The Leukemia & Lymphoma Society - Fighting Blood Cancers
22 Replies Latest reply: Jun 4, 2013 12:28 PM by WeatherNurse13 RSS

Plasma Cell Leukemia/Myeloma

splasier Registered Users
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Hi, i have been reading about all discussions and types of Leukemia. I am hoping to find someone with my type and who had an auto stem cell transplant. My type is so rare, i haven't been able to find anyone. I like hearing from everyone no matter what type Leukemia they have. Can anyone help?

  • Re: Plasma Cell Leukemia/Myeloma
    branchb Registered Users
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    Hello Steve! I hope you are doing well! My husband(44 yrs. old)  was just diagnosed with Plasma Cell Leukemia in December 2010.  He has just undergone his first stem cell transplant.  The doctors would like to do a Donor Transplant on him as well. I hope that we can be in touch, as this is such a rare Luekemia and I am trying to be resourceful as possible.

    • Re: Plasma Cell Leukemia/Myeloma
      splasier Registered Users
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      Hi Brandy, yes it is very hard to find anyone with (PCL). I just found a man 2 weeks ago in the state of Washington. He is the first person i have found since i was diagnosed Sept. 2009. Also very little info about it on web sites. I am happy you found me. I get frustrated when i can't relate with anyone. So far, i have just had my own stem cell transplant last May 8th and i have been in partial remission since. I will be getting my blood work done on March 15th and will see my Doctor the following week for results. It has been 2 months since i was last checked because i lost my health insurance. My Doctor seems to think this will be okay every two months because my counts have been so good. I feel as good as can be expected. I start getting tired by 2 in the afternoon and relax. The Revlimid makes me dizzy feeling and i get chest pains sometimes. Also, i stay home most of the time, with this being flu season i don't want to catch anyones germs. I do my shopping in the early mornings and whatever else has to be done and stay home the rest of the day. I totally keep away from children. I live alone in an apartment complex and sit on my patio and talk to neighbors when they walk by. My dog, Kirby, keeps me company and i walk him for my exercise. How is your husband feeling? My first 2 months i was pretty forgetful and would get confused, but that has pretty much cleared up now. I haven't been getting on here much the last week because of no one to compare notes with. My chemo and meds are different from everyone else as you know. Well, answer me soon and e-mail me anytime you want to. It might take me a day to get back with you. I have a friend who comes over and uses my laptop almost daily. Ask me any questions you want to, i am open, and will answer the best i can for you. Again, i am glad you found me. Steve

      • Re: Plasma Cell Leukemia/Myeloma
        splasier Registered Users
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        Hi Brandy, a little more info about me. I did chemo for 6 months before my transplant in Tucson, AZ. I also have a frozen bag of good stem cells at UMC Medical Center for whenever i will need them again. Oh, i am 60 years old now. My cancer doctor here in Bullhead City doesn't like to talk much about my future. So i take it one day at a time.

      • Re: Plasma Cell Leukemia/Myeloma
        branchb Registered Users
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        Hello Steve! Thank you for your response...

         

        I know how you feel, not being able to relate to anyone who has this leukemia.  I am sorry to hear that you lost your health insurance. Scott had no signs of PCL, nor did he have multiple myeloma prior to that.  In November 2010 Scott had began having cramps in his leg. One morning we went to the emergency room because the pain became unbearable, and the doctor there referred us to a neurologist.  The neurologist suggested Scott do an MRI, and when the results came back, they found cancerous lesions up and down Scott's spine. Prior to being diagnosed with PCL, Scott was in great health, I mean he never got sick!!! It was a total shock to both of us!!! When the MRI results came back, Scott was immediatley admitted to the hospital. At first they told us, it looked like lymphoma, and then they said multiple myeloma.  The Dr.'s were pretty shocked that it was MM because of Scott's age, they told us MM is usually seen in people 55+.  It wasn't until they performed the Bone Marrow Biopsy that they were able to confirm that is was PCL. We were devestated.  All the research I did was so negative and discouraging, but then I began to speak with the nurses and doctors who were very encouraging. Scott and I also have a strong faith, which has allowed us to feel alot better about this situation.  As I told you Scott has done the stem cell transplant and is awaiting the donor stem cell transplant.  We are here in the New Jersey area and are about 20 minutes from New York City.  We have spoken to several doctors who are very optimistic about Scott's health, and two doctors have even told us he can be "cured" by doing the donor stem cell transplant. I am curious to know what exactly did your doctors tell you about the donor stem cell transplant and what is their reason for not going fourth with it? I have actually contacted(about three months ago) the man whom you are referring to who has PCL and lives in Washington. He is a very nice man and very helpful.  He had a donor stem cell transplant (as well as his own stem cell transplant) two years ago, and has been recovering slowly but surely since then! The only thing about the donor stem cell transplant, is that our insurance company will not cover the donor search! So I have been doing some fundraising, and we are getting alot of help! Scott is being seen at Hackensack Medical University, where they have treated the luekemia very aggressively. Scott was diagnosed the 2 week of December and they started the chemo 2 weeks later.  It was a 24 hour chemo called a "VDT Paste".  He did chemo at the hospital and then went home with a back pack and an IV connected to him, this went on for one week.  Five weeks later he did his second round of chemo (the same process), and 2 weeks after that we did the stem cell transplant. It has been such a fast process! The first two chemo's did not make him sick, but the chemo given to him right before the transplant really took him for a rough ride. What kind of chemo did you have before your transplant? The chemo they gave Scott was one hour and run through and IV.  Right now he is 1 week post transplant and is feeling pretty good, but has been having stomach aches. Are you in any pain right now? He gets tired throughout the day and I believe he experiences confusion as well. We went for a check-up yesterday and all of his numbers were up, so that was a good thing. I am so glad that We have someone to relate too!   Throughout this whole process Scott has been VERY positive and in good spirits. I also found out that alot of the information on-line is outdated! So don't be discouraged! Remember we are living in times were technology is advancing everyday!!

         

        Speak to you soon!

        • Re: Plasma Cell Leukemia/Myeloma
          splasier Registered Users
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          Hello Brandy, nice to hear from you.....................here is more in-depth history about my journey. In 2004 i kept getting anemic and fainting, so i went to ER first and they only did minor lab work and told me to go home, eat a better diet, and see my primary Doctor for a follow up, which i did. Dr. Malik basically told me the same and to come back if i had anymore trouble. Well, i still was dizzy and fainting! Dr. Malik ran more extensive lab work and diagnosed me with Monoclolar Gammapathy Of An Unknown Origin (Very rare blood Disorder) Dr. Malik sent me to Dr. Ghani, my Cancer and Blood Specialist here in town. Dr. Ghani ran very extensive lab work and my first bone marrow biopsy of many. Dr. Ghani confirmed Dr. Malik's diagnosis and told me i had a higher chance of going into bone cancer or blood cancer of some form than a normal person. So, I saw Dr. Ghani twice a year for lab work and bone marrow biopsys, then down to once a year. Well, August of 2009, i was dizzy and fainting again. Same thing, go to ER be told to go home and eat better. My 3rd trip to ER the Hospital kept me for 3 days of tests, released me and told me to go back to Dr. Ghani for a follow up. In the mean time, I was down to 145 lbs. and very weak. My work sent me to ER a 4th time on Sept. 19, 2009, and finally ran every test you can think of and told me i had a form of Leukemia. I was sent by ambulance to a Hospital in Las Vegas, NV, for further tests that day, also i needed 2 bags of blood, and the Specialist said it was PCL and i had my first Chemo that night. I stayed in the Hospital for 3 weeks and did my first round of Chemo there. I was only sick for my first round and was good after that with the other rounds. I did my chemo with Dr. Ghani once a week for 6 months. i also live next door to Dr. Ghani's office which makes it easy for me. I went to a Specialist at Scripps Hospital for consultation. That Doctor suggested a bone marrow transplant to treat PCL very aggresive. A bone marrow donor was found, and i lost my insurace from work a month later! My 90 day leave of absence was up and i had to voluntarily quit work. Well, Scripps was canceled, and i signed up with AHCCCS thru the state of AZ. AHCCCS is like welfare or medicaid here in AZ. I got medical for free because i could not work. AHCCCS said i had to stay in AZ for a transplant and Dr. Ghani sent me Dr. Yeager in charge of the Transplant Unit at UMC Cancer Medical Center in Tucson, AZ. Dr. Yeager said "NO" to a bone marrow transplant and to save that for the very last. So, Dr. Yeager said to do an Auto Stem Cell Transplant which would be much easier for me and be the same results. So, that is what i did and why. After my 2 weeks in the transplant unit my sister, Peggy, and i stayed in an apartment there by UMC for 3 weeks and then i was sent home. My sister lives in Seal Beach, CA and i am in AZ by myself. because of the AHCCCS program, must stay in AZ. Well, Dec. 27th AHCCCS informed me my SSDI check is too much money to stay on their program. My medical was terminated Feb. 1st. because i was $200 dollars over the limit for a single person. My Doctors are very helpful and i feel like i can trust their judgement. I keep an open mind and have a good out look about my health and future. My side effects from transplant were the confusion, dizzyness, Blurred vision, which cleared up after about 2 months, also, stomach pain, which i still have. I never ran a fever or got sick until this last month i caught a cold. I only drive local. Dr. Ghani says no long distance driving. I do everything here myself and feel quite able to. My nephew, Gary, comes by once a week and checks on me. My neighbors check on me daily. I am in a morning coffee club here at my complex. It isn't bad at all. I feel comfortable here. My sister and brother live 4 hours from me. The only thing, here in Bullhead City, there is no cancer support for patients other than for women with breast cancer. There is a Relay For Life here the first weekend of May, which i will participate in. Also, i should have insurance hopefully by August 1st.I don't want to move to CA and start all over with my life. I love AZ and the pretty sunrise and sunsets. It is a little hot during the Summer (125) on occaision. Right now my only meds for Leukemia are Revlimid 15 mg, a daily maintenance pill with chemo in it,and Acyclovir 400 mg, to fight off viruses. Oh, i forgot i was sent to a Neurologist and had the body scan. My back is very weak from the Myeloma. Also, i have neurophathy in both legs and feet with "right foot drop" and i take Gabapentin 400 mg for the nerve damage. I used to walk with a cane, but now i can walk slowly on my own. I don't feel sorry for myself at all now. I did a little at first, but got over that quick. I did therapthy for my back and i never saw where it helped me much. Oh, the Revlimid has some very bad side affects to it. Chest pain, like mini heart attacks, stomach pain, kidney pain. Also, sometimes i get very nervous, like panic attacks. Does your husband have any of these symptoms from the transplant? I better stop for now. Need to rest some. Keep in touch. You can call me if you wan,t or e-mail me, splasier@gmail.com.  Later, Steve

          • Re: Plasma Cell Leukemia/Myeloma
            splasier Registered Users
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            Hi, i forgot again, sorry you have to pay for a donor because of your health insurance. Money matters are bad, and not good for Scott's health or yours. My sister and i call my Leukemia " my journey" to were, i don"t know. LOL  But do take care and believe in miracles. I do. My legs get dry and itch from medications and cream does help. My sister never wanted me to do any fundraisers because she figured i would be doing all the work and get too tired. AHCCCS paid all of my transplant costs and housing in Tucson so i was very lucky with that. May 8th will be my one year birthday (Transplant). I am suppose to be in Tucson for lots of expensive tests. I have to find out a cash price to see if i can do it. My sister helps me out, but i don't know if she will be able to afford it or not. We will see what happens! Scott's type of chemo treatments i don't know about. Sorry to say. I went once a week and was hooked up to an I.V. for 1 to 2 hours. I had a mix some weeks called a "cocktail" and some weeks just one type. I had Velcade, Cyclophosphamide, Doxil, also prednisone. There are a couple of others i can't remember off hand. I will need to look them up. Also, when my white blood cell counts went down while on chemo, i gave myself shots of Neupogen in my stomach to build the count back up. Bill, in state of Washington, is very nice. He told me to call whenever i want, but it sounds like he is pretty busy with his company and travel. We laughed, because i do eat roman meal bread. Well, take care for now, Steve

  • Re: Plasma Cell Leukemia/Myeloma
    branchb Registered Users
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    Hey Steve, I hope you are doing well!  Sorry I didn't get a chance to write you back soon enough! Scott has developed a rash on his face, neck, and upper body. I was wondering if this happened to you after your transplant? I know a rash for a DONOR transplant indicates "graph disease", but he hasn't had a donor yet, only his own stem cells.  We are going to the doctors on Monday, but just wondering if you have any insight on this?  Other than the rash, he has been feeling well! Talk to ya later!

    • Re: Plasma Cell Leukemia/Myeloma
      splasier Registered Users
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      My second week after transplant i had a rash and hives for 3 days. I used calamine lotion and a prescription to stop the itching. The Doctors said this was normal for a transplant patient. Keep me posted. I know you are very busy with Scott right now and wish him a speedy recovery. I go this coming Tuesday for my latest blood counts. Steve

      • Re: Plasma Cell Leukemia/Myeloma
        splasier Registered Users
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        Hi Brandy, I got my blood count results today and they are excellent! I also found out i can have my one year evaluation tests done here in Bullhead City and will not have to go to Tucson in May. That also was great news. Now i need to find out how much tests will cost me. Steve

  • Re: Plasma Cell Leukemia/Myeloma
    branchb Registered Users
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    Hey Steve! I am glad to hear that you are doing so well & dont have to travel far!!! Do you get a check up for your plasma cells? Also, did the doctor say you just have PCL or Multiple Myeloma as well (forgive me if I've asked you this already)? You were right, Scott's rash was a result of the transplant. The doctor said it was nothing to worry about, and to just use an "anti-ich" over the counter cream.  On Monday he had a treatment( I forget the name of it), sort of a post-transplant bone marrow cleaning.  That too went well, he just had a few side effects; bone aches, teeth sensitivity, and insomnia. Right now the hospital is just searching for a donor, and it feels like forever (all though it's only been a few weeks)! Scott is still keeping good spirits, all though he does have his days. Talk with you soon!

    • Re: Plasma Cell Leukemia/Myeloma
      splasier Registered Users
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      Hi Brandy, yes i do have Multiple Myeloma and i take Revlimid 15 mg once a day and it is for both anemia and Myeloma. It is has some very bad side effects but Dr. Ghani says i need it to keep doing well. It is like  8,000.00 for 28 pills! I am getting it free from Celgene Co. because i have no insurance. Some of the side effects are chest pains like a mini heart attack, I have one about every two weeks now, dizzyness, stomach cramps, dry itchy skin, not much of an appetite. Check Revlimid out on your web search. I have to take a telephone survey at the end of each bottle before it can be refilled, and it is delivered by Fed-Ex. Also, couples have to be careful with sex and a woman can't get pregnant because it can cause bad birth defects. Last Nov. there were no signs of Myeloma getting worse. My back gets sore easily and i lay down and give my back a rest. I will be having full body x-rays in May. I never had a bone marrow cleansing. Is that painful? When i was going to have the bone marrow transplant at first, a donor match was found in less than 4 weeks. I hope Scott will be as lucky. Keep me posted. I will most likely have my Plasma Cell count done in May. I put a picture of myself on my profile. Check it out. I am a little heavier now though. Does Scott gain weight? I have gained 75 lbs since my transplant! I was way to skinny though. Alot of my weight gain is from all of the steroids. I eat small meals and sometimes forget to eat. I enjoy hearing from you, Steve.

      • Re: Plasma Cell Leukemia/Myeloma
        branchb Registered Users
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        Hey Steve! Hope you are doing well! I haven't been able to communicate as much, because we have been so busy! Scott is doing great. We are going to the doctor tomorrow and praying and believing for good news!  We will find out the results of his bloodwork, and see how well the transplant has responded to the cancer. I will let you know how everything goes.  Whats new with you? Keep in touch &Talk with you soon!

        • Re: Plasma Cell Leukemia/Myeloma
          splasier Registered Users
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          Hi Brandi, Happy to hear from you. Things are going good for me health wise. I go tomorrow for blood work and see my Doctor next week for the results. I saw my Neurologist last week and she says my nerves in my legs seem less responsive to her. I have Neuropathy in both legs and feet. My right side is the worst. I take Gabapintin for them. I made it three times around the track for the Relay For Life at my own pace, but not all at once. I am so happy Scott is doing so well! I am sure he will get good news. My Brother, Dave, is coming from CA June 2nd to visit for a week, so i am looking forward to his visit. Dave was last here over Christmas time. Well keep me informed on Scott's progress and i wish him good news! Steve   

          • Re: Plasma Cell Leukemia/Myeloma
            splasier Registered Users
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            Hi Brandy, my 6 months of no insurance is up Aug. 1st and i am signing up with PCIP health insurance at PCIP.com. I also called LLS yesterday and signed up for help with copays and medication programs. This will be a big help for me. I am feeling fine and will see my cancer doctor in August for lab results. How is your Husband doing?

            • Re: Plasma Cell Leukemia/Myeloma
              branchb Registered Users
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              Hey Steve! So nice to hear from you!!! I am glad that you are doing well. I hope everything works our for you with the insurance.  Scott is doing great! He is actually going in for his second transplant in a couple of weeks. The doctors are going to do his own stem cell's (again) until we can find a match.   I will let you know how everything goes! Talk to you soon!!

              • Re: Plasma Cell Leukemia/Myeloma
                splasier Registered Users
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                Hello Brandy, Well i have my medical insurance and i have applied for a grant from LLS. I should be hearing from them soon. I am still able to get my Revlimid 15mg free. So, with insurance things are looking up for me. I don't see Dr. Ghani for lab work until November. I am feeling good and labs have been coming back good. Sure has been a tough  road for me. I turned 61 on 9/11 and my 2 year anniversary with PCL/Multiple Myeloma is on 9/19. I see my Neurologist on 9/21 and will be getting scheduled for nerve tests for my legs and feet. My neuropathy is still with me. I walk like a duck! LOL  Well i hope things are still going good for Scott. Later, Steve

                • Re: Plasma Cell Leukemia/Myeloma
                  splasier Registered Users
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                  Hello, I just found out December 6, 2011 that i am in full remission! I am so happy. It has been a long journey for me.

                  • Re: Plasma Cell Leukemia/Myeloma
                    jagladysk8 Registered Users
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                    Hi Steve,

                    I have also been diagnosed with plasma cell leukemia. I am 49 years old,I have never been a sick person, never even had a bad cold. In April or May  one my left arm started hurting, i just figuree I had pulled a muscle since I had planted my garden. I didn't tink much about it because I figured in a few weeks my arm would be ok. Needless to say it wasn't, it got to the point that I couldn't lift it. I still didn't think it was as bad as it is, figured torn rotor cuff so I gave in and went to the dr the first of June. The ortho thought the same thing- torn rotor cuff- so he gave me a shot of cortizone and sent me home, told me to come back in 2 weeks. Well before the 2 weeks was up I went to the ER and talked them into doing an x-ray of my arm. The x-ray showd multiple fractures nd bone lessions so they referred me to an oncologist. June 29 I was diagnosed with PLC and admitted into UNC hospital the first of July. I had my first round og chemo and surgery on my arrm while there. My chemo is VDT PACE. I have had 3 rounds of that now and getting ready to do an auto stem cell transplant. My bone marrow biopsy last week showed the cancer cells are much better than when diagnosed. I am a little uneasy about an auto transplant when I still have cancer cells, I just hope they know what they are doing. originally we was going to do the allo transplant, i'm not sure why they changed their minds. I just hope this auto transplant puts me in remission and this PCL never comes back. Is there any info that you could give me to help me out? How are you doing? How long ago did you have your auto transplant and is it the only one you have had? Are you still in remission? I hope this finds you in great health. Best of luck on your journey- Connie

                    • Re: Plasma Cell Leukemia/Myeloma
                      splasier Registered Users
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                      Hi Connie, I sent you a private reply earlier today. I hope you got it. If not, let me know. I just turned 62 this month. I was 59 when i had my auto transplant. 3 years Sept. 19th when i was diagnosed. I have been lucky! I have never had broken bones or lessions. I learned  to trust my Oncologist and his decissions about this very rare Leukemia. When i was diagnosed three years ago, i was very anemic and lost a lot of weight. I was in and out of ER for over a month complaining about fainting and being very tired. My boss sent me home from work because she said i was fading away and looked to pale. That same day ER Doctors thought i was an alcoholic or a drug user because all of my organs were shutting down. That night after more extensive tests i proved them wrong, and was diagnosed with PCL. You can call me at home anytime you want 928-758-9620 or email at splasier@gmail.com. I'm pretty much home most of the time since i don't work. It is just me and my dog, Kirby, and some very friendly neighbors. My life is good now and i am at peace with my Leukemia and future.  Have a great day, Steve

                      • Re: Plasma Cell Leukemia/Myeloma
                        jagladysk8 Registered Users
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                        I had my auto transplant on Oct 24, 2012. I have had issue after issue since then. I broke out in a bad rash and high fever on Thanksgiving and had to be hospitalized. the next day I coded on the nurses nd was in the ICU unit for a week. I was sent home and broke out in the rash again just before Christmas but the fever remained under control so I got to stay home. I am now almost 4 months out and just this week I broke out in the rash again. I started my maintenance plan last Thursday that consist of taking Revlimid 10mg for 21 days- a week off and then start it again, an injection of Velcade every Thursday(with a week off) and 20 mg of Dexamethazone every Thursday. I do this for the next 3 years to try and stay in remission. They are thinking I may have an allergic reaction to the Revlimid so they had me to stop taking it on Tuesday to see if my rash gets better (it hasn't). Yesterday they with-held my Velcade  and Dex as well, just incase they are the curlpits of my rash. I have to go back on Monday so they can look at the rash again. When I say rash- my entire body is covered with raised red bumps (some tiny ones and some run together creating a big red mass of bumps. My entire back is covered with them. Thanksgiving they biopsied 2 of the spots were the rash was. The test results came back showing 2 different things- an alergic reaction to a medicine and grade 1 of graft versus host. Needless to say an auto transplant patient should not get GVH, they said it is very rare but not unheard of. They switched all of my meds -or most anyway since they was unsure as to what I had a reaction to and started me on 90 mg of prednisone twice a day slowly tapering me off. I just got off the prednisone on Jan. 31. Just a few days later my neck broke out in the rash but was dried up when I started my maintenance plan on Feb. 7th so I didn't or really forgot to mention it to them until I broke out again this week. I seriously have to wonder if me coming off the prdnisone didn't cause the rash? I have mentioned it and they don't seem to think so. Have you ever seen or heard of anyone else doing like this? How are you doing since your transplant? Are you still in remission Steve? I pray for all of us daily. I hope that this message finds you doing well and still in remission. Have a blessed day> Connie

                      • Re: Plasma Cell Leukemia/Myeloma
                        jagladysk8 Registered Users
                        Currently Being Moderated

                        I had my auto transplant on Oct 24, 2012. I have had issue after issue since then. I broke out in a bad rash and high fever on Thanksgiving and had to be hospitalized. the next day I coded on the nurses nd was in the ICU unit for a week. I was sent home and broke out in the rash again just before Christmas but the fever remained under control so I got to stay home. I am now almost 4 months out and just this week I broke out in the rash again. I started my maintenance plan last Thursday that consist of taking Revlimid 10mg for 21 days- a week off and then start it again, an injection of Velcade every Thursday(with a week off) and 20 mg of Dexamethazone every Thursday. I do this for the next 3 years to try and stay in remission. They are thinking I may have an allergic reaction to the Revlimid so they had me to stop taking it on Tuesday to see if my rash gets better (it hasn't). Yesterday they with-held my Velcade  and Dex as well, just incase they are the curlpits of my rash. I have to go back on Monday so they can look at the rash again. When I say rash- my entire body is covered with raised red bumps (some tiny ones and some run together creating a big red mass of bumps. My entire back is covered with them. Thanksgiving they biopsied 2 of the spots were the rash was. The test results came back showing 2 different things- an alergic reaction to a medicine and grade 1 of graft versus host. Needless to say an auto transplant patient should not get GVH, they said it is very rare but not unheard of. They switched all of my meds -or most anyway since they was unsure as to what I had a reaction to and started me on 90 mg of prednisone twice a day slowly tapering me off. I just got off the prednisone on Jan. 31. Just a few days later my neck broke out in the rash but was dried up when I started my maintenance plan on Feb. 7th so I didn't or really forgot to mention it to them until I broke out again this week. I seriously have to wonder if me coming off the prdnisone didn't cause the rash? I have mentioned it and they don't seem to think so. Have you ever seen or heard of anyone else doing like this? How are you doing since your transplant? Are you still in remission Steve? I pray for all of us daily. I hope that this message finds you doing well and still in remission. Have a blessed day> Connie

                    • Re: Plasma Cell Leukemia/Myeloma
                      WeatherNurse13 Registered Users
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                      I  am a few days shy of 50 and was diagnosed with PCL  10/2012 and received 3 rounds of VDT-PACE, and 1 round of CyBor-D.  My first re-staging showed I was in complete response or remission!  I was ready for  a stem cell transplant.  I had no matches when deciding about the type of transplant, so I had my own stem cells harvested and had my autologous transplant in Feb 2013.  The melphalan chemo I received before transplant made me very sick and was in the hospital for a month, including a round of c-diff.  My transplant doctor told me my next transplant would have to be allogenic.  As of right now, I have only 4 partial matches in the database.

                       

                      Now 100 days post transplant  I am waiting to hear if I am still in remission. My weekly labs have been great.  I did have  a rash for 3 weeks only on my legs and arms. No one could tell me what it was definitively.  Nausea and bone pain were problematic for an extended period.  Since then I found myself in the  hospital for shortness of breath and low oxygen.   So I am finishing up my round of prednisone next week.  It sure helped my nausea, appetite and pain!  Now I will wait  and see how I feel when I am off the prednisone.

                       

                      I will start with re-immunization in 3 months.  Did anyone know if you had any immunity after transplant?  I can't go back to work until I am immune to all the diseases we got vaccines for. Just wondering if I might have residual  immunity. I was also told I cannot have live vaccines anymore. Wonder if that means I can't be around people who get live vaccine. Will we be at risk for infection forever? 

                       

                      Still waiting to start maintenance therapy.

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