Maureen
How long did I take for the CTD to bring down the lambda light chains? 3 weeks into treatment but mine are stubbornly staying at 435, no change-bit anxious!
Carol
Sending positive vibes your way
Carol
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
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
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
You are right- it is so helpful and reassuring for beginners like me to read posts like yours..hope all continues to go well for you today.
Carol
Lesley -some good news, some frustration….all bloods, red, white etc still normal, iga and light chains not in till later in the week. Collar bone seems to have a thin layer of bone where the tumour was…probably thanks to the radiotherapy. My frustration lies with WARFARIN! I know I am being ridiculous, but of all the traumas that come with this toxic overload in my body, it is the daily stomach injection of anti-coagulant that is doing my head in. For 3 weeks I have been on warfarin plus the injection and my level is still 1.2! Has to be 2 at least. I was so hoping that today I would be saved from that darnn injection but no….back for another warfarin test on Thursday. I know I am just being a baby about it. Tomorrow is my 34 tablet day so tomorrow and the next will be miserable. I am really wishing for the iga and lambda numbers to have moved downwards, but am probably being premature in expecting that after only 3 weeks of drugs. Gotta hope though.
Lesley lots of positive thoughts from me to you for Thursday. How long were you on CTD?
Carol
I am also in week 3 of CTD and feel shaky all the time and my legs feel like they don't belong to me. Also have suffered really painful stomach cramps since coming off the dex last Tuesday. Will check out with the doctor tomorrow when I go for bloods and bisphosphonates, but even walking is painful at he moment which is really depressing me. Surely this is not a normal side effect or is it?
Carol
Will be thinking of you…glad they collected enough cells the second time around….what a pain to have to go through those injections twice.
Carol
Mothas I go on Monday for first bloods so am going to ask for a reduction in the dex. I know everyone I different but this is the 3rd day off dex now and I still feel rotten, also seem to have some numbness in my lips…thalidomide I guess. Seem to have wildly fluctuating pulse rates too from 45 to 80 so hope to see a doctor Monday to try to sort out just what is going on. Did our SCT go ahead?
Carol
Tim thanks for this information. My cancer markers are quite low I believe….iga 17 lambda light chains 435 and I explored with the registrar at Ealing Hospital about doing less cycles of CTD if I responded well. She indicated that they usually do the 6 cycles but boy am I going to be fighting for less! I am only in week 3 of treatment and have just had another 2 horrendous days of dex withdrawal pain, this time accompanied by stomach cramps as well. I am finding taking these drugs very difficult psychologically especially on the chemo day. As well my warfarin level is still too low so I am still having to do the daily stomach injection of the anti coagulant. From healthy ( or so i thought) to hell in 3 short months….it is all too much!
I understand about the dex I had to stop myself dusting at 3:30 this morning then thought about preparing the veggies for the roast lamb I planned for lunch. Somehow sanity overcame the dex delusions and I settled down to await the dawn with a hot cocoa and iPad. Gotta love/hate the dex. Dreading Wednesday though when I will have chemo sickness and dex withdrawal agony on the same day this week.Aaaaaargh! I have heard of dexilicious and dexatitudebut I think I have dex delusions …..thinking I am superwoman for the 4 days then suffering afterwards.
Eve, my having a pathological fracture with no other symptoms (my PP is 18 plasma cells 10% lambda light chains 526) has pushed me straight into treatment so I would worry that if George's fracture was pathological he should be receiving radiotherapy at least, if not the full treatment. I guess if it was a normal break then there would be less urgency to treat but the fact that the break hasn't healed in a relatively young man is worrying with myeloma talk in the background.
George, was your initial fracture due to a fall or other impact or did it just break with no real impact (a pathological fracture)? When I presented to A&E on Easter Sunday the X-ray showed no break. Without looking at me or the huge lump already evident in the middle section of my collar bone, he said they would just give me a collar and cuff and send me home to return in 6 weeks. Now I damn well knew something serious had happened so in my brash Australian way and despite being in excruciating pain, I whipped off my shirt and basically said "You have got to be kidding…look at this, I am not going home!" So he finally looked at the massive lump on my collar bone, called another doctor and within the hour I was in the Clinical Decision Unit, had been seen by an orthopaedic doctor, dosed up on oromorph and spent the night awaiting admission. That meant I was admitted on April Fool's Day -see myeloma already having the last laugh at my expense! Confession here …….there were a few tearstoo, mainly of frustration as we had been sat in A &E with no pain relief for more than an hour before any treatment.
The moral is don't be afraid to speak up, ask questions, shout or cry if you must, but without my loud mouth I would have been sat at home for 6 weeks waiting for a collar bone to heal, which never would have happened as it was being devoured by myeloma gremlins.