Just found out my hyperstension is a result of kidney failure that was caused by LCDD. This is all so new. I am a 37 year old female and everything I read says it happens to men in their 60-70's. Just wondering if anyone has experienced or knows anyone who has??

Hi My wife was diagnosed at age 46, she is now 54 and is going to have a kidney transplant. So we have learned a lot about the disease. My wife responded well to steroids, so make sure they try prednisone on you. If you want us to help you, we need to have an idea of your creatinine, amount of kappa and lambda in your blood, urine and so on and where do you live in the US. Good luck JPB

I'm 41 and was diagnosed with LCDD in 2007, and Velcade treatments for 5 months then a stem cell transplat. Suffered end stage renal failure and have been on kidney dialysis since september of 2007. I'm on periteneal dialysis now but was on hemo for 6 months. Please feel free to ask anything. Scott

Wow thanks for the info, even though i dont speak the language of lcdd im sure i will learn it quick I am in Vancouver, BC Canada First meeting with hemotologist tomorrow, my kidneys right now are at 25% and they have already said dialysis for sure

Hi Scott Were you on dyalisis before the stem cell?

Hi Monkey 25% is quite good, the important is to keep it like this. Good luck today.

No I was not on dialysis prior to the stem cell transplant. My kidneys failed about 3 days after I got home, the High Dose Chemo did them in. We knew that was a very real possiblity going in to it. Prior to the SCT they were treating my nephotic syndrome with meds, that really was not going well. Anyway when my kidney's failed the put in an emergency hemodialysis catheter in. I did hemo for about 6 months then switched to periteneal dialysis (PD), I'll tell you at the time I had just turned 39 and my daughter was 5, hemo just wore me out, PD is the way to go my life now is about as normal as it can be. And I really thing the PD helps keep the LCDD at bay. Just my thoughts but the other two people I know with LCDD are not on dialysis and they struggle a lot more then I do, It probably helps that I'm 10 years younger but still, this thing may not be able to be beat but I'm not letting it win just yet.

Well today was Bone Marrow Biopsy day. God that hurt! I believe at this point they are screening for myloma as well. Iget the results next tuesday and they hope to start me on steroids the following week. They are also talking about Valcade. They need to do a stem cell translant so they are still talking about how aggressive they are with the first chemo attack as they dont have any cells yet. I dont understand any of the dialysis stuff that Scott is talking about but im sure i will learn it quick. The doctors are baffled because of my age, so they are thinking of trying some clinical trial drugs! I say whatever just cure me!

Yeah it kind of sucks being so young with this. Velcade was fine not really any side effects from it except toward the end when I started getting neropothy in my hands and feet. I did 5 months of Velcade 2 a week for 2 weeks then off one. worse thing was the Dexemethasone, Dex is a steriod an it not pleasent on those days. But it could have been much worse. At least my doctor's go the insurance company to approve IV Velcade right off the bat saved me a month on the steroids that won't do anything for you anyway. I sure wish there was a cure but I'd take living long enough to see my daughter granduate high school.

Tomorrow is Monkey's Big day. We get the Biopsy results and Bone scan results. We us luck!!

Good luck with the results. To be helpful, it may be important to know your creatinine, your kappa lambda ratio (If they measures that in Canada, it's 2 years old in the US), percentage of cells they found in your biopsy that are consistent with LCDD. Protein level is also good to know I am guessing you were diagnosed based on kidney biopsy, right?, Best luck

Best Wishes.

Well good news, they did not detect any Myloma from the bone biopsy They dont have the kappa results back yet. They have requested special funding for IV velcade which they expect will be granted and dexamethasone. It all starts next monday 2 x per week for 2 weeks then one off, they are talking about 3 rounds, i still have to get a stem cell replacement, perhaps in January? It appears i am the youngest ever diagnosed at 37, the only thing they are unsure of is it will bring on menopause so they are confering with another team in ontario I have my age and prior clean bill of health working in my favour!

Good to hear you don't have MM. Scott and Money what was the rationale given to do Velcade before stem cell? Did they try to eradicate the abnormal cells with Velcade and see if they could do that without Stem Cell Transplant or did they just want to reduce the amount of abnormal cell or some other rationale? Thanks

They are trying to slow down the kidney damage, they know dialysis is coming but they said they are trying to delay the failure by attacking the lcdd prior to the stem cell. I will be having "auto....." stemcell replacement Velcade is very new for us up in canada, our health system is more regulated, so unfortunatly all the good trial drugs are in the states

Scott are you eligible for a kidney transplant?

BJP how long has your wife been waiting for a transplant? Does or had anyone kept a full time job through all this?

Monkey, My wife has worked 40 hours a week until a few weeks ago. At times it was hard as she was not as strong but she is a survivor and did it. The main treatment she got was prednisone, and we are almost certain that using prednisone and not receiving more serious chemotherapy was what has kep her out of dialysis for 7 years. So in her case, we are almost sure that steroids save her kidney and slow down her disease. Everytime she tried to get off the prednisone, her creatinine went up, and went down when she got back on it. She was also lucky that her body responded well to the steroids and didn't have too many side effects. So our experience is different from Scott. We have visited major medical centers in the US and although they all recommended stem cell transplants, they all thought that in her case, trying steroids was a very beneficial intervention. The original plan was for her to have autologous stem cell transplant but for complicated reasons, this process was stopped (it was almost 7 years ago) and she has been treated only with low dose steroids. Something to think about. Again, when you have the number please email me your creatinine and kappa lambda ratio.

I'm not eligable for a Kidney transplant for another year. 3 years from the Stem Cell Transplant. I've talked it over with my ocologist and nephorolgist and I will probably have my name put on the list but I don't think I well get a transplant. Doing way to good on pertitineal dialysis, figure I just let that run my course and let someone else that can benefit from having a new kidney get one. Way I figure the PD is keeping my LCDD in partial remission just as much as the SCT did. As for the Velcade treatment basicly the same reasons trying to save my Kidney's it wasn't work well and the High Dose Chemo for the SCT just did them in. From talking with my doctor's at Siteman cancer center here in St. Louis and the doctor's at Dana-Farber in Boston this is the only treatment they have. The one thing I will say is don't go on HEMO do PD. I didn't have a choice had to go on emergency Hemo 3 days after I got home from my SCT because my kidney s just failed. Was in Stage 5 Renal Failure they have bounced back just a bit but still below 20%. But PD is the only way to go and have an almost normal life. With PD I still work full-time albeit I now work 5 days a week from home. I could not even do that when I was on Hemo, three day's a week on Hemo and I was always exhausted. Anyway give it some thought your not much younger then me and I'll tell you it's worth it.

FYI, You can also find me on FaceBook just look for Scott Vargo from St. Louis MO.

Thanks scott

How's everything going been awhile since anyone has posted, hope all is well.

Monkey is doing great. Received third chemo treatment on Monday. She has had no side effects yet. Hope it stays that way. The doctor told us yetserday that she does have myeloma. (Not a lot, only 5 to 10 %) Treatment stays the same. This Thursday will finish round/cycle one. Next week ( the off week ) they are going to do blood work and 24 urine sample so they can start tracking the results and see if the treatment is working, improving or staying the same. How's everyone else doing?

Doing good, after about the 2nd round it get's easier. The worst part is the Dex makes you hyper, I always lost my voice a day or so after starting the Dex. Only side effect I ever had was being tired by the end of the week. It does get better by the fourth month I had to start watching for neropothy in my fingers and toes, I'm still dealing with that but not to bad, anyway give monkey my best wishes and prayor's

Well, saw the oncologist this past Wednesday. Both Kappa and Lambda ligh chains are down from last quarter as well as my protien levels. That's the first time all three have drop so things are looking good. Talked with the doc about kidney transplant options and we are thinking I'm going to get my name on the transplant list in 2010 but try and do PD for as long as possible...no use rocking the boat. Monkey hope your hanging in there, did they put a port in or are you getting a stick each time you go in?

Well, this is great news. What is your level of Kappa Lambda? They should put your name on the list as soon as you can, as you can always say no. It takes a long time We have been waiting for a long time for a kdiney Best luck

Hello, sorry I havent kept up but I know Happy was posting my progress, its really wierd because the process has been without any side effects. I feel like I am on vacation, and still have lots of energy, well as much as I had before. They did not put in a Hickman. they do a IV every time, it takes longer to set the iv than it takes to administer the Valcade. Happy and I go see the stem cell Dr on Monday, and hopefully get the results from cycle one. So I will update at that time. Scott, Great news about your results, that gives me allot of hope. Take care and have a good weekend, Barbera, I will try and post kappa lambda ratios after monday Hopefully I can take a peek at my charts.

Barber I don't remember I believe somewhere around 4.2 on the lamda's cant remember the kappa I'll have to remember to get that in March. That's the same thing the doc said get your name on it and we'll just see how things go. Monkey, that's the same way I was, you do start getting a little tired toward the end I know when I hit the 5th cycle it was getting very old, plus my viens in my hands were shot and they had started up my arms. Not to mention the lab sticks and the procrit shots. Felt like a junkie. Only side effects I had was lose of taste from the Dex and it also made me loose my voice started about the 2nd cycle would go almost totally horse the second day on the Dex and clear up just before me next round. I think my wife loved that part. She had piece and quit for a change :)

Well Happy New Year everyone. Be a strange start, whole family got sick right after Christmas but finally starting to recover right before I go back to work. I hate when half your vacation is taken up with being sick. Anyway all is well here and looking forward to a great 2010 for all of us. Scott

Happy New Year to everyone, we are still waiting for transplant.

Happy New Year everyone. Well I now have a date for the stem cell collection. They will be pulling them in late January. They cant do anything here in Feb because of the olympics. The hospital is smack in the middle of all the :chaos: Then I will be doing a couple more Dex rounds as I have asked them to delay for one month as I am in my sisters wedding and didnt want to loose my hair or be sick. The stem cell transplant will be first week of April. I am actually heading back to work for now as I am going stir crazy. better to keep my salary at 100% while Im healthy enough to work. I will let everyone know how the stem cell collection goes but other than that I should be off line until April.

Good luck with the harvest, it took only 3 days for me to get 6 mil cells so hopefully it goes quick for you.

Hi Moneky How are you doing? How is everybody doing here?

Hello, Moneky, My hubby, age 75, was dx with LCDD June 2010. Due to age he is not eligible for stem-cell. He's doing hemodialysis 3 days a wk. He tried velcade/dexamethasone until neuropathy caused him to stop that. It did knock his light chains down considerably. A couple months after he stopped the velcade, he began melphalin and dexamethasone. One week on, couple weeks off. The first week dropped the light chains and we're waiting to see how this second series went. Prior to this disease he had been an active busy man. This has really knocked him down. Lost a lot of weight. Much fatigue.

If anyone is still monitoring this forum, I am 49, female and just diagnosed with kidney failure (8%) brought on by lcdd. 2 weeks ago, I thought I was a healthy woman. I still feel like a healthy woman. Have started velcade by sub-q injections along with the dex. Only have to take the dex on day of velcade. Getting pd catheter next week for the dialysis. Absolutely no symptoms, just routine blood work showed the kidney issue. Would like to know how the rest of you are progressing.

Sorry to hear Blondie. Very sinilar to what happened to my wife, as I wrote earlier dexa folllowed by low does prednisone was sufficient to help her for the last 10 years. The data indicates that Velcade should be very helpful. Best luck

Would like to see more activity here...but I guess the LCDD is pretty rare. My 76-yr-old hubby was dx with LCDD a little over a year ago after a high creatinine reading during a routine physical. The sad thing is that the reading had been elevated the previous year and the doc did not notice nor follow up. A year ago he tried velcade (major neuropathy) and then melphalan. His light chains dropped considerably but are rising again. The Onc's opinion was that his disease will not affect other organs...and since the kidneys are already non-functioning, they discontinued the chemo. As I mentioned a year ago, he's lost his kidney function and is on hemodialysis. We visited Mayo in Rochester and their review was "nothing can be done except dialysis". He is too old for stem cell. And a transplant is out of the question due to lcdd. He has one plus. He is able to still pass urine so it makes the kidney diet a bit easier. Barber, What was the reason (and the benefit) for the low dose prednisone? To help the kidneys continue to function??? Thanks for any response.

It's a conjecture, but quite clearly the prednisone helped both maintaining kidney function or more accurately slowing down decline in kidney function and perhaps reducing light chain production. We saw quite clearly that after stopping the low dose prednisone, kidney function deteriorated more quickly. WAe also saw over time a decrease in light chain production. Re. the latter one can't know if it was the course of the disease for her or it was the result of the low dose prednisone. So the doc don't really know why it helped, we know it is very likely that it helped. The program at Boston University is another place to consult in addition to the Mayo. I hope this is helpful Best luck