[froghallParticipant]

Hi,

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 path with the current dose……My consultant totally agrees and after 6 weeks of:-  Velcade x Tues & Fri wks 1 & 2. Cyclophosamide Tues x wks 1, 2 & 3. Dex 80mg over 4 days on wks 1 & 2. With a shed load of antibiotics etc. 125 tabs per week + 9 injections, (inc. daily Fragmin)

I am becoming a sleep deprived monster.  Very unsteady to the point I now hold onto furniture to navigate my way from the lounge to the bathroom on the same floor. I am absolutely manic. Insomnia averages from 1 am through to 5am each & every single night.(I take the dex 7 am). I AM ABSOLUTELY EXHAUSTED. My speech is slurred.  I rabble on ten to the dozen about absolutely nothing and at 90 miles an hour BUT  I cannot conclude a conversation?? due to the shakes I find it difficult using my hands in any way and typing takes an age. My legs are so weak. I am overly emotional, OCD has kicked in, patience deserted me, and am finding the whole sorry affair debilitating. I haven’t dared drive these past 6 weeks. I don’t go through the door alone and then after each hospital visit if I’m up to it I will call in the shop after my OH dropes me at the door, & hold onto the trolley for a swift sweep of the aisles. …….Hopefully you get the gist…….So at my Appt Friday last with my  consultant, who listened empathetically to my woe, frustrations and emotional ramblings-   it was decided I need a break. (REJOICE)

I asked him if my reaction to the meds was all very normal OR  was I being a wimp? I am after all only 50 years old not 90. Despite my OH feeling I have aged 40 years in 6 weeks.

SO my meds will be re-calculated and adjusted with a less intensive schedule. I have been ordered to rest and sleep for the next 2 weeks and I will  most certainly oblige. Since my last dose of Cyclophosomide  Tues 16.09 and my last Dex Fri 12.09, I am finally turning a corner. I am now down from over 5 hours per night of sleeplessness to approx. 3. Last night I managed only 2 hours of insomnia. I feel brighter, the shakes have subsided. I am actually typing this without too great an effort. I am still wobbling and holding on, albeit a little less. Legs have a little more strength but dare not venture out alone, drive or walk anywhere. I also managed a rather pleasant 20min conversation with my next door neighbour who has not seen me for the past 6 weeks. Ok I had to sit on the garden bench, but I remained fairly lucid throughout if not a little teary. Thank goodness for small mercies…….

Quality of Life vs Treatment. Clearly in the long term the show must go on. BUT what a show it is, no grand finale for sure.  Would be lovely to hear from any others who just couldn’t tolerate either the steroids or the whole combination. AND if this resonates with anyone out there???

Thanks fro reading,

Sharron  x

 

 

• This topic was modified 9 years, 7 months ago by  froghall.

[rebeccaRParticipant]

Hi Sharon, I was 50 when diagnosed and have stge 4 kidney damage. I was on velcade/dex for 8 months pre SCT. Dex was all the things you say but I had only had dex once a week so had time to recover from it for a bit each week – I hardly slept at first but used to work nights so can function on very little sleep and my consultant said my kidney damage made my body more difficult to cope with it. After the first 3 cycles or so I got used to the pattern and my body adjusted accordingly I think and symptoms seemed less – tho still horrible. I drove throughout but often wondered if I should and used to meet people and have 3 conversations at once at very high speed without listening to any of the answers!- which we all found amusing at first.Eventually I learnt to manage it by not going to work on dex days/nights and avoiding new people on these days/have more alone time- burnt off the energy with exercise/chores – learnt to realise my “down” ever so weepy days and do more “happy treats” – the downers were the only things that got worse over time. As cycles wore on I became very fatigued anyway but continued to exercise so even on dex days on the last 3 months I slept soundly the moment I closed my eyes. I think your first 2 cycles would have been your worse anyway until your body/mind adjusts so hopefully with the reduced doseage as well it won’t be half as bad when you resume. It is important I think, for normality/family sake to recognise the cycle of “abuse” and have in place coping mechanisms for each mood swing – how best to utilise each of this time with minimum adverse effects. Housework in the middle of night felt quite satisfying in the end.

Rebecca

[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

 

[rebeccaRParticipant]

Hi Sharon, glad you’re looking for a weekend break – as time went on I “treated” myself each day – nothing major maybe making the effort to meet for a coffee etc. This is a hard time (understatement) so always be kind to yourself. I think it’s also worth recognising as being newly diagnosed you have all the emotional toll of that – which would give anyone sleepless nights – as well as the treatment that’s why I think as it sinks in it’s gets easier – short term anyway. If you were fit before I would try and resurrect this as exercise was the only thing that kept me sane – long fast walks, loud escapist music blasting and if you read any of the cancer leaflets they say to try and exercise when you feel fatigued because it actually gives you a lift of energy. There are many on the US Myeloma Beacon site who exercise throughout no matter how tired they feel and all say they come back feeling re-energised. I craved normality so exercise, as with you was part of my normal, it always gave me lift and in the end, you will get more tired as cycles increase, because I refused to give it up I slept so soundly on dex because I was just so exhausted. Mentally it helps tremendously and I think it helps your family see you doing what you always did – if you’re still doing what you always did there seems less worry for them. You cannot fight disease biology – you just take the treatment and see if it works – the real battle in this is fighting for your normality -your way of life – don’t give anything up without a fight. Aim to go into SCT being as fit as you can be and this will aid your recovery tremendously. I had mine last Xmas and am back to normal fitness physically but its a slog so the more you do now I think you will reap the benefits later (and now). with regards to hair loss I have just ditched my wig 2 weeks ago – I had 6 wigs from last October to now – all the same style – highly natural and expensive – I chose to match my own hair/style and it was so good nobody knew but I had to keep replacing them as they were shoulder length and whilst my wigs stayed in fantastic shape I had to keep replacing them as the backs went quite quickly (ruggish) where they rubbed on coats/clothes. If I could do it again I would have cut my hair short whilst on treatment so I could then have a similar short wig and would have saved myself an awful lot of money – I used the Natural wig co and always wore what they recommended underneath for day to day wear and for exercise. Wigs were great – always looked great and you never had the bother of having to do your hair just pop it on and good to go. I always kept 1 for best so that it was in pristine condition. Make sure you prepare well in advance of losing it as it makes you feel less anxious about it when the time comes.
Rebecca

[finnParticipant]

Hi Sharron

There was no chance of me sleeping while on Dex so I just took sleeping pills on Dex nights. They made such a difference to my sleep and therefore to my attitude towards everyday life/drugs/illness that I would strongly recommend them to anyone. As I took them only a few of nights per month, there was no problem of getting addicted to them. Now while I am chemo and dex free I have not taken them for nearly a year. Best

 

[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]

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

 

 

[sue48Participant]

Hi All

I am starting Velcade , Cyclophosphamide and dex  (VCD)on  Wednesday, does anyone on  VCD also inject with Fragmin, my Doctor says I don’t need that, but looking around most people seem to be on fragmin, also are the side effects on VCD as bad as what you read, I will be on weekly velcade , am  dreading it, any help would be very much appreciated.

Thanking you

Sue48

[meganjaneParticipant]

Hi Sharron,

I am so glad to read that the lower dose is more manageable and that you are feeling more positive. I hope the side effects continue to diminish as you start cycle four.

Megan

[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

[sue48Participant]

Hi Shaon

Do you mind me asking what dose of cycloph. and dex were you on, and what dose are you on now, jus interested, have  just started on cycle 1 day 3 I am on  cyclophosphamide 30mg and dex 2mg, no effects so far but early days.

Before I relapsed the first treatment was thalidomide 100mg  cyclop.500mg and dex 400mg made me feel ghastly

Your help would be appreciated.

Take care and hope you are feeling better soon.

Sue

[sue48Participant]

Hi Sharon

Sorry forgot to mention Velcade  injection once per week.

Sue

[GillParticipant]

My husband was on a really high dose of dex. It turned him from a laid back pussy cat who rarely got angry to a a bad tempered, argumentive monster. We called this dexatude. I hope you are on a low dose and it is not affecting you too badly

Gill

[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

[alpenatorParticipant]

There have been lots of responses to your original post; but I will add my bit if I may.
On my first chemo regime, after diagnosis, I was on CTDa but had to come off it after 41/2 months as I was so ill that I waas spending most days in bed and feeling like death.
My consultant said that there was no poine continuing if the treatmen was worse than the disease and my pp had dropped to 6 (I think.)
The MM relapsed after 8 months with pp at 39 and I was put on Velcade and Dex, 4 weeks on and 1 week off; the Dex was 10 tabs @ 2mg on days 1 and 2 of each cycle.
On the first cycle I had dexhead most days and my PN got much worse.
I have just finished the 2nd cycle and in the past week I have put on 1 stone (never put weight on before,) my sleep pattern is shot to pieces (although last night I managed a 6 hour sleep without interruption,) my PN has worsened and has crept up my left leg so that it feels dead below the knee. I have also felt very depressed but declined my GPs offer of tranquilisers.
I guess that we have to continue the fight, although at almost 79 I wonder how long I will continue to say that.

[Author]

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