a mixed cell line.. Mostly myeloma but some waldenstrom macroglobulinaemia features and other cell changes. I was very very ill with the colitis after the last SCT so my remission was quite poor quality overall, I think he's hoping that velcade will smack it on the head quite sharply if I can tolerate it. Then the plan is to see if I get more of a better quality remission for a while, then who knows, I will keep you informed.
Love Helen
:-0 lucky ! I once looked after a man who broke his neck and he was the same , he held his neck and didn't let go until he had a large collar on, he said it felt as if he had to keep hold, he had a sense of his head feeling loose on his neck, very frightening I bet.
Helen
Ps I too have done much much crying and described a similar trajectory for myself, hence the current day unit crusade,but hang on in there lovely lady, be kind to yourself, we head for a trough again.
H
Oh b******h*** Wendy you don't believe in doing things by halves do you? As you know I'm one of they oligo secretory types so my numbers are always low and I'm being treated on the basis of bone marrow percentage. But I believe sflc numbers can go up to many many thousand. I'm not sure but if you have your initial diagnosis numbers and bm percentage there is an idea of correlation unless you have become nonsecretory. So if at diagnosis you were 4000 sflc and 50% bone marrow infiltrate, they might expect something similar, but this is not an exact science as you know and you haven't had a biopsy yet. Your numbers will have gone up a bit while you were recently ill. Will your planned mini allo be an unrelated one or do you have the family lined up to share the experience?
Take care
Love Helen
