[froghallParticipant]

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Hi Lynne,

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 they have found Amyloid Deposits in so many of his organs.  I too have now attended the Royal Free for 2 appts six months apart to have SAP Scans, ECGs, walking test, etc. etc. . He must be feeling very poorly, and I wonder why on earth this hasn’t been picked up before now. Whilst Myeloma is very rare, Amyloidosis & LCDD are even rarer- yet all come under the same umbrella. I have just finished my 6th cycle of Velcade, Cyclo & Dex. Yes its been tough but I have got through it, and am now awaiting discussions for a SCT. Have the Royal Free discussed an SCT with you both after the chemo treatment?

The Royal Free are terribly efficient. I feel very lucky to be under their care, and it gives me confidence for the future as should Amyloids deposit in my organs- I am under their radar as indeed is your hubby. I sincerely hope you also have a proficient local consultant.

Sadly I have yet to actually connect with anyone else who has LCDD. But as it all comes under the same umbrella I read and educate myself as much as possible in all areas- LCDD, Amy, Myeloma. I have watched some extremely informative videos on the Myeloma channel. Afterall I may develop any of these in addition to LCDD. I hope this helps, It is a very difficult/frustrating journey- accepting the diagnosis, coping with the treatment BUT you will eventually reach a calmer place. Another Myeloma buddy advised me to break life down into chunks. I find this helps, I no longer feel able to plan ahead, but try and deal with how I feel on a morning/afternoon basis. I guess I now live in the present and take pleasure from the small things in life……..

All the very best with your husbands treatment, Sharron

 
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[froghallParticipant]

Maybe its eating the elephant that’s causing my “chemical breath” problems….. I am sure you are right about the kidney bods. Back in June 13 when I started noticing a chemical smell,  we thought it was our gas fire, called out the gas man to test it, it was fine.  Then realised it was me!!

Yes, chemo is affecting my appetite, no desire for chocolate, and if I do have something sweet my chemical breath l worsens & if I don’t drink enough water .  I do try and drink at least 3L every day….

Hope all goes well at the NAC and that you get some answers

Sharron x

 

[froghallParticipant]

Hi Pat,

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 renders me breathless. I do carry excess weight, but its got much worse since I started on the Chemo early Aug. So I will be mentioning this  at my NAC appt. At my last apt they said I had no Amyloid. My diagnosis is LCDD, which apparently goes hand in hand with Amy. I am beginning to think I am going down the Amy path rather than MM. Do you mind me also asking if you have what I term “Kidney Breath”. Its like a chemical smell which only I am able to detect coming from my exhaled breath. I have recently had several oral hygiene appts , now use an electric toothbrush, nightly flossing etc….So I and my kidney consultant are at a loss as to what it could be or what I’m even talking about. My partner assures me I don’t smell. Its so pronounced during the night that I wake up. I also drink gallons of water, as instructed. Something else for the NAC list.

Maybe I need to take a leaf out of your book re taking too much on board, I think it could well bury one quite easily.

Wishing you all the very best, and I do feel for you…….please try and keep me/us updated as your own personal AMY journey is clearly relevant to me….

Sharron x

[froghallParticipant]

Hi Pat,

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. I hope your news is good and that the proteins are stable. Good luck with whichever dialysis path you decide on & Keep strong.

Sharron x

I

[froghallParticipant]

Hi Anthony, thankyou for adding your bit…….I think its important that we post honestly about our experience and people in similar situations can take from it what they need.

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 myself. Whilst the weight gain sounds significant, it is seemingly explained as being down to the steroids. So hopefully it will come off again. I was dreading putting weight on as I am a larger lady, having struggled with my weight since all my ailments kicked in….I cannot afford to gain anymore, given my health etc……As it is, my appetite has been greatly suppressed whilst on the larger dose, but I have now noticed I am eating more on this lower dose- something I most definitely need to watch.

Regarding depression, I am beginning to think its part and parcel of this sorry journey. If I admitted on here how I have felt on my dex down days they would have me committed! I joke not. I think I will discuss it with my consultant at my apt Fri.

We all naturally want to appear positive upbeat and of course continue the fight- but my goodness what a fight it is……I am already mentally discounting the STC in my head, given my current physical limitations. Ultimately the aim is for a longer remission but at what cost?

All the Best Sharron

• This reply was modified 10 years ago by  froghall.

[froghallParticipant]

Hi,

 

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 helps……I have been assured by my consultant that my original DEX dose was quite low, but nevertheless it didn’t suit me. Whilst this new dose is much more manageable, I am still having the extreme low moods and really do feel emotionally wrung out. Whilst fully aware of how it makes me feel I try and will myself to be pleasant to my OH and anyone else who happens to be in my path BUT my dex taking days and the subsequent come down days are proving to be emotionally challenging. Think I would be best living alone Tues – Sat.  Its hard enough dealing with being ill let alone losing the plot…….

Gill- well done to you for being understanding with your OH- I am that monster , its exhausting and detrimental to the household.

Good luck Sue, if I can be of any help please do message me.

On a positive note I am looking forward to my free week, having completed 3 cycles. Not quite half way yet, (6-8 cycles)

Sharron

[froghallParticipant]

Hi,

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 & treatment.  This post details the bad and now fingers crossed, the better.

FRAGMIN – my OH injected me daily for 2 months whilst on my original dose for 2 cycles. My consultant felt it was no longer necessary to continue given the fact I have had my dosage reduced. NOT having the daily injection makes life more bearable- my stomach looks less like a punch bag given I now only have my 1xweekly Velcade injection……..Theres hope even with the smallest of changes.

Good luck & wishing you perseverance. Sharron

[froghallParticipant]

Hi All,

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 reduced, which clearly is more suited to me. Velcade & Cyclophosomide 1x weekly x4 weeks along with Dex, which is now 10mg x  2 days x 4weeks- was 20mg x 4 days x3 weeks.

Whilst I still have daily fatigue bouts which creep up on me from nowhere, I can now function. I have a reasonably clear head and am able to follow a conversation. I only suffer from lack of sleep due to the dex on the days  I take it. OK , I clearly have the “dex” lows, which are neither pleasant or acceptable given the hurtful things I say,which I then cry about…….The Velcade PN is minimal. Whilst I haven’t been walking the dog & still not driving, I do feel brighter and much more able to cope. NOW I am better equipped & prepared to continue with this journey rather than chuck the towel in as was the case, believe me. Maybe it was necessary for me to experience how bad “treatment” can actually be, to fully appreciate  how “manageable” it can actually be when on the right plan, with full cooperation and understanding from your medical team.

Onwards and upwards – Cycle 3 completed next week, a weeks break then onto cycle 4- half way point !!!!

Hope this helps……Sharron

 

 

[froghallParticipant]

Hi,

 

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 you.

Rebecca- I rather think I have given you the impression I am fitter than I really am. I can actually do a 20-25 min walk with our dog, on an incline at a modest pace. I built up to this since having him last December. I did actually comment to my consultant before LCDD was diagnosed that everyone else in the family had greatly improved fitness but I was lagging behind…….Now I know why. My old fitness days were indeed high octave- high impact aerobics Jane Fonda Style, 30 daily laps of a large pool, Netball, Athletics, Latin American Dancing winner, competition level gymnastics- which no doubt has a lot to answer for arthritic joints these days.

However I have clearly taken on board what you say about “Fatigue” and to get moving as indeed my cancer handbook reiterates. I actually took our little dog for a walk on Friday for the first time in 7 weeks, (when chemo started). I was very slow which gave him more sniffing time. I even looked up at the blue sky and marvelled at the flowers heads which have faded from high summer. I was a little weak on the return journey. BUT I managed a 10 min loop of our neighbourhood. Then repeated it again yesterday!!! Would like to say I feel better for it, but feeling a little off colour today, which I am sure is not related. Went to bed at 7.30pm last night, 1 night toilet visit, awoke at 6am this morning, with a sore throat. No temp, but still yawning and feel fatigued. Talk about going from the sublime to ridiculous….over 10 hours sleep in one go!!

HAIR- 6 wigs? But its a case of what works for you and clearly you are now feeling much better about your appearance. I was/am concerned too. I had my hair cut from below my shoulders to a chin length bob 3 weeks into chemo. There was some uncertainty with the medical people whether I would lose it or not. BUT that it would definitely go with SCT. So as it is, I have a more manageable style, with a less “Ruggish” appearance, given I have very thick wavy and now brittle hair thanks to the meds. Goodness knows what texture it will be after SCT. But my recent purchase of a “big hair air-styler” which has a huge rotating blow dry brush so my hair is frizz free & smooth without the need to use straighteners which I have used for 20 years.  Plus its effortless and great for my Carpal Tunnel wrists or for anyone with grip difficulties. I will have it cut even shorter before SCT is planned.

You do talk some sense. I gain so much from your various posts, you are very eloquent & insightful with peoples feeling & difficulties on here. I like your writing style & the fact you say it as it is. You remind me of a Myeloma blog I follow – E.J. Bones.

So a big thank you for taking the time to advise & uplift me.  Plus sharing  your own experience. Will forge ahead with my daily walk and maybe next year I can resurrect my gymnastic prowess and apply to go on BBC’s Tumble.

Sharron x

 

 

[froghallParticipant]

Many thanks Rebecca…….

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 readings.

The family are slowing  learning & recognising when to give me a wide berth when the lows hit. Unlike you couldn’t even begin to think about exercise. It is a real shame because prior to the start of the treatment “12 Aug”, I had built up my stamina & strength by walking the dog each and every day, albeit not as long a walk as I would have liked. I really miss taking him…… was probably the fittest I had been in a long time 7 weeks ago. As for now can’t even manage a 100 metre walk down to the shop……

As you say, hopefully I will eventually learn to tolerate my new dosage. The Velcade & Cyclophosomide trouble me less. A little bit of PN but I have carpal tunnel in both hands anyway, so its hard to distinguish between the two. Haven’t lost my hair, but been assured that will happen when I have SCT-again am grateful for small mercies.

Housework- lol. I have bottomed the house, de cluttered every cupboard……However last night was the best night’s sleep yet since I stopped the roids 11 days ago- slept a sound 6 hours straight through with no getting up for the loo either……6.00am  wide awake & surfing the net for a weekend break away in between cycles for a little “happy treat”.

Take care

Sharron

 

[froghallParticipant]

“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 people at a charity event, hopefully with big pockets and a big heart. All the very best & thankyou for your cyber hugs too.

Sharron

[froghallParticipant]

Hi,

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 de-cluttering is I don’t want my OH & Son being left with the burden of sorting through it all when the time eventually comes. Plus mentally, its helped me to focus whilst HIGH on steroids. Also I don’t have the energy to do a car boot given my chemo is waring me down. So the next best thing was for me to donate to a couple of local charities…..one of which is collecting the stuff as I have boxes of stuff. . I also spent a fair bit online yesterday buying xmas card/wrapping from the Myeloma & Leukaemia shop…..100% of monies raised goes to each charity…..

So car booting- hard work, very enjoyable/ rewarding, and an eye opener. You’ll get the minority wanting something for nothing, you may be then thinking BUT I paid £50 for this. LET IT GO- is my advice without quibble and save your effort. I remember thinking but if you want more then put it on Ebay….The dealers are priceless and will try all their trusted hoodwinking & distraction tactics, (happened to me) by racing to your stall as and when you are putting out the goodies. Don’t let them near you actual boot-close it- get someone to do the boot with you, so they can keep an eye on who’s handling what. Keep your wits about you with money exchange and make sure you see and calculate what they are having NOT let them tell you, having squirrelled away the goodies in their own boxes/bags which miraculously appear out of nowhere!!……Take plenty of plastic bags, lots of change, a flask/snacks, plus some warm clothing which you can layer – you will be surprised how hungry you get with a 5.00am start and the inevitable fast food vans charge you a fortune. Every penny made would be better spent lining the charities pockets not the burger stalls.  Take you time setting up, as its nice to save some of your better stuff for the normal punters not the dealers after the flurry of trading in the first hour of manic selling.  The pace will slow & then you can restock &  take a much needed breath. Plus you still want a reasonably attractive table. I take a nice cloth to display everything on and try not to store stuff under the table, far to difficult for those us with creaky bones to get to. Don’t spread out too much beyond the table, so you can have control, and regularly re-arrange your display. Above all enjoy- you will learn a lot about human nature too……..Gosh how I miss doing a car boot!……

Cannock is not a million miles away from me, we used to Stafford car boot, both buying and selling for many years. I purchased most of my antique, 1950’s glass collection from there, and all my wonderful pottery.  BUT a car boot is no longer doable just now. You could also display a hand made sign for MYELOMA CHARITY- BUT TO BE HONEST DON’T EXPECT TO GET ANY MORE FOR YOUR STUFF. People really do knock you down. I remember once a lady engaging me in a in depth conversation about a  Boss Polo Shirt- she kept coming back, agonising over the colour/sizing etc. Eventually she wore me down and took the blessed thing away for the grand sum  a £1. I did tell her it wasn’t John Lewis she was shopping at-  it went over her head. lol.

So I hope this has helped, possible scared you……BUT enjoy adding up the funds at the end & the satisfaction of knowing you have taken time out to put the hard work in, raise funds & much needed awareness………good on you!!

Sharron x

PS. Electricals usually get snapped up by the European community, Bag, Shoes & Clothes by discerning ladies- tagged items go first. Books always a good standby. Crocks/glass attract the dealers. Anything goes really. GOOD LUCK & LET US KNOW THE OUTCOME.

 

• This reply was modified 10 years, 1 month ago by  froghall.

[froghallParticipant]

Signed & F.Booked- hope each & every sig DOES make a difference………

Sharron

[froghallParticipant]

Hi,

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 grocery shopping!!)…..

I realise its early days, and am preoccupied for hair loss signs…..I spent the entire past weekend after week 1 mostly sleeping. Plenty of bruising on stomach area but I expected that given my easy bruiser status. Oh and I mentioned possible Peripheral Neuropathy today, given the fact my palm was numb and had experienced pins and needles for the past couple of nights, this evening not a dicky bird, even typing is easier.

However, I am finding the mental confusion hard going. When asked for my personal details today I hesitated…had to think about my address. So I guess as everyone says we are all unique, will react differently to the regimes. BUT it sure does help to learn from others and help to clarify and educate me better in what each and every one of us is going through.

I hope things get easier for you both, and that with a few adjustments over the course of the cycles your husband has an easier ride.

take care.

 

[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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