[eveParticipant]

Hi Dee

WE live in Deal kent,it is my husband who has Kappa Light Chain Myeloma,
He is treated at Canterbury,He was diagnosed after many months of pain,and weight loss,that was August 2010,finally diagnosed February 2011 18 months on Myeloma Trials X1 which might be available to your Dad ,he finished Chemo, he has just had a Stem Cell Transplant at Kings in London.:-) That is a long way off for you,and you are just better thinking about today.I am only telling you to show you,there is hope, 🙂

Take one step at a time,your Dad is in the best place to control his symptoms
If you need any advice,just let me know,Eve

[ilovemymumParticipant]

Hi Dee,
My name is Rachael, my mum was recently diagnosed and I understand its very scary. If you ever want to ask anything (although I am only just learning it all myself) feel free, I have shed bucket loads of tears some days then feel really positive on other days. Keep strong and look after yourself as this is the best way we can help our parents I think x Lots of hugs and love Rachael x x x

[dee4894Participant]

Hey :). Thank you so much, I'll be sure to ask questions and things. I'm sorry to hear about your mum. I try hard not to cry at all because it just gets me down, it helps to just do bits around the house and not think about awful things.
Lots of love to you too.
– Dee

[dee4894Participant]

Oh wow, I had no idea there were different types of it.. Though the doctors didn't really tell us anything so it's obvious that we won't know anything.
My dad would have to go to a hospital in Canterbury if his kidneys dropped below 20%, or something. I don't know if there are more than one but, yeah. Heard about Kings. That's where they sent his bone marrow sample to I think. Also I over heard a family saying how awful Medway hospital was and how they were going to get in contact with Kings and find better doctors etc. Which, I guess is fair enough.
That's an awfully long time to not know what was wrong, I'm sorry you had to wait so long to get an answer.
I don't think my dad ever wants to do trials. We watched The Big C and he said how if he ever had any treatment, he'd want to make sure it didn't do anything crazy, like, he'd want to be sure of what could happen.. I dunno. That didn't make much sense..
Thank you Eve, :).
– Dee

[tomParticipant]

Hi Dee

I also am 56 (57 July) I was diagnosed with MM in jan 2009, I have had CDT as front line treatment then onto SCT in December 09, Now back at work (light dutie's) and doing great 😀 It aint a walk in the park this MM trip but would I do the same treatment again ? well I have to answer a big YES as at the moment it has given me over two and a half years of remission and am drung free 😀

Good Luck in your dads road to remission and hope its not too bumpy.

love Tom "Onwards and Upwards"

Ps a few of us are on Face Book if you want to catch up with us 🙂 xx

[dee4894Participant]

Hi Tom 🙂
That made me smile! I'm really happy for you. I hope you can continue as well as you are now.
Thank you for the kind words. They're all really appreciated. It's so good having people being supportive to help soften the blow of all this.
– Dee

[VickiParticipant]

Hi both,

Not sure about the tummy issue but I see Ali's mum had something similar so it must be ok. Re the constipation thing, I get the impression from our consultant meetings that they are always interested in whether they are going too much or not enough! We've tested a couple of different types of laxatives but I reckon the one in an orange packet that you mix with water is the effective but I understand does not taste very nice. I know col has had problems with haemorrhoids when he hasn't been which can sometimes cause infection/temperatures (amazing what they check!). Touching wood Colin has been quite well this week, work twice, we've been out with friends for a meal (not too long) and a bit less sleepy; still tired by 8pm though.

We have the consultant tomorrow to see if he can start treatment again, he's been off for 3 weeks now so his head is less swim-my and he says he feels quite normal! For once it has been nice to try to forget this mm thing, as if! 🙂 Colin does still have up and down moments with food, and something helene mentioned about spicy food and it burning, Colin had that. Which is odd as I thought spicier the better. I have come to the conclusion that some of this is real trial and error. He's gone off cake a bit now and more into tarts and pies. His appetite is quite good. Fingers crossed for our appointment tomorrow ,they might be reducing his medication. We'll see

Take care Vicki & colin x
And it's raining.

[VickiParticipant]

Hi dee,

I'm really sorry to hear that your dad is going through it at the moment. You don't say how old you are but I can assure you it doesn't matter, young or old, when you see someone you love in pain or Ill it is a real worry and we are all the same. It is frightening especially when you don't know anything about the condition. We didn't and had not heard of it until diagnosis and then I read everything I could to try and help Colin, stick with this site at is is helpful, there is a nurse to ring, info leaflets and people like me who can answer questions if we have experience of the things you are experiencing. Have faith in the medical team, they will help your dad. Colin my partner is having chemotherapy tablets as part of his treatment and his hair hasn't fallen out. Remember though that even if it does he's still my colin and your dad will be the same, just looking a bit different for a while. Colins hair will come out when he has SCT, so I have promised him a bit flashy hat! The medication is daunting but remember it will make your dad well again. Take each day as it comes and do not think too far ahead. Hopefully you have support from other family members and you can all work together to help your dad.

Any questions please ask:-) Vicki

[AliParticipant]

Hi Dee

Im Alison. My Mum was diagnosed last November, we had never heard of Myeloma. I completely understand how you feel right now, my Mum is my best friend as well as a fantastic Mum. She was 57 when diagnosed.

She opted to be on the Myeloma 11 trial and has had 5 cycles of treatment (has not lost her hair) and is waiting now for her stem cell transplant (will lose her hair – gorgeous wig found and scarves purchased). Apart from a few blips along the way shes says the treatment has not been as bad as she feared, and apart from feeling very tired at times she feels loads better now than before her diagnosis. Please dont go looking on the internet about Myeloma, trust the information here on this site and if you have any questions someone will pop along on the forum with help and advise. Please keep in touch….best wishes to your Dad ( and you ! )

Ali x

[foxy555Participant]

Thanks Vicki

Good luck for tomorrow, let us know

Ann and Pete

xx

[VickiParticipant]

Hi ann,

Hope Peter is feeling a bit better and some food is starting to taste good. Colins latest is best of british, roasts, cauliflower cheese etc, and moved away from cake and a little less on the milk shakes!

See my post on treatment, the next stage is starting we think. Stem cell harvest next. No more treatment on cycles for 4-6 weeks. We are a bit scared and apprehensive at the moment. Less buoyant than last week when the pp results came in, although we should be grateful for that. Just a bit unsure about the next bit. Feeling this mm journey is never straight forward and always a roller coaster!

Vicki and Colin x

[dee4894Participant]

Hi Vicki 🙂
Thank you. Of course I'd still love my dad even if he did lose his hair but it would just make this all more real, since it's all happened so soon and it hasn't sunk in, and I don't know if it ever truely will.
Though, we found out yesterday the treatment he is having with side effects etc and prognosis. Though I think it was just average. The chemo drug is Bortezomib (velcade) and he's taking steroids too. It starts on monday and then he'll be discharged I think. That drug means he won't lose his hair, it's not even a posibility because the Dr or Registrar (sorry, I don't know) didn't even tick it. Prognosis without drugs is 1-2 years, and with is average of 5. I think that's average, right?
Also, I'm 17 and 18 in early August.
– Dee

[dee4894Participant]

Hi Alison 🙂
Thank you and good luck to your mum, I hope she continues to be well.
Yeah, I knew I should join a forum type thing because then it's real people rather than statistics and stuff.

—–

Everyone,
Thank you to all of you, everything you say is so sweet and I am so grateful. Please don't be disheartened if it takes me a while to reply or I only send a short one, as I find it difficult to think of lots to say except thank you, etc. I don't feel like it's quite enough but hopefully you understand.
I tell my dad all the lovely things you say and it seems to give him some hope about the future. So thank you again. I truely wish you all the best.
Lots of love.
– Dee

[VickiParticipant]

Hi dee,

Hey glad to hear the treatment has started and I am sure soon the mountain which looked like everest will soon look a bit more like Ben Nevis! The averages you talk about are the same as we were told. I asked about those as it didn't seem long. It was explained that some people live 20 years or more with this condition and others sadly only a very short time. It sounds to me like they are cracking on with your dads treatment so he will so be feeling a bit better even with the side effects! Who knows with the hair, your dad might like a new image!. I read Helena post earlier and she has gone blond but I very much doubt Colin will do that, he has grey hair!

You are very young to have this type of worry. I'm nearly 46 and sometimes it feels like the world is on my shoulders! Ask any questions you like, if I can help I will.take care and hope your dads treatment goes well. I've read lots of good reports about velcade x

Vicki 🙂

[AliParticipant]

Hi Dee

I know its all such a worry but as time goes by it does get easier to cope with. My Mum has wanted life to carry on as normal and im learning not to fuss about her all the time. We have our nightly phone conversations about what we have had for tea lol ( my hubby rolls his eyes at this) and dont even mention the Myeloma, and that was all we could talk about in the first few months.

I dont want to think of the prognosis now, just want to make every moment with my Mum count. I feel its given us a chance to really show how much we mean to each other (tears in eyes typing this).

Be strong Dee – you can do it:-)

Love Alison

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