Hi Megan
Thanks for your message, how is your husband doing now?
The timings you have given make more sense 🙂 Maybe we misunderstood mum?
It's reassuring to hear you say Phil's appetite wasn't hugely affected, dad will normally eat anything, but the CDT really put him off certain things and it changed sometimes daily what he could or couldn't eat. Fingers crossed!
Dad already has peripheral nueropathy from the CDT. He has it in his hands and feet. The consultant said yesterday that it doesn't neseccarily mean he'll suffer more with teh Velcade, so we'll stay optimistic.
Vicki xxx
Just a quick update…..hope you dont mind mum 🙂
We went to see the Consulatant yesterday, and he confirmed the myeloma cells are active again, PP count was 18 so it is on the rise.
He was a bit cagey about giving exact results from Bone marrow biopsy, just said that they visually assess it as well as doing actual counts and he said they could "see" on the actual bone that it was active.
Next stage is Velcade…..8 courses, which cons said was 6 months but we cant figure that out as thought it was 3 weeks on treatment, 1 week off and that doesnt add up to 6 months????
He has his first Velcade injection tomorrow so we had a lovely take away curry and bottle of wine last night in case his appetatue goes to pot again like on the CDT
Vicki xxxx
Dad is coming home today 🙂 🙂 🙂
His blood levels have come up to hb 10.4 , wc 2.5, pl 24, neuts 1.91.
They wanted to send him home yesterday but it was just dropped on dad and he didn't feel ready for it. He's a bit apprehensive as he's still got sickness and diarhea.On the upside his taste buds are returning a little, so that might help with his appetite and he might even have a bit of my mums legendary xmas dinner. It's the best present we could have asked for this year.
Thanks for all your support throughhis SCT, it has really helped me keep am little bit of my remaining sanity. I'llkeep you posted with how he gets on.
MERRY CHRISTMAS xxxx
Day + 12
Just got back from hospital, dad still not getting any better. His bloods are still down, and he's had 2 lots of platelets but they havn't come up yet. He's having blood transfusion for his iron levels. His neutrphils have been at no value for 6 days now…..shouldn't they start to be coming up now????
Can't help but worry that he isn't responding 🙁 I think i just need someone to tell me that this length of time to respond is normal…..
Thanks
Vicki
Thanks David, i will try that and take him a shake tomorrow afternoon. Dad has no appetite and says what he does tastes wrong.
Popped to see him for an hour today. He'd managed half a cheese sandwich and half a penguin biscuit. He was awake, although v tired, and just laid and listened to me and mum gabbing away….just like being at home LOL 🙂
All his bloods are down and his neut level is down to 0.65 today. Fingers crossed he's close the turning point.
xxxx
Thanks Mavis, before the Myeloma my dad ate like a horse, so it's awful to see like this.
Well Day + 5 today.
His diarhea has got lot worse, and he has had to start wearing incontinence pants 🙁 He feels so ashamed about it, and embarressed that the nurses have to clean up after him. He still on immodium every 4 hrs, and last night he was managing to go a little longer between incidents so i'm hoping the worst might have passed. He managed 1 sausage yesterday, so they got a dietician to come see him. All she could come up with was "eat"….i could have swung for her!
He's been sleeping pretty much 24/7 since Sunday which is good for him, plus makes the days go a bit faster for him. Touch wood though he's avoiding mouth ulcers.
HIs neutrolphiles were down to 1.35 on Sunday, the lab didn't send the results back yesterday, apparently they don't always send them!!!
Other than that dad is having really good care.
Day 1
Been to see dad this aft. He's managed to have a slice of toast and some rice pudding, but is still feeling really nauseaus and keeps having bouts of gaggin/retching but brings nothing up. Diarrhea has kicked and they gave him some Immodium, so fingers crossed that starts to work. They put him back on a drip, beacause of the diarrhea and his potassium levels are a bit low.
His line in his groin (his arm veins are uselss) and they had been connecting it down the leg of his shorts so i asked them to do it up through the waistband as he'd been struggling with his shorts when going to toilet…..not good with diarhea.
When i was there he started shivering, but wasn't cold and he was bit dizzy. Nurse came and did his temp and BP and all was fine, she said it could be sign of infection. This scared dad, and he got quite upset. He's trying to hide his feelings, especially from mum as he doesn't want to upset her.
His neutrophils (is that right) were 2.15 yesterday and are 3/4 today.
xxx
3am and not sleeping, brain will now not turn off! Know i shouldn't dwell on it, but dad has suffered with depression for as long as i can remember. When he was first diagnosed my initial thought was his depression would return, and that scraed me more than the myelom. If this triggered his depression there was a strong possibility he would just give up and not fight it. But on the contrary, he has been sooooo brave and an absolute inspiration. Yes, he's had plain shit days, and at one point he did start to slip, but a bit of plain "pull yourself together" talking put him right. Dad doesn't respond to nicey nicey in those situations!!
Dad just has to ride out the SCT now, and having an idea of the timescale helps me to understand how best to support him to get through it pysically AND mentally. He's come so far without the dreaded D kicking in, i just want to do whatever i can to keep it that way.
Right, am off to try and get some sleep
xxx
After a bath and tea, my brain has kicked in.
Roughly how will it go day by day? When will dad likely be at his worst and when roughly will he start to feel a bit better (or less s**t!)?
Thanks to for all your replies, i'm a sponge for any bit of insight i can get at the moment, it's the best way i feel i can help apart from just being there for my mum and dad.
I saw dad yesterday just before the chemo was given. He seemed quite up but i could tell he was scared witless 🙁 The isolation room was HUGE, and he looked like a little man in a little bed stuck in one corner which really upset me. It made him seem even more alone. When i left he hugged me harder than he's ever done before….it was like he was scared to let go.
The stem cells were given today and Mum said he slept for almost all her visit. He's managed a little bit of breakfast but is feeling quite sick now, so he's had 2 lots of anti-sickness drugs.
I'm going to ask tomorrow about a freezer for some lollies/ice cubes as there is only a fridge in his room.
I was going to visit tonight, but mum think's there's no point. Seems selfish but i'd feel a bit better if i could see him, even if he's asleep.
I was at the hosital nearly everday when he was first diagnosed, but i've had a little boy since then, so it will be harder for me to spend at much time there when i feel like he needs me more.
I'll keep you posted
xxxxx
Hi Only me
My dad went in for his SCT yesterday, and he starts his chemo today, so we are only a little way behind you. I popped on here to have a bit of a cath up on the reality of SCT, as i'd rather expect the wosrt. I think my mum is unprepared for how tough it will be on dad.
I just wanted to say hang in there, and i pray that your mum starts to feel a bit better each day and her levels come up.
Sending you lots of positiveness
Vicki xxxxxx
The community McMillan nurse had said dad could reduce his diazepam to 1/day from 2/day as his back pain was much better. Dad didn?t like the constant drowsiness from it, and doesn?t like taking pills if [b]HE[/b] doesn?t think he needs them?..(typical man! ? ). It was after this that he struggled to sleep, the consultant told him in no uncertain terms to go back onto 2/day as sleep was more important. His mood really went down in hill during those couple of weeks, and we all feared his depression was creeping back, but he?s doing much better now and sleeping again.
They increased his Thalidomide from 1 to 2 tablets/day on cycle 2, but he developed pins and needles in his hands and feet, so they took him back onto 1. Because of this, they increased his cycles of CDT from 4 to 6. That knocked him a bit too, as we kept trying to keep him up by telling him he was halfway through the CDT. He?s come to terms with it now, and they have tried him back on 2 thalidomide/day again. He?s been on it for 10 days now and no pins and needles. Lets hope it stays that way.
He?s allowed to come out of his back brace as the vertebroplasty has worked a treat. They were worried that some of the cement might have seeped out as his bones were so soft, but it hasn?t and he?s a free man again. Well sort of, he needs to wean himself of it as he?s lost all his strength round his middle and lower back, but it?ll make a huge difference to him.
He?s had his dental work done, and started his bisphosphonate last week. He?ll be having them every 3 weeks when he goes back for his CDT tests. His para-proteins are coming down nicely, 60 before CDT, 37 after 1st cycle and 18 after 2nd cycle. Do they have to get to 0 to do SCT?
For those who had CDT and SCT, did you have a break in between your last cycle of CDT and SCT? Dad will finish his 6th CDT cycle on 19th October, and he?s worried about being in hospital in isolation over xmas ?
My first baby is due in 15 days, and I?ll be on maternity leave so we?ll be able to spend lots of time with Grandad from now on which will be fab.
Thanks for all your support xxxxx
Hi Tom
Dad appears to be going the same way with his CDT, he's getting weaker too. He's not been able to work since March, and we're working through trying to get him DLA and something else but can't rememebr what it is now. He struggling to sleep, despite being absolutlely exhasuted….any tips???? Will this be the evil Dex at work??? He got quite upset yesterday, which was heart wrenching, it's awful to think how he and mum are feeling through all this.
It went well at his meeting with the consultant last week. He has IgG type, which is the most common i beleive. His para protein levels at 60, consultant said that is high, but to be expected at this stage of treatment. His calcium and iron levels have stabilised and his renal function has got better. His skeletal survay showed bone damage in his lower ribs, upper chest, and both humerous bones. It also showed some Spondylitis is his neck which i've not read about. Is this linked to the Myeloma? They've decided not to do radiotherapy treatment for now. They doubled his Thalidomide levels for this second cycle.
He was due to start bisphosphonate, but he needs to have some teeth out, so they said he has to have them done before he can start that.
Hoping and praying
Vicki xxxxx
Thanks Eve
I'm hope that's the case for dad, although he's been feeling poorly with this first cycle, but it's not been nearly as bad as i expected when i thought about him having chemo. He said something similar himself, which is reassuring, cos i think he was very scared about starting the CDT. He's just super tired at the moment, and back to spending much of his time in bed again 🙁
I will tell mum to mention the pain in his ribs as his apt tomorrow. He has had the same pain before, so i'm hoping it's not an infection, but better to be safe.
I don't know about the "type" of myeloma, do you mean about the type of immunoglobin affected? The consultant never said i don't think….another question for tomorrow!
Originally they planned on giving dad some radiotherapy to treat his damaged vertabrae, and bisphosphonate infusions, but nothing else has been said about it since, so mum is going to push about that tomorrow.
Time for a quick update…..
Dad is coming to the end of his first 21 day cycle of CDT, and is back at the hopsital on Wednesday for his tests. I'm trying not to think about it, as i don't know what to expect. DOn't want to get hope's up and then see nothing! Do you normally see improvements in levels after 1 cycle???
His pain was managable with diazapam, paracetomol and codeine (i think), but it's been getting worse again, especially in his lower ribs. He had a really good few days on his second lot of steroids, and luckily his moods havn't been that off the scale so far when on them. The 3rd lot of chemo last week (Tues) knocked him till Sunday which was a bit of a shock as he'd been feeling better by the Friday on the first 2 weeks. Is this normal? I guess it's just teh chemo building up in his system???
Vicki xxx
