[OutdoorsPaulParticipant]

Hello all
Found out a little more about my Myeloma today its called Lightchains…does anyone have any pointers to a good resource for me to check out(does it have another name?) .Currently on Myeloma 11 trial RCD pathway and half way through my first cycle.Side effects OK can not complain.Listening to my body and being active striking a balance at the moment but being positive stuff!:-)

[DaiCroParticipant]

Hi Paul,

Basically there are 2 types of Myeloma… Heavy Chain (normally associated with Paraproteins as a measurement of the disease) and Light Chain Myeloma (also known as 'Bence Jones' Myeloma and generally associated with Kappa Light Chains for measurement of the disease). Heavy Chain is the more common of the two but apart from measurement purposes and kidney problems being more prevalent in the Light Chain disease, everything else is shared.. including the treatments, side-effects and general outcomes.

Like you I have 'Bence Jones', Kappa Light Chain Myeloma… I have extensive bone damage but fortunately no kidney problems. I am not familiar with your RCD pathway trial, having followed the then traditional CDT (Cyclophosphamide, Dextramethasone, Thalidomide) frontline treatment. These trials, mixing up frontline and novel agents, is a relatively new movement and I am as interested as anyone else to see what initial effect they have.

Have they formulated a plan for you yet? i.e. RCD – Stem Cell Harvest/Stem Cell Transplant? How many Cycles of RCD? (Assuming Revelimid, Cyclophosphamide, Dextramethasone). 4/6 Cycles used to be the norm.

Good luck with the trial… if we can help with anything, specific or general, we will certainly try. 🙂

Dai.

[OutdoorsPaulParticipant]

Hello Dai
Many thanks for the reply,since the posting I found out it was Bence jones and looked on the sites info leaflets which helped alot.
3-4 of my ribs have been weakened as have 1 vertebrae and the consultant put me down as in the "early stage" .So having Bisphosphate infusions once a month when visiting consultant.
I was diagnosed on 16th August this year after returning from our holiday in Scotland,"whisked" into Huddersfield Royal Infirmary for 9 days with a visit to St James in Leeds for radiotherapy on a tumor they spotted near my spinal cord which caused concern.That has been "zapped" and pain has definitely nearly gone so fingers crossed something there has worked..we will see.
My consultant straight away spoke to me about the Myeloma 11 trial and explained about the process.E.I the pathways.Now Dai being new to this new world i apologies for my layman's terms and maybe some vagueness!.
I am on the RCD pathway (Revlamid,Cyclophosphamide,Dextramethasone).I have just completed my first cycle today and will see the consultant and start on cycle 2 later today.
Side effects on my first cycle seem to have been, feeling abit "leggy" in other words abit heavy like you have over exercised the day before.But this has worn off more and my exercise has increased.Dex makes me initially energetic then when I come off them it seemed to make me tired on 1 day after stopping,this then went.
I take Revlamid at night between 9-10pm which has a sedation effect.If taking Dex I take at either 6-7am so it lowers the issues around sleeping at night.Which so far has worked,thoe when i was in hospital found sleeping so so hard but this could of been the noise,different bed etc and lots of thoughts!No issues with feeling sick and as usual will eat like a horse!Thoe just thinking about it after taking Cyclophosphamide I got a sore throat for 3 days..I will mention that today.The plan seems to be as you say about cycle 6 I maybe ready for harvest and first SCT. There seems to be lots of "coin flipping" by the computer to decide on which pathway you follow.But either way you receive the current NHS treatment for the condition.I think i am right in saying this but they say the Revlamid is good in later treatment so now looking to introduce Revlamid early in treatment as well to see how it goes.As I say I am still new to this so hope the above helps..please ask as many questions as you want i am always happy to help out.I am a pretty positive person in general but talking to work colleges and friends is i think the hardest thing at the initial stage when people find out.But everyone is being really supportive to me and my wife Rachel.Just come back from visiting family in Paris which was lovely,we used MIA insurance which I would highly recommend! take care Dai and speak soon.
cheers Paul:-)

[eveParticipant]

Hi Paul
My husband is on the MX1 trials,he got CDT side,6 cycles intensive pathway,some advice I can give you,is high dose DEX does disguise any infections,low blood pressure was the start of Slims,not even picked up in A&E,so do take care.Septic pneumonia has cost him the chance of going for SCT.
Now on Velcade as no bench markers to judge how mm going as increased in bones,so will have bone marrow taken as marker.
Hope every thing goes well for you,being on the trials does mean,although you have to give more blood,urine and bone marrow,it does help,as in Slims case,were his MM only shows in bone marrow.
Good luck Eve

[Gill20Participant]

Hi Paul,

I hope your treatment is going well and you are started on your 2nd cycle now. Don't worry about not knowing much about this we are all on a learning curve, well I know I am.

I am not sure what type of myeloma I have no one has ever said, although I think it may be Heavy chains as they always talk about the paraprotein levels but i must ask at my next apt. I had mgus then smouldering mm for many years with my pp levels of 9 which I think is a percentage because they said they start treatment at 10%. Unfortunately things changed in between my yearly checkup but it was picked up by my GP and I started treatment in July, I am now on my 4th cycle of treatment on the Myeloma 11 trial I got CDT, my doctor wants to push me to the full 6 cycles which I have worked out finishes on November 11. Going for the SCT but not sure what happens after this treatment. Side effects seem to change all the time, the worst thing for me is the swelling from the steroids and the sore mouth. One day I will have a rash then it will disappear and I will get very swollen legs, they will go down and I will get something else it is so weird but I can put up with all the side effects as long as the end justifys all the problems. The only constant thing is the heavy legs, going upstairs is getting to be a slog, I used to run upstairs now it takes forever.

Good luck with your treatment I notice you said exercise makes you feel better, I must try that. I am still working full time and my office is on the first floor and I am up and downstairs all the time so I guess this is some sort of exercise lol.

Gill

[brochoParticipant]

Hi Paul not all doctors classify patients myeloma type to them so you will get various answers to your question When I was first diagnosed they were able to measure my paraprotein levels and therefore the level of myeloma in standard blood tests When this proved inaccurate after a couple of years, I relapsed with a large tumour and still had low paraproteins, they began to use the Serum Free Light Chain Test. This seemed to work well until my next relapse failed to show up either So now I am classified as a non-secretor , my myeloma activity can only be determined through mri scans and of course any changes in myself such as pain This is what alerted me to my latest relapse , confirmed by the mri scan My advice is to always be aware of yoyr body and dont ignore any pain that hangs around for a while Your doctors will be only too happy to check it out for your peace of mind Hope this helped a little love Bridget x

[OutdoorsPaulParticipant]

Hi Eve
Went to see the consultant yesterday (only 2nd apt)She seems happy with me at this stage.My October apt will tell me how I am reacting to the medication.Thanks for the "heads up" on the Dex which can mask infections/low blood pressure,i did ask my consultant that question and she did indeed say yes it does…So "thank you" for the advice and I have made a mental note of that as has my wife.
take care and speak soon
Paul

[OutdoorsPaulParticipant]

Hi Gill
Exercise does seem to help me, though it can be mentally challenging to get going.I.E I try to walk about 2 miles a day (currently off work) on the canal,it might take 5 mins for my legs to get going as such,But once moving things feel better.I have quite good muscle depth in my legs so i know my legs can do it..but i know when to stop as well.
Just come back from Paris after visiting family and we walked quite abit maybe 3 or 4 miles a day.(but fortunately this was on my "week off meds")so that helped!
I do agree that there are days when feeling "leggy" does slow me down and i think "what am i doing sitting down again?" I asked my consultant about that and she says the steroids (Dex) can be responsible for that.When I come off Dex it slowly wears off just leaving me with a lack off instant energy I.E have no sudden umpph! so have to cross the road with care.Going up and down stairs is definitively exercise! so keep it if you can as it will help to keep fitness up ready for the next step (no pun intended!:-D) .I hope to start swimming this week(1 or 2 sessions a week) as its a weight bearing exercise..nothing to strenuous thoe. Gill at what stage did you return to work? I have been off work since August 16th.
Take care
Paul

[OutdoorsPaulParticipant]

Hi Bridget
Just looked at my discharge sheet and lightchain Bence jones protein is what they are monitoring.I continue to provide both blood and urine samples for my consultant.(The 5 ltr urine container always seems intimidating!)Seen the consultant yesterday and now on cycle 2 from today(4 days of Dex to start with),I find out in October if current meds are working or not.
I have contacted my nurse a few times with some questions a felt better for doing so..i did some painting ..well i painted all the down stairs windows and doors(outside) in 1 day then next 3 days aching..lesson learned! Just come back from Paris which was great,used a ruck sack(40kg weight) to take clothes and stuff for me & wife ended up aching after that…lesson learned time to buy a suit case.:-) paracetamol took the aches away.I agree any prolonged aches /pains to check out with the nurse.
How are you doing with meds plan,i did notice on the posts that you had some decisions to make .
take care and speak soon
Paulx

[HelenParticipant]

Hi Paul
Belated welcome, I've been a bit out of commission lately.
I was diagnosed with IgA lambda light chain myeloma in feb, was on RCD arm of myeloma xi trial and just had sct 5 weeks ago, doing ok now.
My light chains dropped from 800 to 11 (normal) in the 4 cycles I had. So -good response and on to sct.
One thing I'd warn about and that is the cumulative effect of the chemo and like you I went away in the first 'week off' and was fine walking etc. However, as the months went on I found the week off was one where I just slept and kept going with work but was gradually getting slower and slower, when I stopped chemo and before the stem cell collection it took several weeks for me to get back to pre chemo fitness. As said by many, listen to your body and try not to overdo it. I also found I felt much worse when I was cold or hungry and as I was so tired I often ignored these, to my later cost, then you get snappy and horrid with the poor old nearest and dearest! ( well I did try not to but……)
Helen

[OutdoorsPaulParticipant]

Hi Helen
Thanks for the post I agree that my body will tell me and it does..I have taken the advice about resting and agree that works.I got a little snappy on one occasion about where the Pears soap had gone from the bath room! We laugh about it now and I can tell when a Dex moment is upon me.My personality is quite laid back if not horizontal but a positive one so can tell if getting a little spikey and smile to my wife Rachel and say "think its the Dex"
Glad you had a good response to treatment on RCD.I am a little nervous of the stem cell transplant seems a big thing.Seems like I will go into St James Hospital Leeds (Jimmy's) and be in their for a month, did that happen to you? and whats is the recovery time at home roughly? its a new world out their.
hope to catch up with you soon
cheers Paul:-)

[HelenParticipant]

Hi Paul
Ah the missing soap.. There you go it's the little things that get you! I worked at jimmy's back in the 80's I have fond memories of the place, I live close to the Newcastle centre so was only going to be in hosp for a few days and come and go as a day case how ever became very ill at day 6 and was admitted for the next 10 days then been home since with regular returns for blood tests. Now am getting much better, about 1 tired day in 4. They say 3-6 months recovery to full function. Again it is an individual thing and everyone has different reactions to the sct, and you don't know how you are going to react until you have the melphalan, but it is the current best treatment especially for the young and fit and we just have to go for it. It was horrible to feel so ill when I've never been ill before but I'm hoping I get a long remission now, again there are no guarantees but I'm a glass half full person, so remain optimistic.
Helen

[OutdoorsPaulParticipant]

Hi Helen
I to am a glass half full rather half empty person so positive stuff and we shall keep going.Thanks again for the info Helen much appreciated.Wow 3-6 months recovery time but like you say its an individualistic thing.Glad to hear that its gone well.
speak soon paul

[Gill20Participant]

Hi Paul,

I have worked all the way through I haven't taken any time off but I have a business to run and staff who have holidays and sickness and school holidays lol. I was also quite lucky as I was being monitored and although I had to start treatment straight away I had minimal bone damage. I am having a week away in October, I can't decide on Cornwall or Edinburgh at the moment, I am thinking Cornwall may be the better options as there is too much walking in city holidays.

I was told it was the dex making my muscles weak, they do seem to be a bit better at the moment and I can make the stairs a bit quicker. I don't get time for exercise in the week with working full time and cooking the evening meal and weekends are always the worst times for me I am not fit for anything on Sundays or Mondays so no chance for walking which I love.

I can put up with all the side effects as long as the treatment works. I have been told that I will be in hospital 3-4 weeks for the SCT but I don't know any more than that. I will be in The Christie in Manchester.

I haven't been too bad with the dexattitude till this week when I am concious that I have been a bit snappy and trying hard to control it.

Good luck with the treatment and return to work.

Gill

[CarolBradley1Participant]

Hi Paul and welcome
I am on the Myeloma 11 trial with Revlimid. Hope this helps – I had my stem cell transplant in February and although I haven´t found recovery a swift process (I´m a horse rider and sailing kind of person so I´m sure you understand my lack of pacience!) my paraprotien level is now 00. Basically this means I am officially in remission and getting stronger and brighter every day.
I am also being treated at both Huddersfield, Halifax and St James (for transplant) Dr Feyler is my specialist and she is fantastic!!
I haven´t read all your posts so I suppose I have missed lots but anyway, take care and best of luck with the treatments.

By the way, I should tell you that I am back riding my two horses one of which is an ex race horse 17.2 hands, young, at times giddy but very handsome and am currently in the midst of planning a trip to Spain with both horses. So when you get the odd dark day during transplant grit your teeth and repeat "just keep breathing because this will pass". I put photos of husband, son with grandson and Harry the horse up and stared at them until I felt better!
Best Wishes
Carol
p.s Re dexamethazone I did get to the point where I thought it might be worth my while getting a night job as I could never sleep but it did the job.

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