[CarolsymonsParticipant]

First blood test after 3 weeks of CTD. Iga from 17 to 14.5, but lambda light chains no change at 435 also kappa have dropped from 9.97 to 3.18. Additional worries are creatinine has moved above normal to 98 and warfarin level still at 1.8 so I am now up to day 32 of stomach injections…..AAARGH! Am I expecting too much too soon? I was really hoping to respond quickly to treatment and move to SCT…I so want to go back to my family in Australia, but now I am scared I am going to be one of the people who don't respond to the drugs. As well my pulse dropped to 45 on last dex withdrawal days so have to take a tapering dose this time after the 4 days of high dose. Anyone else had this problem? Very sad!

[eveParticipant]

Hi Carol

When you first start treatment,you just want it to work quickly,but in some people it takes 6 cycles, my husband had 6 cycles only to find it had not worked,so if you keep building yourself up,and you are one of the unfortunate ones you will get depressed,best to work on a day to day bases,the 3 cycle seems to be the hard hitting one,and the hardest for some people.:-S

It is important to drink water,if you do not like it,drink anything,Slim drinks a lot of milk,because his appetite ,is poor.,the injections are very important,they never use to give them along side chemo ,only when a problem had arisen, when Slim was on CTD,I use to take his BP as steroids can hide infection.Slim had septic pneumonia ,and it had well taken hold,but symptoms were few,I just new he was not well,being new to it,I accepted what doctor said,until he was rushed to hospital.

Carol in 6 months time you could be over all this,but everyone will tell you it's doable,plan things,enjoy what you can now,forget the hospital,until its time to go for bloods and treatment. Look after yourself,Love Eve

[CarolsymonsParticipant]

Thanks Eve. Yes I have been drinking 3 litres each day since starting treatments. There is no way I am staying on CTD for too long if it is not working. I wanted to join the PADIMAC trial at University hospital as I read that Velcade is a more effective drug for lambda myeloma but the consultant at Ealing didn't recommend it. Now I am sorry I wasn't more assertive and asked to be referred. Bloody hospital is my second home…I was there Monday for 3 appointments orthopaedics, haemotology and anti coagulant clinic. Today and tomorrow for more warfarin testing then Tuesday back to haemotology for another blood test 'cos of the creatinine level….just as well I am on sick leave!

Carol

[eveParticipant]

I know its hard,21/2 years for us ,they say after a period people become institutionalised day patients,if you look around the waiting area,people just seem to accept,they are going to be there all day8-) ,I have always found the whole procedure very draining. So even after 2 1/2 years we are still rattling the iron bars(let us out:'-( ) .

I do now try to arrange all appointments for 1 day,one week we had 9 appointments at 2 different hospitals altogether a journey of over all of 250 odd miles. Carol the women who does the appointments has taken on board,you would think they could program a computer to attach appointment s to a patients name so they fall on the same day.

The only way to get on a trial is to attend the hospital doing it,some times smaller hospitals work closely with trials,but PAD trials are there,getting on them is the main thing. NICE fund CDT or CDR or CDV.,Slims consultant said that is the choice before any other treatment,and Slim will not qualify for trials,as unable to monitor him.

Velcade worked well for Slim got him to SCT,but Myeloma was back with in 6 months,we got to see our daughter in NZ.your body will get use to the concoction of drugs,so you will be able to know your good days and bad days.love Eve

[BADGERParticipant]

Hi carol

3 week on CDT is a bit early to worry your body should ajust I had 5 cycles which put me in remission for 3/12 years I had renal failure when diagnosed and my creatinine is still 340 and will never get better but i manage I am now on Velcade which is working well so I hope for another good remission I am sure they will get you well enough to get you back to your family in Australia they have a good program of treatments there also
Good Luck Jo

[CarolsymonsParticipant]

Jo, yes I know I am worrying prematurely but I was so optimistic that something would happen. Did you choose not to have SCT or was it not available due to your renal failure? I am still in 2 minds about the transplant, but as I am nearly 64 years old I am also worried about waiting in case my health fails me later and I am too old for transplant. It is such a big decision.

Carol

[VickiParticipant]

Hi carol

We can understand your frustrations. I think a gradual impact following treatment is more common than a big drop…..as hard as it is be patient. I always have said to Colin follow the instructions, listen to what the medics say,ask questions and then as Tom would say, onwards and upwards 🙂

You can do it. There's no right length of time but keep going, you will get there 🙂

Vicki and Colin x

[tomParticipant]

Hi Carol

Yes Three weeks aint a long time for this Darn MM thing, and don't worry about thinking it is cos av been and done that wondered WHY its taking so long :-/

But in 2009 I had 5 sessions of CTD then SCT later that year and to prove its a Doable I sit here in remission and Drug Free, and to boot I am now on 6 months visits to see the consultant 😀 , its a slow haul Carol but one well worth it.

One day at a time young lady it will all fall into place soon.

Love Tom Onwards and Upwards xx

[CarolsymonsParticipant]

I am trying to be patient but I have read that iga lambda responds better to the Velcade rather than thalidomide so I am kicking myself now for not insisting to go on the PADIMAC trial at University hospital. The consultant at Ealing advised me against it saying most people respond to CTD and it s easier than the Velcade route but I honestly believe Velcade is more effective for lambda light chains. Unfortunately Velcade is unavailable as frontline treatment in the UK (now standard in the US) until after CTD fails. If nothing happens to my numbers after 6 weeks I will be insisting on a change to Velcade under exceptional access rules….wish me luck! Anyone else with iga lambda and failed CTD?
Carol

[mhnevillParticipant]

Hi Carol

So sorry that you are feeling down. My CDT took six cycles to bring me into full remission. I had heparin injections all through it. Not on waferin.

Good news for you is that post CDT you will have Velcade in reserve for if/when you relapse. That's hoe I look at it as I am 68 (65 when diagnosed) and I have decided not to go down the SCT route. Don't want to give up 6/9 months of quality life for what might prove to be only a short remission. I feel with so many new options coming on stream – three since I was diagnosed, I will take my chances. But, of course, it is a very personal choice. I had other health issues so feel I have enough to cope with without self imposed suffering!

Hope things go well for you. I am always amazed at how quickly time passes. I'm sure you will get home soon – maybe in time for Christmas.

Love.

Mavis x

[CarolsymonsParticipant]

Thanks Mavis. I have to have another blood test today as creatinine rose last cycle so here's hoping that was only a blip. As it is the light chains that damage the kidneys and mine were unchanged after first 3 weeks of drugs it is an added worry. The doctor put me on a tapering dose of steroids this week which has lessened the side effects of the withdrawal. I reckon of the 21 day cycle I have around 11 OK days and 10 not so good. So hard to take when you are not used to being ill. As for the SCT I really do not know what to do.

Carol

[DaiCroParticipant]

[quote][b]Anyone else with iga lambda and failed CTD?[[/b]/quote]

Whoa! Back up a little there Carol. Are you really expecting us to believe that your CDT treatment has failed after just 3 weeks? It seems to me that your readings are just about normal for such an early stage. I wouldn't begin to worry about early indications until after at least 3 full Cycles. 🙂

I do understand your frustrations and your desire to get home to your family in Australia, where I understand they have a pretty well established MM programme (conversely my Consultant is from Western Australia… and an excellent Consultant she is too). 😎

[quote] [b] I reckon of the 21 day cycle I have around 11 OK days and 10 not so good. [/b] [/quote]

At this early stage a 50/50 ratio of good/bad days is pretty good, especially where chemotherapy (Cyclophosphamide) is involved. Once your CDT course is over and you have that hiatus between frontline treatment and pre-SCT procedures, you will feel the benefit of the rough early days by feeling pretty good. 🙂

Of course your aim should be to gain your SCT and get recovered sufficiently enough to be able to take up your bed and move back to Australia.

[quote] [b]The consultant at Ealing advised me against (switching to PADIMAC) saying most people respond to CTD and it s easier than the Velcade route[/b] [/quote]

And IMHO he is right. I wish you well but I would urge you to be guided by your present consultant re: CTD and PADIMAC. For one, it would mean starting again… and there is no way you will be able to withdraw or dictate to a trial. A full 6 to 8 Cycles on PADIMAC + at least 2 Cycles of CDT would delay your SCT and use up your Velcade option… which could well be a vital ingredient in future treatments. 😐

If you were reporting in after 3 Cycles of CDT I could understand your concerns (given that you had any to report that is). But until then I would advise gritting your teeth, enjoy the comparative ease of your 50/50 ratio and give CDT its chance to work. 😎

All the best.

Dai.

[adminKeymaster]

Hi Carol

I can understand your disappointment, but as everyone says, 3 weeks isn't long. I think they usually assess at the end of 3 cycles as to whether a change in drug regime is warranted. Like you I have Iga lambda light chain myeloma. I had 6 cycles of CTD ie thalidomide and achieved a complete response after 2 cycles. I have now been in complete response for 2 years and 3 months with no further treatment since CTD ended, save monthly zometa.

Best wishes
Tracey

[CarolsymonsParticipant]

Thanks Dai I know I am impatient; it is just that in life I always aimed for the A* (or high distinctions in Australia) when I handed in assignments and I kind of feel like a failure at this myeloma game already. I know I am being ridiculous, but I am still almost in denial some days I fear.

Carol

[Author]

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