[VickiParticipant]

Hey Tom,

How’s the treatment going? You are amazing! You are a real star and we all need a dose of your positivity…..roll on long remission to you!

Helen, great to hear you are out the other side….result 🙂

Jean and frank, hope all going wll for you guys. Got to get all the messages in as it’s so hard to log in:-)

Vicki and Colin x

[VickiParticipant]

Andy

Hope you are feeling better after your stay in hospital…..soon to be back not the drugs to keep the mm at bay? Your thoughts in mm are always thoughtful,and sensible, and boy have you gone through the mill. A beacon for us all…..hope you have the holidays plan as you need more beer and sun to have a go at the pps!

Peter as a long remissioner…..is that a word. We look to you as that hope and light at the end of what can be a b dark tunnel!

Vicki and Colin x

[VickiParticipant]

Hi all

Apart from all of the other detail, eve, one of the messages that I did pick up was that slim is no longer being treated. I’m sorry to hear this as he has gone through so. Ugh, as have you in another sort of way. Wishing you both all the best.

Our experiences have been very positive and we have both been very grateful,for all of the support we have had from the nurses here on the forum, you cyber friends and the medical and nursing and consultant teams at the hospital. Myeloma is such a scary condition that can creep up unnoticed. It must be hard for those diagnosed so we all go through times of anger, frustration and the unjustness of it…..but we go on and damn well grab life by the neck! And try to enjoy it.

Best wishes to all…..it’s a hard road 🙂

Vicki and Colin x

[VickiParticipant]

Firstly David not impressed with the first diagnosis of ‘nothing to worry about!’ Glad you sought a second opinion! When Colin was on revlimid he had to do an injection every day to keep the flow of blood going. I think revlimid side effect is blood clots. He was just lucky that time he was on it 🙂

Hope things are going better for you now

Vicki and Colin x

[VickiParticipant]

Hi Tom,

Jus wondering how you are doing….hope the holiday went well and you are feeling ok? :-). Still struggling with this site as it takes 10 goes to get in!

Hope all ok with you jean and frank 🙂

Vicki and colin

[VickiParticipant]

Hi there

Glad to hear Charlie got through the sct, that’s great, shame about the hiccup and collapse! Hope all is well now? Can’t offer any information about the hospital but wishing you all the best with your move and Charlie’s ongoing improvement x

Vicki and Colin x

[VickiParticipant]

Hi there,

Just logged in to say hi and wish you all the best with the treatment regime. My partner Colin was diagnosed in October 2011. Like Megan we are still careful about what food we eat and I still get nervous if we have prawns! Colin had a transplant in November 2012 and thankfully so far still in remission.

It’s a tough road for the sufferer and a tough road for the supporter, in another way because there are time when you feel helpless,but keep focussed and do try to get some rest. It’s a tiring road

Vicki and Colin x

[VickiParticipant]

Hey Andy and Helen

Great to hear from you….despite the technical problems you are often in my thoughts. As on other posts we have been busy relocating Colin’s mum nearer us. We are hoping for a holiday abroad soon, Colin’s next appt is 5th February so if all goes well there we are off…..somewhere pending travel insurance issues and as long as the doctor says ok. Sorry you are on another treatment Andy but you’re doing great and obviously doing lots….

Helen, take your time back to work, wits the rush 🙂

Vicki and Colin x

[VickiParticipant]

Hello all

We too have the log in troubles…..if that we the only thing eh! Not been on for a while as we are moving Colin’s mum down to live closer to us…..to tired to do too much typing tonight and Colin is snoring to my right! 🙂 just wanted to say hi all and hope you are all still battling on 🙂

Where’s that sun!

Vicki and Colin x

[VickiParticipant]

Hi all

Thank goodness I’m not the only one with logging in problems! First of all, happy new year all. Apart from the login in issues we’ve been busy. Colin’s mum is moving down close to us and so we too have been doing the packing, and all the other things that go with it! D day is this next Monday so fingers crossed.

Tom hope you have a great holiday….we too are trying to buck up the courage to go over seas….anytime soon as long as Colin’s remission continues. We hope you are still feeling ok Tom and you and the young bride enjoy your hols. You’re probably back by now given it’s taken us so long to long on!!,

Keep well all

Vicki and Colin xx

[VickiParticipant]

Hello Carole

Merry Christmas! Ultimately the decision has to be yours. My partner Colin had the transplant. He had this in November 2013. At the time it was hard going andnthere are days now when Colin gets anxious when he thinks but to it. However we took the view that we would grasp everything to give him as many chances as possible! I spend a lot of time worrying about remission times but please think about giving yourself every chance including the sct…..it was frightening and we were scared no doubt about that but we are still here 🙂

With best wishes and good luck

Vicki and Colin x

[VickiParticipant]

Hi nick

Welcome to the forum. My Larner Colin was diagnosed age 56, no interim just straight into mm. One back bone fracture which was amazing given the level of his light chains (31000) and pps were 17. It was a real shocker! Luckily no kidney damage. Colinnhad 7 cycles of revlimid, cyclophosmahide and dexamethasone. It was tough as he had lots of infections……we were at the hospital every month! He elected for sct( we had to have 3 goes to get the stem cells out and thankfully just got the 2 million required! He has been in remission since November 2012 and we are hoping and praying for much more. We were scared about all of the treatment as it all sounded daunting on the leaflets, however some how we got through it.

Good luck to you and your treatment. Hopefully you can sail through with a long long remission 🙂

Vicki and Colin xx

[VickiParticipant]

Hey all

Well done chris glad you are doing ok! Hope you are continuing to feel well. Colin still gets very tired but am convinced that’s to Do with the fact he’s on heavy duty pain killers for the initial back fracture. That’s got him down as he gets confident, does a lot and then is wiped out for 3 or 4 days. For me the worry is mm on the return! No ones mentioned re vaccination, I did ask and they said not necessary? Colin finished all the anti virals and antibiotics early may and wasn’t given anything else. This condition is so weird ; he was working 12 hour days for 3 days out of 5 but is then wiped out for a few days. I do wonder what normal really is. Like last night we couldn’t go out as col was so tired, then today he looked really well, went out for lunch and then felt off when we got back and now in bed! Is this normal? What’s it like for you? How’s Tom doing jean?

[VickiParticipant]

Hi Tom,

I’m having real problems logging into the new site. I’m so sorry to hear your news…..your drug free remission has always been something I think of when I get down! You are a real positive guy so here’s hoping for you that that next phase of treatment will whack mm into touch again! Tom you have clearly not been drinking enough vodka for this to come back! It’s an absolute bxxx however if anyone can have a positive frame of mind and crack on with it, you can 🙂

Has the numbers been on the rise for a while as a slow burn increase? Best best best of luck with this next phase! Our consultant said there are loads of new treatments that can suppress this condition!

Vicki and Colin xxx

[VickiParticipant]

Firstly hey chris how are you doing post sct….Colin still gets very tired but qualify that with doing too much and then wiped out for three days!

Hey all welcome if you are new to the site and hi to the old stagers. This is really a tough road to follow for supporter because you feel helpless and sufferer because its a tough lot of treatment. We felt like life had come to an end, and sometimes still do now but we are battling on and trying to make a difference by valuing each day. It’s not easy to stop the dark thoughts but they are counter productive. Look after yourselves and keep well 🙂

Vicki and Colin xx

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