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 🙂
Tom,
Thanks so much:-) , positive as ever. Thanks for the positive, honest thoughts. Glad to hear things are going so well,enjoy your weekend, even if the weathers rubbish. Good excuse for some good hearty food and a couple of glasses of the red stuff……or vodka for you I seem to recall from your previous posts.?
Thanks for the good wishes, I'm sure there will be more posts soon!!!:-)
Vicki and Colin x
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
Hello only me,
I am so sorry to hear your news. I can only imagine what you and your family are going through. My mum is my best friend, confidante and stabilising influence. My heart goes out to you and your family. I know these are only words and will do little to help but I hope they will help in some small way. I hope the medical teams can do their magic,but can understand how it must look for you. It can be so hard to do the smiley face thing when really there are times when you want to cry your eyes out.
All the best
Vicki
Hi Stephen,
Wishing you all the very best with your SCT. We too live in the west country (Gloucestershire) and will be visiting south mead soon too, your summaries have been extremely useful. I hope it all goes well for you. If you are well enough to give any further updates that would be great. We have been told today that Colin is going forth for SCT. They checked his bone marrow today ouch! Makes matters worse just got a phone call to say that he has to have done again due to sample being poor ……ouch ouch!,
We are worried about the SCT, what support and information did you get before hand, apart from the book. Looks like col will have a problem too with regard to harvesting, we are told that prelixafor (sorry spelling) the thing that stimulates stem cell growth is not available in the south west so we are keeping our fingers crossed he gets enough.
Any info you can share will be great and best best wishes,
Vicki and Colin x
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
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.
Hi Rachael,
Glad your mum has made some progress and she is feeling a little brighter. Whilst dealing with this condition as a family member doesn't get much easier, for me anyway, it always helps when you can see the patient getting a bit brighter! Don't worry about having 'moments', I have them a lot and go from being really positive to mrs doom and gloom, on the quiet. Still glad your mum is feeling a bit better and hope the treatment goes well.
Vicki and Colin x
Hello siobhan
I have read some of your mums posts and although never corresponded with her I can see from all of our friends on this site that she was held in very high regard. I cannot begin to imagine what you are going through, coping with helping someone through is hard but suffering this loss I cannot and do not want to imagine. Your mum sounded like a wonderful lady with a character. You and your family, I am sure feel a great deal of pride both in the way your mum coped and helped others.
Our thoughts are with you at this sad time.
Vicki and Colin
Hi Alison
Just a quick note. Firstly wondering how your mum is doing and has she started SCT or any tests yet?
Also on a lighter note I assume you are an auntie again by now ………:-)
Vicki
Hi Rachael,
Welcome to the forum:-) My partner Colin was diagnosed at 55(up to now realised I have aged him a year! Lol). it was a real bolt out of the blue. He has had 7 cycles of treatment crd (cyclophosmahide, revlimid and dexamethasone) and thankfully up to now all worked well. He had one bone lesion in his back which was treated with radiotherapy. For your info if it helps, Colin has had several visits to hospital, either with temperature or general feeling of being unwell. Each time the hospital have been excellent (we live in Gloucestershire ). We were advised to get a digital thermometer so that we could keep an eye on the temperatures. I won't say we've got used to hospital visits but it helps when you understand a bit more about what is going on. We have read lots around this subject, never having heard of the condition before. Thoroughly recommend this site as the most reliable (others were very scary so stay well away from those). Any questions please ask!
Good luck to your mum and best wishes
Vicki and Colin x
Roy,Anne and family,
This is an inspirational story and your wife has clearly battled and is winning. Good on her!
I know what you mean about this mm thing being unknown! My partner Colin was diagnosed in 2011 October and it hit us like a steam train. We are battling on too and hopefully nearing an SCT shortly. One or two cycles more we reckon.Fingers crossed!
I have shared your story with Colin and we are both full of admiration……10k walk as well. That's what you call a fighter.
🙂
Best wishes Vicki and Colin x
Hi ann,
First things first you are right about the weather it is tipping down here and I think it's forecast for tomorrow as well! Turkey must seem a very long way away at the moment!
I can understand you might be worried about going to Spain but read the posts from perkeymite David either on your string or mine. He gave some really useful tips on travel. That said I don't think we've travelled for a holiday out of the county yet! Colin works in Portishead and that's as far as we've got!
I hope the heart issue sorts itself out, like you say one more thing to worry about. The travel insurance thing is laughable. I think there is an info guide on travel or travel insurance on this site so you might get something useful or some advice from them? Re the taste I am told that pineapple is very good at helping the cells in the mouth to recover following treatment. What about trying some of that? I can understand how stressful and pressurised things can be. I had a really anxious week last week so this news has been a real lift for both of us.
Take care ,and good luck with the next phase of treatment.
Vicki and Colin x
Hi ann and Peter,
How is it going for you guys, not seen any posts so a bit concerned?
A bit of good news for once. Colin and I went to see the consultant today. They have delayed his treatment one more week, neutrophils still low at 0.54. They are considering options to reduce his revlimid dose next month so we shall see, another appointment Friday week. However the good news and we were both very very pleased. His light chains have come down from 1300 to 850 (bearing in mind they started at 31000). His paraprotein has come down to zero! They are doing another test which I can't remember the name of but it's more specific to detect the little numbers of pp that might be knocking around. They said today he could have the SCT now but what they want to do is carry on a bit to see if they can put the mm into complete remission before they go for SCT. That's really great news considering he has really not been very well this cycle at all!
Hope Peter is finding some foods and Tastes that are more appealing to him. What cycle of treatment is he on now? How are you coping ann. I had a really bad week last week and was really really nervous before we saw the consultant today. Apprehensive about being close to SCT but if it's all worth it that's great 🙂
Take care and enjoy the forthcoming rain x
Vicki and Colin x
Hi Jean,
I don't understand what your consultant means about the protein, I thought that it was good that the paraprotein levels come down. In our case colins pp level has come down consistently each month, and our consultant seems very pleased with that. I thought the pp level is the cancer marker measure so I would have thought that it was good they were coming down in such a marked way. I am sure Ellen will be able to clarify.
By the way we went consultant today, colins paraprotein in nil (no trace!) , they are going to do another test can't remember the name, just to double check. The bence jones light chains also come down from 1300 to 850 so thats good as well, they are considering reducing colins revlimid too because it's knocking his cells down so low he is ending up in hospital too much. Thats the plan but he is off treatment for another week so we will npknow more next Friday 22nd. Good luck with yours
Vicki:-)
