I am sorry you have not had a reply. Where indeed do you start? Whilst I cannot advise you about your husbands condition I would just like to say that I too am going down the AMY  path with LCDD- Light Chain Deposition Disease My kidneys are affected & I feel lucky  not to have any other organ involvement yet. I am sorry th…[Read more]

Yes, chemo is affecting my appetite, no desire for cho…[Read more]

Your positivity is extremely refreshing,  I am far from positive in fact very glum about it all I’m afraid.

Heart attack?? – unbelievable, its prompted discussion in our house I can tell you. I hope they get to the bottom of why etc……

Your breathless symptoms are interesting. I too am really struggling, the slightest exertion re…[Read more]

So sorry to hear your latest news. Also sorry that I have only just seen your post….

I seem to be going down the same path as you too. I fully expect my kidneys to have taken the brunt of all this chemo, and wonder whether my SCT will be postponed as I believe yours was?? I am also visiting the NAC mid December for my 6mthly check up.…[Read more]

I do feel for you, if your were my dad I would not want to see you going through this given your age.  It is such a finefield.

You appear to be on the same dosage as my…[Read more]

I do feel for you, if your were my dad I would not want to see you going through this given your age.  It is such a finefield.

You appear to be on the same dosage as my…[Read more]

I do feel for you, as indeed if your were my dad I would not want to see you going through this given your age.  It is such a finefield.

You appear to be on the same do…[Read more]

SUE:-

DEX WAS 2mg x 10 tablets  x 4 days = 80mg on weeks 1 & 2.  WEEK 3 free.

DEX NOW 2mg x 5  tablets  x 2 days = 20mg on weeks 1, 2 3 & 4.  WEEK  5 free.

CYCLOPHOSPHAMIDE=  was/ still is 1 x 10 tablets weekly @50mg so 500mg in one dose

VELCADE 2x weekly  on wk1 & 2  NOW 1x weekly on weeks  1,2,3, & 4 week 5 off.

Hope that h…[Read more]

Megan – thankyou, hope all is well for both of you too.

Sue- Whatever side effects you encounter it may be worth keeping a record, and inform your medical team. At the end of the day we are all trying to find our individual balance re “Quality of Life vs Treatment” which enables us to emotionally & physically deal with both the disease &…[Read more]

Tthankyou, hope all is well for both of you too.

SUE- Whatever side effect you encounter keep a record, and inform your nursing team. At the end of the day we are all trying to find the balance re “Quality of Life  vs Treatment” which enables us to both deal with emotionally and , physically.  This post details the bad and now the…[Read more]

Just a quick update, as its only fair I should post on this site when things are on the up too……or in my case more bearable.

Having now been on my new regime of a lower dose for the past 3 weeks, so a total of 5 weeks with the 2 weeks off everything. I am much improved as is the household in general.

My new regime has been much…[Read more]

Finn- Having read various posts on here & Beacon site, I literally begged my consultant t give me some sleeping tablets- or something/anything to enable me to sleep. Before all this started, when I considered myself to reasonably well I enjoyed a 9-10hr sleep every single night…..So you can imagine my frustration now. Thank…[Read more]

Interesting reading as to how you coped & thankful I am not alone. I really was beginning to think that I was being terribly “mard” as we say around here….. Will ask my consultant about the Kidney damage too – so far my kidneys have not been affected greatly  EGFR 39-42% slightly reduced from previous rea…[Read more]

“I  would like to do a car boot event to raise the awareness and funding for Myeloma UK.”

OH Amanda, think I just focused on & saw the words “CAR BOOT” and not charity event – oops!

( There I was thinking I was getting a little more focused with less meds in me this week……..Sorry to rant on.)

I am sure you will only encounter the finest of…[Read more]

Firstly how noble. I too am currently giving my entire wardrobe away to charity……Have also got our local animal rescue centre collecting the rest……..

Have boxed up all that I really can live without, it wasn’t hard. Cannot believe how much clutter we surround ourselves with. I too have quality clothes, etc……..Think my reason for…[Read more]

Sharron

BACKGROUND- Diagnosed with LCDD April 14 after initial tests concluded no Myeloma, BUT MGUS. Also  CKD stage 3A Referred NAC May 14 –  NO AMYLOID. LCDD is treated as MYELOMA. NAC London have recommended for me to have 6-8 cycles of VCD followed by an Autologous SCT.

Two cycles down, and I can and am no longer prepared to continue down this…[Read more]

I asked the very same question today whilst having my week 2 Velcade injection – “What else can I expect?” and is how I am feeling normal?

No swelling with  a 43% kidney EGFR. Totally exhausted which I can’t nderstand as surely the 80mg total DEX over 4 days wk 1 & 2 would give me a much needed energy boost. (and here am I am on the net groc…[Read more]

Its been some time since I was last visibly active on here.  I have needed some time to digest and accept all the changes that have been forced upon me. Thankyou to each and everyone for your kind words and encouragement despite me not replying to the last post. (sorry)

So here’s the latest. Had my 50th,  got engaged, went a…[Read more]

Glad that you have now been able to accept the likelihood of a SCT. We are both in the same boat as it were. I too have increased protein leakage with my Light Chain Deposition Disease. The NAC calculated 3.5g. My potential treatment of HDT & SCT is fast approaching, w/c 11Aug. I managed to negotiate a postponement for the whole of July,…[Read more]

I am smiling at the thought of 150 Primani Pants in all their glory !! Only a fellow girly would do that…….LOL

Once again how nice to hear from someone who says it IS doable and that you have had a positive result. As for the ice, I’d would probably be the one sucking on it for over 20mins. During and after my rather lengthy i…[Read more]

Megan- thank you, I too am currently in receipt of ESA, and have been since my initial diagnosis of CKD since last June> as its contribution based they have pretty much left me alone, but I guess it will all change in Sept when it runs out, as they will have paid the max of 365 days. As for the SCT its good to hear, as Eve has said that its…[Read more]

Thank you for your thoughtful and sensitive post which gave me some much needed comfort. I am also sorry to hear about your husbands difficult journey…….

Sorry I haven’t replied sooner. We are all getting to grips with the enormity of the decision ahead. Also beginning to worry about finances. I plucked up the courage to ring M…[Read more]

I do now  have some more info and clarity regarding my diagnosis after my visit. After a highly organised and busy couple of days, a SAP Sca…[Read more]

I am a 49yr old woman. My journey began on 13 June 2013. I have recently had a definite diagnosis of Light Chain Deposition Disease, which sadly has much less information out there than myeloma and/or AL Amyloidosis.

I became quite unwell after a bout of flu in Dec 12, followed by a difficult house move and far too much DIY.  I even…[Read more]