[DaiCroParticipant]

[quote]Many thanks to all of you for the warm welcome. I am afraid all the terminology is still quite new to me but I will attempt to tell you where I am with my journey.

I was diagnosed with stage 2 IgA MM and multiple lytic lesions. I had been limping around all summer having been told I had mild osteo-arthritis. In fact, I had a fractured hip which was picked up on the skeletal survey on the day of diagnosis. On my report it states that my IgA paraprotein was 34 +3g.

After having a prophylactic nail inserted in my right leg I then began my treatment which was Cyclophosphamide, Thalidomide and Dexamethasone on a rolling 28 day cycle. At the end of cycle 1 my paraprotein was 19, cycle 2 was 5 and cycle 3 was 0. Continued with 1 more cycle and end of April 2012 stopped medication and told there was no detectable level.

I am now booked for Autologous stem cell transplant on 18th May. I have had all the preparatory tests and my cells were harvested on 16th April. My children are finding it very hard and my husband is coasting along not really sharing his feelings, but I remain positive so far.

Sorry if I have got the wording wrong but hopefully you can understand what i am trying to say.

Jacqui
[/quote]

Hi Jacqui,

Sorry I missed this thread till now… so a belated welcome from me.:-)

Although I am sure that you have had your moments overall it seems you have had plain sailing to this point and the success of your harvest augurs well for this and any subsequent transplant in the future.

To be diagnosed in November and to be induced into the Stem cell Transplant on May 15th is some going… six months from door to door.:-D

I am not surprised that your children are finding the whole diagnosis and treatment processes hard to cope with… and your husband's reaction is not unusual either. They are no doubt still in shock and the speed and success of your CDT frontline treatment, followed by your harvest procedures, will have left them with as many if not more questions than answers.

One moment they are having to process the fact that their Mum (and wife) has a very serious disease and the next (for it will seem like that to them) you are going into hospital for a process which could lead to some sort of normality… hopefully a remission of long standing… with a shed load of new treatments on the horizon which could change Multiple Myeloma from a terminal to a chronic disease. (I believe that the status will change when the medics can show that they can get a median of approximately ten years overall).

Of course there are no guarantees… there are pitfalls and complications and many of us here have had to face them… but so far, so very good for you… and I hope and pray that it continues for you in that vein.8-)

Try and keep a diary or blog of your SCT if you are able… there are quite a few of us here who have done so and it can be both therapeutic and useful for others following behind.:-)

Remaining positive is the key and you seem to have that in the bag… the rest will follow as long as you take it easy and don't push or rush your recovery… allow for a year to be back where you were before your MM journey started…. with a completely new set of stem cells driving you forward like a Duracell Bunny.8-)

Regards and best wishes for the fifteenth.

Dai.

[jackspratParticipant]

Hello again. Just a quick update. Now in hospital waiting to have my hickman line put in and then high dose melphalan. Mixed emotions as children left in tears yesterday but doing my best to keep thinking positive thoughts. Jacqui x

[jackspratParticipant]

Thanyou Dai for your positive and understanding message. I have just posted a brief update below. Jacqui

[VickiParticipant]

Hello jacqui,

I hope your transplant is going well. My partner Colin was diagnosed in oct 2011. You seem to have progressed very quickly! Colin is on cycle 7, pps at 1.2 and light chains at 1300. I know how hard it must be for your girls as it's really hard to stand by and watch someone you love be really I'll, not understand what's going on and scared of the outcomes. Colin is planned for an SCT but don't know when yet……

I hope your SCT goes well and you are soon well, happy and back to your normal self

With very best wishes and good luck,

Vicki and Colin:-)

[jackspratParticipant]

Hi Vicki & Colin
My treatment so far has been ok. My main problems came from Dexamethasone with tremors and general weakness being at the worst 2 days after stopping each cycle. I have tried to be positive about this as there is nothing I can do to change my affair with Myeloma. On just a few occasions it has been hard and I have sobbed but i always manage to pick myself up and dust it off.

The team at the hospital said it is amazing how quickly I responded to the initial treatment so I am praying it continues in that way.

I had my Hickman Line put in today which was no problem really. I have now been give the bitter sweet dose of Melphalan and I guess it is doing its work. Just as a point of interest, I read about a mouthwash called Caphosol and bought some for myself at a price. I also managed to get some on prescription from my GP. Every member of staff, who has seen that I have it, has said how good it is at making the symptoms of mucositis less severe.

Not sure if anyone else has any advice on this but thought it was worth mentioning.

Anyway I wish you both all the best on your own journey with Myeloma and to a SCT.

Jacqui

[AliParticipant]

Hi Jacqui

I was thinking about you this morning, I remembered the date you were going into hospital. I hope you are all settled and comfortable. Is the hospital far from home? I hope it is not so it makes it easier for your family to visit.

Well, you have had the Melphalan…so here goes. Like you say, you have responded very well to your treatment so far, heres to a great result from this SCT. Stay positive and focus on the end result.

Thanks for the tip about Caphosol, I will mention it to Mum. Anything that may help is worth a try isn't it?.

If you are able please keep us posted on how you are doing.

Take care

Alison xx

[AliParticipant]

Me again, I have just googled Caphosol, crikey "at a price" is right. Heres hoping Mums GP prescribes it! It sounds great though. Hope it works

Alison x

[tishwishParticipant]

Hi

My husband was given Caphosol by the hospital routinely, no questions asked. We can also get any drugs from our own GP with no questions asked at all. It is a very good mouthwash

Trish xx

[AliParticipant]

Hi Trish and Jacqui

I have just found out they have Caphosol it on the ward my Mum is going on. Thats another question off my list!

Alison x

[tomParticipant]

Hi Jacqui

I hope your still doing good, and trust me the crying is good for you it has been for me over the years (best in shower for the crying) but to be fair I think am all cried out 😐 am now the "Onwards and Upwards"

Love and Hugs

Tom "Onwards and Upwards" xxxx

[ElizellenParticipant]

Hello Jacqui, I hope all is going well for you.

Eliz
XX
X

[tmcParticipant]

Hi Jacqui
Thinking about you as you go through your stem cell transplant.
Love Teresa.

[eveParticipant]

Hi jacque

My husband is in Kings having hit SCT at this moment,just getting his platelets, dong fine but is having problems eating,has come out with a rash on his legs but it does not seem as bad as I expected.

I think he has his low points in the morning,build up of throat over night plus feeling sick and rushing to toilet,expects to be like this until the weekend then we should see some improvement.

We have been told it's the boardom that's hard,so bringing in scrabble tomorrow.best wishers Eve

[RobertmauriceParticipant]

Hello Jacqui
This is my first attempt at writing to the site I was diagnosed with MM in October last year. My paraprotein level reduced to zero after 4 cycles. I am on the Myeloma X1 trial which uses Revlamid instead of thalidomide. I also went in for Analagous Stem Cell Transplantation and had the collection in mid-April. I am starting the collection treatment next Tuesday (29th). Am prepared for the worst, hoping and praying for the best re side effects, particularly mucotitis. Otherwise feeling really great. Just been out on my bike in hilly Peak District. I am 67.

[jackspratParticipant]

Good Morning All. Just a quick update to let u all know that I came home.on Saturday following my SCT. So how was it for me? Well the results.show that I am in complete remisssion with no trace of paraprotein 🙂
I have to be honest and say it was certainly not plain sailing but i dont want to dwell on that because it is behind be now and acheived the desired results. I am so happy to be home although I still have very low energy levels. If anyone wants to ask any questions about my SCT I will be happy to answer but I will be very honest when I do. Everyone's journey is different I know. But the outcome has to be worth everything that has gone before. The sun is shining and life feels good. Who would believe so much could happen in just 6 months. Thanks for all of your good wishes and good luck to all who are in the early stages of their journey. Lots of love. Jacqui xx

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