[froghallParticipant]

Hi everyone,

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 eventually decided I needed to register with a doctor in my new home town, So in May 13 I went to see him after almost 5 months of bone pain and generally feeling exhausted rather than under the weather. I was immediately referred to a Haematologist and Nephrologist. All the relevant tests ensued over the course of a few weeks. Kidney & Bone marrow Biopsy, Kidney ultrasound, full Skeletal survey & lots of bloods. After my 2nd Kidney biopsy in Feb of this year, the LCDD was found.

FACTS:- Proteinuria of 2.3g, IgG kappa Para protein, Anaemia, Chronic Kidney Disease stage 3A, (41-51% EGFR)MGUS, NO MYELOMA PLASMA CELLS 2%. Recent Echocardiogram was ok, only revealing mildly depressed  Simpson’s LV systolic function, normal structure & function, ejection fraction 50%. (don’t know what heart stuff means)

So here we are today, exactly one month after my “Light Chain Diagnosis”. My appointment with the National Amyloid Centre is tomorrow and Thursday. My head is filled with questions and dreading them finding more…..

My Lovely nephrologist has already indicated that my treatment plan will more than likely include chemo, which my London visit will determine after further investigations including a SAP scan.

I feel I am in a thick fog, I will probably be having chemo, but I havn’t got cancer. Very few people understand what I am talking about. I now say, I have a very rare blood disease, to which they reply, like Leukeamia?.. Am trying to focus on the positive of which I realise and accept there are many reasons to feel grateful. Unlike so many people on this site, I am actually ok…….I do not have Myeloma . My Nephrologist has already indicated that the prognosis and outcome is far better than that of someone with Amyloidosis/Myeloma.

So I now await the results of all my tests at the Royal Free……….

So if anyone out there has any experience of the above, I would love to hear from you, and if nothing else at least I have highlighted another Disease connected to abnormal proteins.

Oh and I so desperately want some R&R, sun, sea etc……before chemo starts. So at least my energy levels will have been shored up for whats ahead. Any advice as to going away before, during or after treatment would be really helpful.

Many Thanks S

 

 

• This topic was modified 10 years, 5 months ago by  froghall.
• This topic was modified 10 years, 5 months ago by  froghall.
• This topic was modified 10 years, 5 months ago by  froghall.
• This topic was modified 10 years, 5 months ago by  froghall.

[eveParticipant]

Hi S

Light chain deposition disease???

I must say it’s a new one for me,so I can understand why you feel so isolated,seems to be a mixture of Bence a Jones light chains plus amyloids .
I know from my husband his IGg bence jones light chains,show no protein,but it effected his kidneys.with Amyloids there are only 600 cases a year and only hospital is the Royal free hospital in London.

I do hope you find someone who can help you more,have you tried Ellen on the free number above????
Eve

[froghallParticipant]

Thankyou so much Eve for even replying. I do not feel quite so isolated as\I did when I originally posted. However, I did mention to the consultant at the NAC yesterday, that no one had replied to my post….

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 Scan, ECG, Echocardiogram & 6 min walking test to evaluate my physical finess, it has now been confirmed that I do not have any AMYLOID deposits. However my LCDD deposits go hand in hand with Amyloidosis, and are treated in exactly the same manner. I was rather taken aback when a stem cell transplant was discussed as a treatment option. Something which I have not given any thought to at all. Given my health and age, this seems to be the  better route as opposed to the usual chemo combo. In truth I have browsed through the booklet which was given to me about SCT and it has scared me half to death.

At least I have some time to digest what is what and the path I decide to take. During the consult, it became quite clear that LCDD is much rarer, but non the less equally as destructive to our organs. So if anything, by me posting it will have raised a little more awareness of this complex & extraordinary journey I appear to be on.

I would like to point out that the staff/team at the NAC were fabulous, and each and every patient was treated with so much dignity and kindness. There were some very poorly people in the waiting area, and each of us have a truly unique story to tell.

Sharron

 

[eveParticipant]

Hi Sharon

It does sound like a very rare condition,and you do need to find people who have the same condition,for support and how they cope with it,do ring Ellen if there is some one else with related conditions she might be able to put you in touch with them,plus if you are going to have a SCT you have to the right site for info.
I would also try the American sites as I find Myeloma Beacon very helpful and up lifting although they are way a head of us on treatment for the mass of Myeloma patients.might be useful to you.

I know I am having difficulty with access to this site,so other people must be having the same problem!!!!,so do not post,and my husbands journey on this roller coaster is on the way down ,so it’s all bad news,not good for people who need a boost and have just started there roller coaster ride.

SCT is doable as are lovely Tom would say,from a carers point of view it’s not nice to watch a loved one feeling so rotten,but it’s only for a very short time,they knock your nuets down to 0.00,give you your SCells back,infections are dealt with,then a small period when you feel really ill,then you start to recover. If you go into previous post,some people have done a day to day experience of it,the only one I can think of is David, SCT is an every day thing,treat it as major surgery on your bloods,so expect a slow recovery period.

Anyway a warm welcome from me,anything goes on here ,we are all on this roller coaster ride,so know how you feel,with all it’s highs and lows,it’s a very lonely place when you are riding alone.

Keep in touch. Eve

[froghallParticipant]

Hi Eve,

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 Macmillan advice line, to basically be told sorry we cant help you as you haven’t got cancer and there are other people who have got cancer trying to get through. Yes, they really did say that, and Oh boy,  was I shocked and hurt. I also had to explain once again what LCDD is, and that the treatment is exactly the same as myeloma, but it made no difference. I’ll see what my lovely oncologist and cancer nurse have to say at my next appt.

Needless to say my journey is going to be one hell of a ride……….

I have actually bookmarked both Myeloma Beacon and Daily Strength, each carry a  little info on my condition, thankyou.

Sharron x

 

• This reply was modified 10 years, 5 months ago by  froghall.

[meganjaneParticipant]

Hi Sharron,

Welcome to the forum, sorry you have had to join us, especially with such a complicated diagnosis. I know from experience of my husband Phil’s diagnosis of MM how complicated it can be to explain to people so I can only imagine the difficulties you have explaining LCDD.

My husband was diagnosed at the age of 43 and had his SCT at the age of 44 after 5 months of treatment. Although the SCT process was not pleasant and Phil unfortunately caught a bug while he was in hospital so ended up staying in for 24 days as Eve says it is doable.

I do hope you find some help to sort out your finances. We applied for Phil’s benefit by ourselves but the form was very long and complicated and due to Phil’s age he only receives the ESA benefit, he has not tried applying for anything else. You could maybe try the local Citizens Advice Bureau?

Megan

[eveParticipant]

Hi Sharron

When you are ill and trying to come to terms with everything it’s hard to be told,”sorry you have not got Cancer we cannot help you”. Did you laugh or cry?????

I would go to your local CAB,they have experts who will help you fill in the form,get a letter from the hospital for support to your case,jump over the first hurdle,and appeal if you fall over!!!!

They do not make life easy!!!
Red tape and paper work,I think,that they make life difficult to make you go away,just my opinion.
Have been sitting here this morning,phoning,and getting deliveries ,fro my husband to come out of hospital,wheelchair is the biggest problem at this moment,they will supple one weighing 18 kilos,husband weighs 68 kilos,and they expect me to be able to push him,up and down a ramp,to get out,65 with bad back unable to lift 18 kilo in to car,plus ramps are heavy,good fun,will have a 4 week wait for assessment and delivery of a lighter chair.

I have had my moan,Eve

[froghallParticipant]

Hi,

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 doable…..I really am avoiding looking in to the procedure at the moment. I’ve been pretty proactive but this has thrown me…..

Eve- I think I’ve got problems. I’m 16 years your junior, and find it difficult to carry my 5.5Kilo Shih Tzu around, let alone 18kg of metal. I totally agree it is all red tape, and sadly so many deserving people give up. I did actually cry yesterday mainly with the frustration of having to justify my ill health once again….

As you both say CAB may be the way forward. But given other peoples difficulties claiming I am going to now wait until my ESA finishes before rocking the boat. In the meantime I am gathering hospital letters etc to put in a claim to my previous employers for an early release of my pension. Every little helps.

Oh and I’ve messaged Ellen, re LCDD. Maybe its time for inclusion in the related conditions section??

Best wishes and good luck to you both. Sharron x

 

[rebeccaRParticipant]

Hi Sharon, just wanted to say hi and don’t worry unduly about the SCT, I had an SCT over Xmas with a kidney function at the time of 28% egfr. SCt was not pleasant but doable, was worried about infections re kidneys but all went ok – a few ups and downs – and am now back to normal in all aspects with a slightly better kidney function after it (around 32%). I’d read a lot about the SCt, everyones experiences etc and to be honest it’s a bit different for each and everyone of us so read up but recognise it might not be like that for you. I was so terrified of the “runs” and dirty washing I bought about 150 pairs of knickers from Primark with a view to throwing them all away – needless to say I have nearly them all stashed away at home still – and as I bought the cheapest and a slightly too small size don’t want to use them! I didn’t use ice in the mouth as everyone recommends so as not to get mouth problems and I didn’t get any at all – so when you read that people sucked ice for 20 minutes (and that takes some doing, I lasted 1 minute!)and they didn’t get mouth problems well neither did I? The unpleasantness is relatively for a short period of time so you will come out of the other end and say as we all do “it’s doable” because it is and soon forgotten when you start to recover. Good luck

Rebecca

[froghallParticipant]

Hi Rebecca,

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 initial kidney biopsy I had some sort of panic/claustrophobic episode given the position I was in, and how many samples they took, (approx. 8). I naturally asked for ice chips, which threw them I can tell you. So there I was face down, being fed ice. Rather like when you go into labour, I even employed the birthing breathing technique to try and hold it together. Maybe I’m just a wimp. I do however currently get mouth ulcers, and throat infections from nowhere, maybe part of the anaemia? So fingers crossed for when the time comes.

I was only thinking last night, back in the dark ages,  for me c1998, I would have trotted down to the local library for a medical encyclopaedia in the hope all these rare conditions would have a mention.  I certainly feel that often I take the internet and its wonderful research tool for granted. I find myself Googling on daily basis all manner of things, and who would have thought we could have instant cyber chats, send messages and hugs too. Simply Marvellous.

Gosh I am sounding more cheerful by the day……Sharron x

Many thanks Rebecca, and long may you continue to keep well and improve.

[VickiParticipant]

Hi Sharon

My partner Colin was diagnosed with mm in October 2011 with a transplant in November 2012. He has been in remission until June 2014 where his lights chains appear on the increase……we are hoping its a blip.

Having read your posts you do have a really complicated condition but do remain positive. Hard but it’s the only way…..can’t help you with anything medical but just wanted to chip in with some encouragement 🙂

[froghallParticipant]

Hi everyone,

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 away…..had a lovely July.

8th August discussed with Haematologist future treatment plan. Started VCD 12th August. 6 cycles ahead.

Got through my first week without too much of ado…..realise it will most certainly have its culmulative effects. Noticing a few changes. Mostly my inability to concentrate or type. I start a sentence then lose the thread, and its week 1. Plus I am very very tired

Velcade injections 2x weekly on week 1 & 2 subcutaneously. Have a daily Fragmin injection alongside Velcade daily x 21 days.

Dex 80mg  x 4 days week 1 & 2

Cyclophosphamide 1x weekly over 3 weeks at 10x 500mg along with various antibiotics etc.

Apart from the first day taking Dex, whereby I had very little sleep that night, I have since been in a haze, rather as if I have had one to many gins without the tonic. Don’t trust myself to venture out in the car alone. Feeling very tired so early on…..no idea if this is normal. Understood I would get an energy boost?

How soon can I expect the “moonface”? Have very bright red cheeks. Oh and pins and needs every so slightly in my feet, probably the velcade. Do not want Peripheral Neuropathy. Have carpal tunnel in both hands so am used to dead arms in the night……

Al other stats are stable. EGFR 43%, HB 11.2, creatine 110 etc. Kidney consultant was pleased how well & fit I appear to be…….

BUT I’m now at the mercy of all these toxins, and their punishing effects on my system.

Despite LCDD not being widely diagnosed or much info out there, I will try to post as hopefully it might at least help one other person.

So its time for a nap now, have managed to wash my hair, and a few emails and that’s me done for the morning.

Sharron

 

 

• This reply was modified 10 years, 3 months ago by  froghall.

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