[wendyduffieldParticipant]

I may be relapsing unfortunately. My Kappa light chains were 14 in July, 19 in October and 39 in December (up to 19 is normal range). Whilst it may just be a blip as I know they fluctuate I feel I need to prepare myself for what my specialist nurse called "relapsing". I guess that if my next test on February 15th shows another rise then I will be relapsing. She explained that I could be relapsing over many months before they start treatment.:-(

My question is to those who have relapsed, how long were you relapsing before treatment started and did treatment start before there was any damage/issues caused by myeloma and for those of you lucky enough to have light chain myeloma at what level did they get to before you started treatment?

The good news is that 16 months post transplant I feel very well and have started training for a triathlon. Hopefully I'll be able to continue with that!:-P

[tomParticipant]

Hi Wendy
Hey I hope its just a Blip young Lady 😀 and your KL drop to normal, its a worry everytime we go to have bloods checked I worry about it everytime the date comes round :-S

Lets Hope all is soon back ro normal when you go Feb 😎

Love Tom "Onwards and Upwards xxxx

[eveParticipant]

Hi Wendy

Nearly missed your post!!! It would be easy to say not to worry,but after enjoying so much freedom from MM,it must be very depressing to think you have to start treatment,lets just hope it's a bit of a blip,if you start preparing yourself for it,it will be like livening on a roller coaster,Slim takes the attitude if you cannot change it,there is no point of worrying about it.

He leaves that to. Me !!!

Sorry about my spelling my excuse is not very good with I Pad plus taking very strong pain relieve for frozen shoulder,think I would have been better with Toms vodka, wishing you well,will be looking for your next post that says it,s just a blip. Love Eve

[VickiParticipant]

Wendy

I so hope it's a blip. You have done so well, so far! Sorry I can't help with the advice re relapse but just letting you know we are thinking of you…..keep going with that triathlon!

Vicki and Colin x

[BADGERParticipant]

Hi Wendy

I do hope its only a blip I have been having velcade last two months as my free light chains were rising if my kidneys had been normal they would have waited a bit longer as pp were only 8 but need to protect whats left of my kidneys so if no other damage they may just moniter you for a bit
good luck for Feb
Love Jo x

[eveParticipant]

Hi Jo

How are things going??? The Velcade is not so bad,just all the hospital visits !!!

Hope you are managing to get out and about,and results going in the right direction Love Eve

[BADGERParticipant]

Hi
Eve
Velcade not so bad if it didnt keep knocking my Hb out 2 units of blood every two weeks bit fed up today as waiting for blood but the clinic forgot to send my sample down until this morning has the cross match done at 2 oclock yesterday!! How is SLim I hope he is doing well and getting stronger and you are getting your lives back together I have not stopped getting out and about going to a folk concert tomorrow white blood cells holding up well so fingers crossed have avoided to many infections
Much Love jO X;-)

[HelenParticipant]

Dear Wendy
I'm keeping my fingers crossed for you that this is not a relapse, but a blip. I hope that your training for the triathlon can continue uninterrupted. Did you do all this exercise before the myeloma or is this a new hobby?
Love Helen

[DizzylizParticipant]

Hi Wendy,

I too hope this is just a blip Wendy and wow! Training for a triathlon you put me to shame, good for you!
Keep well and take care Wendy I'll keep my fingers crossed for you!

Love liz&kev xx

[wendyduffieldParticipant]

Hi Helen

I was quite active prior to diagnosis and did the 10k run in 2009 but I am more so now, but was inspired to try the triathlon by the Olympics and thought it would be good fun! My real passion is tennis though and I am now playing 2/3 times a week (and its outdoors!). To be honest I nearly chucked out all my sports gear after diagnosis when I was on treatment as I really didnt think that I would be able to do all this stuff again, so glad I can.

Hope you're getting better from the whooping cough, any holiday plans in the pipeline. Im off to tromso in Norway for a few days next month for some winter activities and to hopefully see the northern lights again and light chains permitting, India at the beginning of March!:-|

Wendy x

[DaiCroParticipant]

Hi Wendy,

Like the others I am hoping that this is a blip and your next readings are back to 19 or below.:-)

I am Bence Jones too and my treatment post relapse usually started at approximately 400 light chains. Velcade to Revlimid was 425 due to waiting to go on a trial that I just missed out on and Revlimid to Bendamustine started at 535… I believe that they would have stood out for 600+ but my platelets dropped from 150 to 70 in 3 months and they were concerned about catching hold of it before it spiralled out of control (my platelets have climbed back up to 80 then 90 in 2 weeks, so it looks like they are on their way up again which is excellent).8-)

If you are relapsing there will be no rush to start your next treatment… at the current rate I believe they could watch and wait for another couple of months yet… but once again I hope that your light chains drop again… if not this cycle then the next.:-D

All the best:-)

Dai.

[KeithH17Participant]

Hi Wendy
only just read your posting about relapse. I've relapsed 3 times as you no doubt already know. My treatment started
around 2 months from each relapse although the actual relapse date is difficult to determine. I developed pain in my ribcage and generally felt tired and unwell. I had a blood test and bone marrow biopsy which showed PP's had shot up from 5-30 and MM activity in the marrow was 35% proving the MM was back on the move. My latest relapse
Started with my Hb,Nuets,WBC and platelets being rock bottom (still are) and pp's up from 30-55 all inside 2 wks.
I do hope yours is only a blip,I found that you have a gut feeling about it,I know I did but only the Doc's can really tell you for sure and worrying does nothing to help.

I saw AndyG in the unit on Thursday when I was having transfusions and he wondered if you were still doing the Triathelon.

Take care Wendy and don't worry,it will turn out ok for you I'm sure.

[PerkymiteParticipant]

Hi Wendy, I am in the same boat as you although I am PPs and not Kappa. My SCT lasted 2 years which is 6 months longer than predicted at the time.

I have gone from 3.5 to 6.7 but it was over 3 months. I have now been given a 2 month appointment, 22 Feb 13, to see what is happening. The Consultant's letter to my GP indicated that I am relapsing and he expects the PP measurement to go higher but at present time no Chemo intervention is necessary. The rest of my blood measurements were excellent.

Fingers crossed time I think 😀

Kindest regards ? vasbyte

David

[wendyduffieldParticipant]

Hi Keith

Thanks for your comments, you have more experience than you would ideally like of relapsing! I feel very well as I said in my post although at the level they are at I suppose it is unlikely at the moment that myeloma is active or that I will need to start treatment. Whilst I continue to feel well, I will carry on with my plans to do a triathlon in June.

Hope you are OK

Wendy

[ozzyParticipant]

Hiya
I too are in the same position my pp have shot up to 48. I had sct in January 2011 and it only lasted 21 months. I have had another BM biopsy last wed and full skeleton xrays. I am seeing the Prof at the hospital tomorrow and last week my consultant mentioned starting Velcade and dex. I will find out my fate tomorrow. What a start to the new year.
All the best
Ozzy x

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