[ilovemymumParticipant]

Aah Alison I just got tears in my eyes reading your post x I do feel that its all I talk about with my mum and dad and am trying to make a conscious effort to talk about other stuff.Hopefully over time (its only been 4 weeks) we will get back to normal. This whole business has made me feel that we cannot take anyone for granted as I really thought my parents were indestructable and would always be here,Ive always been close to my mum and as I told her last week I am her friend aswell as her daughter and as I'm nearly 40 years old she can lean on me if she needs to! I too am going to make the most of my parents as like you it gives us a chance to show how much we really mean to each other. Lots of Love Rachael x x x

[foxy555Participant]

Hi David

Hope you are well. Just a quick one. Pete has been told he can fly, but after a few calls this afternoon to Insurance Brokers (named in Myeloma information), they are all quoting really high prices. I think I remember you mentioning something about holiday insurance some time ago, or was it Tom??

Anyway, we knew it would be expensive, but not so much! Apparently it is because Pete is still having treatment and not in remission.

Any advice?

Kind regards

Ann

[dee4894Participant]

Yay 🙂
Dad is home – hopefully for a while now.
They have his pain and sickness under control and he is now able to move a little, as well as eat.
This makes me stupidly happy.
🙂
– Dee

[VickiParticipant]

Hey dee that's great. I wondered how you and your dad were doing!

That's great, these medical teams can work their magic

Take care and I hope your dad carries on making the progress he has . Take care

Vicki

[PerkymiteParticipant]

Hi Ann, see my post under "Off Topic". Hope it helps

Kindest regards – vasbyte

David

[AliParticipant]

Hi Dee

What a relief for you and your family. Not surprised you are happy!

Keep us informed of your Dads progress.

Take care Alison x

[tomParticipant]

Hey Dee and Dad

Well I for one is pleased they have sorted out you Dad's pain and sickness 😀

Am sure your Dad is fealing good by able to move about a bit and eating a bit more, tell your Dad he is now an "Onwards and Upwards" Guy8-)

Love to you all

Tom "Onwards and Upwards" xx

[dee4894Participant]

Hiiiiii…
We're a little confused about chemo cycles. Is 1 cycle 3-4 weeks? Like.. My dad is having chemo once a week, and he thinks that after 4 weeks, that's 4 cycles? Or is one cycle 4 months? So. 16 sessions? I don't know.
Thanks in advance.
Also thanks for the messages. 😀
– Dee

[HelenParticipant]

Hi Dee
You are having a bad time of it. The chemotherapy usually is a few drugs which work together to help reduce the volume of myeloma cells in the bones. You take them for about 3-4 weeks each cycle. Sometimes they are oral drugs or a mixture of oral and intravenous ones. Depending on what he is on and how well they work, he will have about 5-8 cycles. If he is on Velcade is a 3 week cycle and you may get 6-8 cycles. Generally speaking, you stay on the same drug until it stops working, then switch to another to reduce the myeloma burden. Then go for stem cell collection when there are fewer myeloma cells in the body. After that is a big dose of chemo, Melphalan, to completely kill all the myeloma cells.
Does this help? Do you need more? there are lots of info leaflets on the site which might help you too. Though sometimes just getting an answer when you think of the question is the best way. 🙂
Love Helen

[ilovemymumParticipant]

Hi Dee
My mum is having velcade on its own once a week injected subcutaneously, she does 4 weeks on then 1 week off, this is classed as one cycle. She has been told she will have 6 cycles so that will be about 7 months altogether. I hope this helps and you are okay and staying strong x x Love Rachael x

[dee4894Participant]

Thank you!
He went in for a picc line flush and asked then, they confirmed what you said. He's pretty down about that because he expected it to be over quickly. Which I guess was daft. He is having 4 cycles. Is that because he's older or the illness is worse or.. I dunno.. It seems many have more, as if their body has more to give? *shrug*
We're all okay though, considering.
Also a possible symptom that he has.. He has no feeling in his left little finger/side of hand. Doc and physio said it could be either nerve or cancer related? I dunno. I just thought I'd ask.
Thanks! Hope you are all well and in good spirits and what not.
– Dee

[HelenParticipant]

Hello Dee
Every one is different, he will only get what they think he needs to reduce the cancer cells to the lowest level. He is a year younger than me, I had 4 cycles initially. A bone marrow biopsy then showed complete remission. So I went on to have auto stem cell transplant, as he may well do if he has a good result and his kidney function improves. At the beginning of the treatment it is very hard not to be frightened, you are ill and made much sicker with the chemo, his world, as yours, will be shattered and he will wonder if he will see his beautiful child grow up. I know I felt and thought like this initially.
Now, I'm better, I'm not so terrified, more cross really but back to something like my old self. I hope your dad soon gets back to his old self but for the moment try and divert his attention, watch favourite films together, eat chocolate and look forward.
Love Helen

[dee4894Participant]

Hi Helen,
Really happy for you being much better. How come you're cross though?
Oh, and also, were you less mobile and things at first? Because my dad is, and that's what makes him the most angry. He has tonnes of orchids etc – a large, packed greenhouse full of them, as well as our entire kitchen window sill. I've had to take over looking after them because he can't lift things or stretch to do anything. He says he'd be much happier if he could do more.
– Dee

[tomParticipant]

Hi Dee

I had my SCT in dec 09 and am now in remission and drug free (age 57 just lol) and I cant do what i used to be able to do its now another learning curve for your dad and he will have to cut down some of the things he used to do till he is a bit better.

Tell you Dad I understand how he feels as I was the same when Eliane (ny young bride) and three sons took over my bits and bobs (even my fishing rods lol) But its worth it all in the end "Trust Me"

Love

Tom "Onwards and Upwards" xxx

[HelenParticipant]

Hi Dee
At the beginning, while you get used to the drugs you are not fit to do much really. It's exhausting and anything feels like an effort. You also are coming to terms with the shock of your diagnosis and the effect it is going to have on life as you know it. From now on he will be a different person. He will be taking stock, prioritising and adapting to this new life of treatment and probably a bit of fear. This takes time but you have to do it at your own pace, try to be as normal as possible but he might need some space too, I don't know its a very trying time.
Anyway, why am I cross, probably for the same reasons, my life has changed, the plans I had, the things I wanted to do, work, friends everything's is a bit different. I don't like the needy, vulnerable person I have had to be over the last 18 months. I want to dig my garden for 8 hours a day and not feel tired, i want to have my old life back ….but I can't have it exactly because i too have changed and need to reevaluate the new me, get used to her! 😛 writing this down though is a good idea, I clearly need to work on this and accept it and make the best of it, but as I say all this takes time and I'm not there yet. So let's just keep the reasons for my being cross between ourselves.:-) Keep asking questions, the more you understand the greater support you will be.
Love Helen

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