My Stem Cell Transplant journey

24

Comments

  • lindary
    lindary Member Posts: 711 Member
    lindary said:

    All Systems GO

    Had my blood test today and it was sent to Rush immediately. Shortly after I got home I got a call from Rush that they are happy with my blood counts so everything will be moving forward as scheduled. (Aint' technology wonderful!)

     

    That Schedule is:

    Thur 3/10 - Rush for training on how to do the injections of the Neupogen and the first shot. Then I will be getting this every morning at 7 am until the harvesting of the t-cells is done.

     

    Mon 3/14 - Surgery to put in a catheter for the t-cell process. Blood test and meeting with SCT as well as a shot of Mozabil to push the "baby" t-cells out of th bone and into the blood stream.

     

    Tues 3/15 - Thur 3/17 - T-cell harvesting. Each day its the neupogen in the am, go to Rush for the harvesting (about 6 hours). If not enough cells are collected it is another shot of Mozabil before we leave and the next day the Neupogen in the am, go to Rush for harvesting.

     

    Fri 3/18 - Admitted to hospital to start high does chemo. That will go for 6 days. (Total stay will be 3 - 4 weeks.)

     

    Thur 3/24 - transplant of t-cells that were harvested.

     

    Then wait for the t-cells to get back into the bone and start growing new blood cells. Once the levels are high enough (especially white counts) I will be allowed to go home. Then we have to be careful so I don't get any germs that will send me back to the hospital.

     

    I've been told to expect that at some point I may need a blood transfusion and/or a platelet transfusion and/or I will get a fever and need antibiotics.

     

    Let the adventure begin!

     

     
    Neupogen

    Today went well. We had decided early on that my husband would give me the shot since I doubt I can stick a needle in myself. My husband has shown that he is getting used to his Chromebook and how to surf the internet. He has been checking out videos on how to give a neupogen shot.

    So at the hospital the nurse walked us through the process and then my husband did it a couple of test runs. He did good. Then they got the actual syringes ready and he did it for real. When I got the neuogen before it was in my arm. I decided that we would try doing it my stomach. I was surpised that it wasn't as painful as in the arm. I did take the Claritin about a half hour beforeso I am hoping the bone pain won't be too great. Starting tomorrow morning I get the shots every morning. They want me to get the shot at 7 am so I have to get up by 6:30 to get 1 syringe out of the frig to wamr up a bit, then get husband up to give me the shot. 

    When I mentioned the Claritin to the nurse at Rush she hadn't heard about it being able to aleviate the bone pain. Yet at my oncologist office they seem to be very familiar with its usage. I should hear tomorrow when the surgery for the catheter will be on Monday. 

  • knaples
    knaples Member Posts: 1
    lindary said:

    Neupogen

    Today went well. We had decided early on that my husband would give me the shot since I doubt I can stick a needle in myself. My husband has shown that he is getting used to his Chromebook and how to surf the internet. He has been checking out videos on how to give a neupogen shot.

    So at the hospital the nurse walked us through the process and then my husband did it a couple of test runs. He did good. Then they got the actual syringes ready and he did it for real. When I got the neuogen before it was in my arm. I decided that we would try doing it my stomach. I was surpised that it wasn't as painful as in the arm. I did take the Claritin about a half hour beforeso I am hoping the bone pain won't be too great. Starting tomorrow morning I get the shots every morning. They want me to get the shot at 7 am so I have to get up by 6:30 to get 1 syringe out of the frig to wamr up a bit, then get husband up to give me the shot. 

    When I mentioned the Claritin to the nurse at Rush she hadn't heard about it being able to aleviate the bone pain. Yet at my oncologist office they seem to be very familiar with its usage. I should hear tomorrow when the surgery for the catheter will be on Monday. 

    SCT

    Hello,

    I am quite interested in your journey.  Mine (Refractory DLCB), has just started with R-ICE (2) and very low counts this week.  There was talk of transfusion, but so far none given, just fluids.  My PET 3/22....Collection on 4/18..SCT scheduled for 4/28 at Moffitt in Tampa. (I am amazed at the number (47) of appointments (labs and tests) that are scheduled)

    Please let us know how you are doing.  This is very scary and not much blogging out there as far as outcomes. 

  • lindary
    lindary Member Posts: 711 Member
    knaples said:

    SCT

    Hello,

    I am quite interested in your journey.  Mine (Refractory DLCB), has just started with R-ICE (2) and very low counts this week.  There was talk of transfusion, but so far none given, just fluids.  My PET 3/22....Collection on 4/18..SCT scheduled for 4/28 at Moffitt in Tampa. (I am amazed at the number (47) of appointments (labs and tests) that are scheduled)

    Please let us know how you are doing.  This is very scary and not much blogging out there as far as outcomes. 

    SCT

    Knaples, there are other people on this board who have gone through SCT. But it sounds like you are wanting to know more details about the process. In that regard you are right, there aren't many blog with details on their experience of SCT. I hope I can provide what you are looking for as I go through this. 

    As to appts, yes there are a lot. I had 3 cycles of RICE last year with the SCT planned in Nov. The SCT plan was changed. I wil say that the RICE probably took more out of me than the R-Chop did. When we started the preparations again this year it seemed like I had at least 1 appt every week. They need to make sure we can handle the SCT. Checking heart, lungs, blood and mind. Sometimes the blood test is just a normal CBC and other times I ask if they have a vampire that needs feeding. 

    Well, Monday I really get into the process. That is when the catheter is put in and I get the first shot of Mozabil. We have to be there by 6 am and probably won't leave until after 6 pm.  

  • lindary
    lindary Member Posts: 711 Member
    lindary said:

    Neupogen

    Today went well. We had decided early on that my husband would give me the shot since I doubt I can stick a needle in myself. My husband has shown that he is getting used to his Chromebook and how to surf the internet. He has been checking out videos on how to give a neupogen shot.

    So at the hospital the nurse walked us through the process and then my husband did it a couple of test runs. He did good. Then they got the actual syringes ready and he did it for real. When I got the neuogen before it was in my arm. I decided that we would try doing it my stomach. I was surpised that it wasn't as painful as in the arm. I did take the Claritin about a half hour beforeso I am hoping the bone pain won't be too great. Starting tomorrow morning I get the shots every morning. They want me to get the shot at 7 am so I have to get up by 6:30 to get 1 syringe out of the frig to wamr up a bit, then get husband up to give me the shot. 

    When I mentioned the Claritin to the nurse at Rush she hadn't heard about it being able to aleviate the bone pain. Yet at my oncologist office they seem to be very familiar with its usage. I should hear tomorrow when the surgery for the catheter will be on Monday. 

    Stem Cell Harvesting

    I have 2 days to catch up on.

    So Monday we had to leave the house by 4;30 am to be at the hospital by 5:45, we got there at 5:30am. Surgery for the catheter was at 7:30am. This was one of those processes where they give you a relaxant before going into surgery. Once I was moved to the table and given oxygen I was out. I woke up as they were finishing up. Then into recovery. I was released about noon but we had to wait around until 3 for a blood test and 5:30 pm for the shot of mozobil. One of the side effects of mozobil is diarreah. Since I normally have constipation it wasn't as bad as I thought it would be. I know my husband got in a few cat naps while waiting and I slept most of the hour drive back home. They perscribed a pain killer and a stool softner since the pain killer can cause constipation. I took one and it knocked me out, or I was THAT tired. 

    This morning we did not have to get up so early. Had quick breakfast, I voted and then headed to hospital. It took about 30 mins to set up. That meant doing a blood test, getting results and then hooking me uo to the machine. The actual process took 6 hours. The person in charge told us about the machine we were using, explaining it was a new version. All it does is pull Stem Cells. They have 2 of these and 2 of the older ones that can also pull platelets. I was the only one getting Apheresis today. 

    So this is 6 hours on a machine and I cannot take a bathroom break or get up out of the chair. I had my work laptop with and was able to log almost 5 hours. I limited my fluids to just sips of water and no food until the last hour. The process was done about 3 pm. Then it was waiting for the results. Of course it takes almost 2 hours. The result, .53 million cells. The nurse says they usually want 2 - 4 million cells and I read online that 2.5 - 5 millon is good. Not only do we need to go back on Wed (which I figured we would) but we also are planning on going back on Thur. 

    That is it for today.

  • paella
    paella Member Posts: 81
    lindary said:

    Stem Cell Harvesting

    I have 2 days to catch up on.

    So Monday we had to leave the house by 4;30 am to be at the hospital by 5:45, we got there at 5:30am. Surgery for the catheter was at 7:30am. This was one of those processes where they give you a relaxant before going into surgery. Once I was moved to the table and given oxygen I was out. I woke up as they were finishing up. Then into recovery. I was released about noon but we had to wait around until 3 for a blood test and 5:30 pm for the shot of mozobil. One of the side effects of mozobil is diarreah. Since I normally have constipation it wasn't as bad as I thought it would be. I know my husband got in a few cat naps while waiting and I slept most of the hour drive back home. They perscribed a pain killer and a stool softner since the pain killer can cause constipation. I took one and it knocked me out, or I was THAT tired. 

    This morning we did not have to get up so early. Had quick breakfast, I voted and then headed to hospital. It took about 30 mins to set up. That meant doing a blood test, getting results and then hooking me uo to the machine. The actual process took 6 hours. The person in charge told us about the machine we were using, explaining it was a new version. All it does is pull Stem Cells. They have 2 of these and 2 of the older ones that can also pull platelets. I was the only one getting Apheresis today. 

    So this is 6 hours on a machine and I cannot take a bathroom break or get up out of the chair. I had my work laptop with and was able to log almost 5 hours. I limited my fluids to just sips of water and no food until the last hour. The process was done about 3 pm. Then it was waiting for the results. Of course it takes almost 2 hours. The result, .53 million cells. The nurse says they usually want 2 - 4 million cells and I read online that 2.5 - 5 millon is good. Not only do we need to go back on Wed (which I figured we would) but we also are planning on going back on Thur. 

    That is it for today.

    HOLY POTTY BREAK, BATMAN!

    No bathroom trips for 6 hours??!  It’s a bare minimum of 3 (usually 4 or 5) for me AT NIGHT, at home.  During infusion, between the Saline and the large amount of water I drink, I’m wheeling my cart down the hall every 20 minutes.  Lindary - are you getting Saline while the harvest is taking place?  Hmmm…urinary catheterization here I come?  Will they even DO that…or do they simply threaten to kick you out, like EST (anybody remember that...never went but friends did…no getting’ up to go pee, by golly!)  I guess if I have no water for 3 hours prior then none during the procedure, maybe I could manage it.  But is that the healthy thing to do....wouldn't good hydration help push out the stem cells?    

    Also I have a question, please:  is it kosher to ask for something more powerful during procedures like Port Surgery or Bone Biopsies?   The “awake” sedation given me for both of those was fentanyl /versed and the amount administered did almost nothing in terms of the pain.  I asked for more during the port surgery and they did (I believe) give me a bit more but it helped only somewhat.   It was, indeed, quite painful and I was very aware of it.   Already worrying about the T cell catheter surgery –    I guess I have a high tolerance for this stuff – does that generally matter or should I just shut up and man up? 

    Paella

     

     

  • lindary
    lindary Member Posts: 711 Member
    paella said:

    HOLY POTTY BREAK, BATMAN!

    No bathroom trips for 6 hours??!  It’s a bare minimum of 3 (usually 4 or 5) for me AT NIGHT, at home.  During infusion, between the Saline and the large amount of water I drink, I’m wheeling my cart down the hall every 20 minutes.  Lindary - are you getting Saline while the harvest is taking place?  Hmmm…urinary catheterization here I come?  Will they even DO that…or do they simply threaten to kick you out, like EST (anybody remember that...never went but friends did…no getting’ up to go pee, by golly!)  I guess if I have no water for 3 hours prior then none during the procedure, maybe I could manage it.  But is that the healthy thing to do....wouldn't good hydration help push out the stem cells?    

    Also I have a question, please:  is it kosher to ask for something more powerful during procedures like Port Surgery or Bone Biopsies?   The “awake” sedation given me for both of those was fentanyl /versed and the amount administered did almost nothing in terms of the pain.  I asked for more during the port surgery and they did (I believe) give me a bit more but it helped only somewhat.   It was, indeed, quite painful and I was very aware of it.   Already worrying about the T cell catheter surgery –    I guess I have a high tolerance for this stuff – does that generally matter or should I just shut up and man up? 

    Paella

     

     

    t-cell collection

    Yes 6 hours. Once they start the machine if the stop it they are done. So I have a light breakfast with half glass of juice. It is an hour drive to the hospital so I go to the bathroom as soon as I get there. The collecting process uses saline but not a lot. I did get thirsty and only took sips of water when my mouth got dry. I did not eat anything until 4 hours into the process and then just a little snack. After we were done it was almost a 2 hour wait for the results so I would eat a sandwich and some fruit. 

    As to pain killers i have a high pain threshhold so I took one pain killer and that was it. I then switched over to tylenol becuase the RX was too strong for me. For every procedure where I get pain killers I get an instruction sheet and on there it says that if the pain is still bad contact them (the surgeon's office) so they can give something stronger. the T-cell catheter surgery was like when I had a catheter put in for the pluerisy. It is still tender 3 days later. I would tell the Dr. what pain killers have you had in the past and the lack of effect. Make sure they know that you seem to have a high tolerance for the pain killers.

    So Tues & Wed the colletion was about the same and the total collected was .63 million. Today we were a few minutes late because of traffic. I don't think I was hooked up even 30 mins when the nurse got a call to stop. I takes about 15-20 mins to completely stop. Shortly after a nurse from the SCT team can in to say that the white cell count was about the same as the last 2 days so they probably wouldn't get many more t-cells today than the last 2 days. The process was kicking the crap out of my platelets (84 on Tues and 37 today). They felt that continuing to try and pull more t-cells would only cause more harm to me. The next plan would be a donor transplant. I will be meeting with the SCT Dr on Monday, waiting to hear when the appt will be. When I read through the blood test results from the last few days I had to look up what some of the tests were showing. There were a few that were kind of scary but my results were good. Then there were the scary ones where the results did not appear good. However I have no idea if lined with some other result it isn't so bad. So I wait for the Dr to let me know what is going on. 

    I am beginning to wonder if I should continue or just take the fact the the PET scan shows no cancer and just do the 2 years of Rituxan. A friend of mine died a year ago after 12 years of fighting cancer. I kind of feel that having the SCT postponed for the second time may mean i should not go through it. Since I thought I was going into the hospital tomorrow I took the day off from work. I am taking it off anyway just to have time to think. 

    Linda

  • Rocquie
    Rocquie Member Posts: 868 Member
    lindary said:

    t-cell collection

    Yes 6 hours. Once they start the machine if the stop it they are done. So I have a light breakfast with half glass of juice. It is an hour drive to the hospital so I go to the bathroom as soon as I get there. The collecting process uses saline but not a lot. I did get thirsty and only took sips of water when my mouth got dry. I did not eat anything until 4 hours into the process and then just a little snack. After we were done it was almost a 2 hour wait for the results so I would eat a sandwich and some fruit. 

    As to pain killers i have a high pain threshhold so I took one pain killer and that was it. I then switched over to tylenol becuase the RX was too strong for me. For every procedure where I get pain killers I get an instruction sheet and on there it says that if the pain is still bad contact them (the surgeon's office) so they can give something stronger. the T-cell catheter surgery was like when I had a catheter put in for the pluerisy. It is still tender 3 days later. I would tell the Dr. what pain killers have you had in the past and the lack of effect. Make sure they know that you seem to have a high tolerance for the pain killers.

    So Tues & Wed the colletion was about the same and the total collected was .63 million. Today we were a few minutes late because of traffic. I don't think I was hooked up even 30 mins when the nurse got a call to stop. I takes about 15-20 mins to completely stop. Shortly after a nurse from the SCT team can in to say that the white cell count was about the same as the last 2 days so they probably wouldn't get many more t-cells today than the last 2 days. The process was kicking the crap out of my platelets (84 on Tues and 37 today). They felt that continuing to try and pull more t-cells would only cause more harm to me. The next plan would be a donor transplant. I will be meeting with the SCT Dr on Monday, waiting to hear when the appt will be. When I read through the blood test results from the last few days I had to look up what some of the tests were showing. There were a few that were kind of scary but my results were good. Then there were the scary ones where the results did not appear good. However I have no idea if lined with some other result it isn't so bad. So I wait for the Dr to let me know what is going on. 

    I am beginning to wonder if I should continue or just take the fact the the PET scan shows no cancer and just do the 2 years of Rituxan. A friend of mine died a year ago after 12 years of fighting cancer. I kind of feel that having the SCT postponed for the second time may mean i should not go through it. Since I thought I was going into the hospital tomorrow I took the day off from work. I am taking it off anyway just to have time to think. 

    Linda

    Big Decision

    Linda, How disappointed you must feel.  I can understand why you have taken the day off to think. You have a lot to think about.

    If I were in your shoes, I'm pretty sure I would be thinking along the same lines you are. Your SCT has been postponed twice, yet you remain in remission with Rituxan infusions. As you know, allogeneic transplants carry a much higher risk. You will likely remain on maintenance Rituxan while a suitable donor is sought. I supppose that gives you more time to make a decision about which route you want to take.

    I did 2 years of Rituxan maintenance and while it was no walk in the park, it was much easier than R-CHOP and I even have hair. I finished my maintenance a year ago and remain in remission. I would go back on Rituxan in a heart beat. In fact, I would take it for the rest of my life if needed. 

    I hope you have a glorious, worry-free weekend.

    Hugs,

    Rocquie

     

  • Sal0101
    Sal0101 Member Posts: 136 Member
    lindary said:

    t-cell collection

    Yes 6 hours. Once they start the machine if the stop it they are done. So I have a light breakfast with half glass of juice. It is an hour drive to the hospital so I go to the bathroom as soon as I get there. The collecting process uses saline but not a lot. I did get thirsty and only took sips of water when my mouth got dry. I did not eat anything until 4 hours into the process and then just a little snack. After we were done it was almost a 2 hour wait for the results so I would eat a sandwich and some fruit. 

    As to pain killers i have a high pain threshhold so I took one pain killer and that was it. I then switched over to tylenol becuase the RX was too strong for me. For every procedure where I get pain killers I get an instruction sheet and on there it says that if the pain is still bad contact them (the surgeon's office) so they can give something stronger. the T-cell catheter surgery was like when I had a catheter put in for the pluerisy. It is still tender 3 days later. I would tell the Dr. what pain killers have you had in the past and the lack of effect. Make sure they know that you seem to have a high tolerance for the pain killers.

    So Tues & Wed the colletion was about the same and the total collected was .63 million. Today we were a few minutes late because of traffic. I don't think I was hooked up even 30 mins when the nurse got a call to stop. I takes about 15-20 mins to completely stop. Shortly after a nurse from the SCT team can in to say that the white cell count was about the same as the last 2 days so they probably wouldn't get many more t-cells today than the last 2 days. The process was kicking the crap out of my platelets (84 on Tues and 37 today). They felt that continuing to try and pull more t-cells would only cause more harm to me. The next plan would be a donor transplant. I will be meeting with the SCT Dr on Monday, waiting to hear when the appt will be. When I read through the blood test results from the last few days I had to look up what some of the tests were showing. There were a few that were kind of scary but my results were good. Then there were the scary ones where the results did not appear good. However I have no idea if lined with some other result it isn't so bad. So I wait for the Dr to let me know what is going on. 

    I am beginning to wonder if I should continue or just take the fact the the PET scan shows no cancer and just do the 2 years of Rituxan. A friend of mine died a year ago after 12 years of fighting cancer. I kind of feel that having the SCT postponed for the second time may mean i should not go through it. Since I thought I was going into the hospital tomorrow I took the day off from work. I am taking it off anyway just to have time to think. 

    Linda

    SCT

    Linda,  you have to be so disappointed.  I want to say there is a reason for everything, but I'm not quite sure I believe that, mostly because I can't figure out the reason we were chosen for this fight to begin with.  I obviosly have no answers for you and wouldn't even try. Only you can decide whether to continue with a donor or choose the rituxan.  I can however say that from the little I know of you, you are very strong.  You will make the right decision! Hope you had a nice day off of work!  Enjoy your weekend! 

    Sharon

  • DadysGirl
    DadysGirl Member Posts: 346
     I hope your mind and soul

     I hope your mind and soul will be directed to the right path...

    My very best wishes....

  • OO7
    OO7 Member Posts: 281
    lindary said:

    t-cell collection

    Yes 6 hours. Once they start the machine if the stop it they are done. So I have a light breakfast with half glass of juice. It is an hour drive to the hospital so I go to the bathroom as soon as I get there. The collecting process uses saline but not a lot. I did get thirsty and only took sips of water when my mouth got dry. I did not eat anything until 4 hours into the process and then just a little snack. After we were done it was almost a 2 hour wait for the results so I would eat a sandwich and some fruit. 

    As to pain killers i have a high pain threshhold so I took one pain killer and that was it. I then switched over to tylenol becuase the RX was too strong for me. For every procedure where I get pain killers I get an instruction sheet and on there it says that if the pain is still bad contact them (the surgeon's office) so they can give something stronger. the T-cell catheter surgery was like when I had a catheter put in for the pluerisy. It is still tender 3 days later. I would tell the Dr. what pain killers have you had in the past and the lack of effect. Make sure they know that you seem to have a high tolerance for the pain killers.

    So Tues & Wed the colletion was about the same and the total collected was .63 million. Today we were a few minutes late because of traffic. I don't think I was hooked up even 30 mins when the nurse got a call to stop. I takes about 15-20 mins to completely stop. Shortly after a nurse from the SCT team can in to say that the white cell count was about the same as the last 2 days so they probably wouldn't get many more t-cells today than the last 2 days. The process was kicking the crap out of my platelets (84 on Tues and 37 today). They felt that continuing to try and pull more t-cells would only cause more harm to me. The next plan would be a donor transplant. I will be meeting with the SCT Dr on Monday, waiting to hear when the appt will be. When I read through the blood test results from the last few days I had to look up what some of the tests were showing. There were a few that were kind of scary but my results were good. Then there were the scary ones where the results did not appear good. However I have no idea if lined with some other result it isn't so bad. So I wait for the Dr to let me know what is going on. 

    I am beginning to wonder if I should continue or just take the fact the the PET scan shows no cancer and just do the 2 years of Rituxan. A friend of mine died a year ago after 12 years of fighting cancer. I kind of feel that having the SCT postponed for the second time may mean i should not go through it. Since I thought I was going into the hospital tomorrow I took the day off from work. I am taking it off anyway just to have time to think. 

    Linda

    What to do?

    Sometimes it's such decisions that make this journey so difficult.  

    What about seeking a second opinion from a leading specialist in lymphoma?  Dana Farber, MD Anderson etc...?

    Perhaps a set of fresh eyes could give you clarity, I don't know.  Just a though.  I too have great success with Rituxan and understand completely where Rocquie is coming from.  My second opinion came from one of my doctors who strongly insisted on the treatment path I took. I traveled to Boston.

    I'm guessing you know what your going to do, I hope time has given you clarity and confidence in your decision.

     

  • lindary
    lindary Member Posts: 711 Member
    DadysGirl said:

     I hope your mind and soul

     I hope your mind and soul will be directed to the right path...

    My very best wishes....

    SCT - next step

    I am very glad I took the weekend "off". 

    All of the Stem Cell related stuff is being done at Rush Hospital in Chgo. There are 11 hospitals, all in Chgo or nearby suburbs, that do Celluar therapy. Of them 7 are certified to do auto & allo transplants. With every stage of this process I have had a nurse, Dr or other medical professional sit down and described everything that will be going on. Being an information junkie, I've also done my own research so I feel I have a good stock of quesstions when I get in there. I've seldom had questions to ask since they are very thorough in the information. So I did spend a lot of time over the weekend searching on the non-standard stem cell procedures. Things like what happens when not enough stem cells are collected in 2 - 3 days, etc. I was curious to hear what the Dr had to tell me. 

    To summarize what she said:

    - The mobolization (Neupogen/Mozobil) shots raised the white cell counts high but not as high as they would have wanted. The Dr told me they have had patients before where this happened and they just took longer to harvest the cells.

    - The total stem cells from 2.5 days was .7 million cells. She said that we could try to repeat the harvesting until we got a total of 2 million or more.

    - The Dr is concerned that my platelets went from 90 before the surgery on Monday to 37 on Thurs morning. Today they were at 61. The process can hit the platelets hard but usually recovery is quicker than what I was doing.

    - She has also wondered why, when I had a Rituxan treatment in Jan, my white cell count went from 2.6 to 1.01 in 2 weeks. It had been 3.83 just 6 days before the Rituxan. Rituxan show have no or little effect on white cell counts. 

    - Then there is the bone marrow biopsies. The one done in Nov showed some abnormal genetic material. They weren't sure why. Another biopsy was done in Feb which had not abnormalities. She assured me she, and some others, had looked at it several times. They could not determine why it was there and then not there. 

    Her final decision is that my bone marrow has become dysfunctional. So we are defeintely going to be going with a donor. My brother had already submit a sample and I was told he was not a good match. At the time they said it was like 7 out of 10 HLA markers. They are going to go back and check if at least 6 of those markers are the 6 most important ones. They have also started checking the Bone Marrow bank to see what kind of match they can find there. (There is a heirarchy of the 12 or so HLA markers, as to importance. I get the impression that there has to be a match on at least the first 6.)

    For now I am going back into the office until something is found. Next week I do have an appt with my local oncologist next Tues for blood test, change the dressing from the catheter surgery and possible Rituxan, if the cell counts are good. The blood test & dressing changes may happen every week for a few weeks. 

    Until then my husband has to flush the catheter every day. I do feel confident with what the Dr has told me, especially when she brought up evry single one of the unusual results and her concerns about them. I am definitely feeling better again with the direction this is going. 

  • DadysGirl
    DadysGirl Member Posts: 346
    I'm glad you are feeling

    I'm glad you are feeling better and stronger emotionally. Wishing whatever path is taken will be the path with the best outcome. It had taken my wonderful Dad 4 days for enough collection. 

  • po18guy
    po18guy Member Posts: 1,461 Member
    lindary said:

    SCT - next step

    I am very glad I took the weekend "off". 

    All of the Stem Cell related stuff is being done at Rush Hospital in Chgo. There are 11 hospitals, all in Chgo or nearby suburbs, that do Celluar therapy. Of them 7 are certified to do auto & allo transplants. With every stage of this process I have had a nurse, Dr or other medical professional sit down and described everything that will be going on. Being an information junkie, I've also done my own research so I feel I have a good stock of quesstions when I get in there. I've seldom had questions to ask since they are very thorough in the information. So I did spend a lot of time over the weekend searching on the non-standard stem cell procedures. Things like what happens when not enough stem cells are collected in 2 - 3 days, etc. I was curious to hear what the Dr had to tell me. 

    To summarize what she said:

    - The mobolization (Neupogen/Mozobil) shots raised the white cell counts high but not as high as they would have wanted. The Dr told me they have had patients before where this happened and they just took longer to harvest the cells.

    - The total stem cells from 2.5 days was .7 million cells. She said that we could try to repeat the harvesting until we got a total of 2 million or more.

    - The Dr is concerned that my platelets went from 90 before the surgery on Monday to 37 on Thurs morning. Today they were at 61. The process can hit the platelets hard but usually recovery is quicker than what I was doing.

    - She has also wondered why, when I had a Rituxan treatment in Jan, my white cell count went from 2.6 to 1.01 in 2 weeks. It had been 3.83 just 6 days before the Rituxan. Rituxan show have no or little effect on white cell counts. 

    - Then there is the bone marrow biopsies. The one done in Nov showed some abnormal genetic material. They weren't sure why. Another biopsy was done in Feb which had not abnormalities. She assured me she, and some others, had looked at it several times. They could not determine why it was there and then not there. 

    Her final decision is that my bone marrow has become dysfunctional. So we are defeintely going to be going with a donor. My brother had already submit a sample and I was told he was not a good match. At the time they said it was like 7 out of 10 HLA markers. They are going to go back and check if at least 6 of those markers are the 6 most important ones. They have also started checking the Bone Marrow bank to see what kind of match they can find there. (There is a heirarchy of the 12 or so HLA markers, as to importance. I get the impression that there has to be a match on at least the first 6.)

    For now I am going back into the office until something is found. Next week I do have an appt with my local oncologist next Tues for blood test, change the dressing from the catheter surgery and possible Rituxan, if the cell counts are good. The blood test & dressing changes may happen every week for a few weeks. 

    Until then my husband has to flush the catheter every day. I do feel confident with what the Dr has told me, especially when she brought up evry single one of the unusual results and her concerns about them. I am definitely feeling better again with the direction this is going. 

    What a journey! Regarding the

    What a journey! Regarding the stem cell collection, your marrow is most likely damaged after chemotherapy. More treatment, more damage. It "sounds" like the marrow samples are exhibing Myelo Dysplastic Syndrome (MDS), which again can be related to treatment. My marrow showed evidence of it just prior to my transplant. Not to alarm, but if it is MDS, and if it progresses, it can lead to marrow failure. I do not know the current thinking regarding transplants and follicular lymphoma, but in many cases, an allogeneic transplant is the weapon of choice. It is not a delicate or elegant solution - it is a sledge hammer. However, some of us had to hammer the disease. 

    But. An allogeneic transplant is a bridge which you burn as you cross it. There is no turning back and looking back is useless. The decision must be made after careful and informed consideration is given to the risks vs. benefits. If your marrow is persistently weak,there is not much choice, as the only way to "renew" the marrow is via transplant. Are they conductiong a donor search?   

  • paella
    paella Member Posts: 81
    lindary said:

    SCT - next step

    I am very glad I took the weekend "off". 

    All of the Stem Cell related stuff is being done at Rush Hospital in Chgo. There are 11 hospitals, all in Chgo or nearby suburbs, that do Celluar therapy. Of them 7 are certified to do auto & allo transplants. With every stage of this process I have had a nurse, Dr or other medical professional sit down and described everything that will be going on. Being an information junkie, I've also done my own research so I feel I have a good stock of quesstions when I get in there. I've seldom had questions to ask since they are very thorough in the information. So I did spend a lot of time over the weekend searching on the non-standard stem cell procedures. Things like what happens when not enough stem cells are collected in 2 - 3 days, etc. I was curious to hear what the Dr had to tell me. 

    To summarize what she said:

    - The mobolization (Neupogen/Mozobil) shots raised the white cell counts high but not as high as they would have wanted. The Dr told me they have had patients before where this happened and they just took longer to harvest the cells.

    - The total stem cells from 2.5 days was .7 million cells. She said that we could try to repeat the harvesting until we got a total of 2 million or more.

    - The Dr is concerned that my platelets went from 90 before the surgery on Monday to 37 on Thurs morning. Today they were at 61. The process can hit the platelets hard but usually recovery is quicker than what I was doing.

    - She has also wondered why, when I had a Rituxan treatment in Jan, my white cell count went from 2.6 to 1.01 in 2 weeks. It had been 3.83 just 6 days before the Rituxan. Rituxan show have no or little effect on white cell counts. 

    - Then there is the bone marrow biopsies. The one done in Nov showed some abnormal genetic material. They weren't sure why. Another biopsy was done in Feb which had not abnormalities. She assured me she, and some others, had looked at it several times. They could not determine why it was there and then not there. 

    Her final decision is that my bone marrow has become dysfunctional. So we are defeintely going to be going with a donor. My brother had already submit a sample and I was told he was not a good match. At the time they said it was like 7 out of 10 HLA markers. They are going to go back and check if at least 6 of those markers are the 6 most important ones. They have also started checking the Bone Marrow bank to see what kind of match they can find there. (There is a heirarchy of the 12 or so HLA markers, as to importance. I get the impression that there has to be a match on at least the first 6.)

    For now I am going back into the office until something is found. Next week I do have an appt with my local oncologist next Tues for blood test, change the dressing from the catheter surgery and possible Rituxan, if the cell counts are good. The blood test & dressing changes may happen every week for a few weeks. 

    Until then my husband has to flush the catheter every day. I do feel confident with what the Dr has told me, especially when she brought up evry single one of the unusual results and her concerns about them. I am definitely feeling better again with the direction this is going. 

    Rocky Territory

    Dear Lindary –  

    Been thinking a great deal about all the latest news (starting with your 3/17 post)…but haven’t had easy access to a computer (only a Kindle and I hate typing on that).  Plus, I’ve been trying to get my thoughts in order about your situation as it has changed so much in just a week.  Actually, your trip through this rocky territory has taken a bunch of different directions ever since early last year.   

    I admire your matter-of-fact attitude and positive energy!! 

    Your last note (about the Allogenic transplant) was very informative.  Am glad you’re in a good place about the decision and are confident with what your doc has told you.  The fact that she brought up each of those unusual results would definitely make one feel better about this new direction. 

    Will be thinking of you and sending “matching donor thoughts” your way! 

    Paella

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    po18guy said:

    What a journey! Regarding the

    What a journey! Regarding the stem cell collection, your marrow is most likely damaged after chemotherapy. More treatment, more damage. It "sounds" like the marrow samples are exhibing Myelo Dysplastic Syndrome (MDS), which again can be related to treatment. My marrow showed evidence of it just prior to my transplant. Not to alarm, but if it is MDS, and if it progresses, it can lead to marrow failure. I do not know the current thinking regarding transplants and follicular lymphoma, but in many cases, an allogeneic transplant is the weapon of choice. It is not a delicate or elegant solution - it is a sledge hammer. However, some of us had to hammer the disease. 

    But. An allogeneic transplant is a bridge which you burn as you cross it. There is no turning back and looking back is useless. The decision must be made after careful and informed consideration is given to the risks vs. benefits. If your marrow is persistently weak,there is not much choice, as the only way to "renew" the marrow is via transplant. Are they conductiong a donor search?   

    Good Hearing from you

    I am glad you have written, PoGuy.

    Numerous folks here had been concerned about your silence for some time. Your style is caring but rich in factual material, given "straight up."  Often, that is what is most needed.  

    When I was teaching history, the students often requested that I somehow make the material "fun."  It was a somewhat ridiculous request, but there is nothng students won't ask for.  I asked them if their calculus courses were "fun," or their organic chemistry -- was it "fun"?  So too with cancer, and even moreso SCT:  It cannot be discussed in a way that is enjoyable or pleasant.  It can contain hope and encouragement, but none of this is ever pleasant, to anyone.

    Linda has mentioned the possibility of going into long-term Rituxan maintenance (post of 3/17/16).  How feasible is that, rather than SCT, if bone marrow failure is occuring (I have no idea  myself) ?   But several writers over the years have grappled with the dilemma of whether to go SCT or long-term maintance against various strains, when maintanence had good prognosis.  SCT is a world unto itself, and it is a huge advantage that you are here to share so much.

    Linda, as much as you would prefer that it not be the case, you are becoming one of those 'hero' sorts of figures, who inspire the readership. 

    I pray this all works out for you, and that all of the right choices are made,

    max

    .

  • po18guy
    po18guy Member Posts: 1,461 Member
    lindary said:

    SCT - next step

    I am very glad I took the weekend "off". 

    All of the Stem Cell related stuff is being done at Rush Hospital in Chgo. There are 11 hospitals, all in Chgo or nearby suburbs, that do Celluar therapy. Of them 7 are certified to do auto & allo transplants. With every stage of this process I have had a nurse, Dr or other medical professional sit down and described everything that will be going on. Being an information junkie, I've also done my own research so I feel I have a good stock of quesstions when I get in there. I've seldom had questions to ask since they are very thorough in the information. So I did spend a lot of time over the weekend searching on the non-standard stem cell procedures. Things like what happens when not enough stem cells are collected in 2 - 3 days, etc. I was curious to hear what the Dr had to tell me. 

    To summarize what she said:

    - The mobolization (Neupogen/Mozobil) shots raised the white cell counts high but not as high as they would have wanted. The Dr told me they have had patients before where this happened and they just took longer to harvest the cells.

    - The total stem cells from 2.5 days was .7 million cells. She said that we could try to repeat the harvesting until we got a total of 2 million or more.

    - The Dr is concerned that my platelets went from 90 before the surgery on Monday to 37 on Thurs morning. Today they were at 61. The process can hit the platelets hard but usually recovery is quicker than what I was doing.

    - She has also wondered why, when I had a Rituxan treatment in Jan, my white cell count went from 2.6 to 1.01 in 2 weeks. It had been 3.83 just 6 days before the Rituxan. Rituxan show have no or little effect on white cell counts. 

    - Then there is the bone marrow biopsies. The one done in Nov showed some abnormal genetic material. They weren't sure why. Another biopsy was done in Feb which had not abnormalities. She assured me she, and some others, had looked at it several times. They could not determine why it was there and then not there. 

    Her final decision is that my bone marrow has become dysfunctional. So we are defeintely going to be going with a donor. My brother had already submit a sample and I was told he was not a good match. At the time they said it was like 7 out of 10 HLA markers. They are going to go back and check if at least 6 of those markers are the 6 most important ones. They have also started checking the Bone Marrow bank to see what kind of match they can find there. (There is a heirarchy of the 12 or so HLA markers, as to importance. I get the impression that there has to be a match on at least the first 6.)

    For now I am going back into the office until something is found. Next week I do have an appt with my local oncologist next Tues for blood test, change the dressing from the catheter surgery and possible Rituxan, if the cell counts are good. The blood test & dressing changes may happen every week for a few weeks. 

    Until then my husband has to flush the catheter every day. I do feel confident with what the Dr has told me, especially when she brought up evry single one of the unusual results and her concerns about them. I am definitely feeling better again with the direction this is going. 

    There are no certain answers

    You may already know this. If so, please excuse me and consider it to be for those who are reading. After treatment with the number and variety of drugs that you have received, marrow suppression and/or damage is to be expected. This may manifest itself in what is known as pancytopenia (low reds, whites and platelets), in deficiency of any one or more of them, or in the presence of non-cancerous but damaged normal cells. Chemotherapy interferes with DNA synthesis, which all living cells, cancerous or not, go through in basic cell division. Thus while treatment causes the death of cancer cells, it often also kills (or damages the DNA) of non-cancerous cells. Those damaged cells continue to live and divide in your body, potentially becoming cancerous themselves at some point. That is the huge trade-off of cancer therapy. Particularly susceptible to damage are the immature stem cells in the marrow. This damage is often reflected in marrow samples, but detection depends upon both the quality and quantity of the marrow sample.

    Marrow sampling is similar to a needle biopsy in that the sample might represent a portion of the marrow which may have recovered. It is only a sample and does not guarantee that cancer is not present, or that DNA damage is not present. The pathologist can report only on the condition of te cells in the small sample itself. Thus, some false negative findings may result, as your entire marrow was not examined. Marrow sampling is necessary, and is strongly indicative, but is conclusive only if cancer or damaged normal cells are positively identified. Thus, it can reveal cancer cells in the marrow, but cannot reveal cells which are missed in the aspiration process. It is very unlikely to produce a false positive indication, but false negative readings certainly may occur. 

    Marrow damage is perhaps more evident than the presence of cancer cells in the marrow, inasmuch as cancer cells may be minimal, while damaged normal cells might be more plentiful and more easily detected. The question is whether the marrow is recovering, and if so, whether that recovery is rapid enough to produce sufficient normal cells for an autologous transplant. Autologous transplants cannot be made with absolute assurance that no cancer cells are also being transplanted. As to what they accomplish, autologous transplants basically reboot your inherited immune system - but it is necessary to remember here that your immune system (even before chemo) was unable to control the tumors in the first place. 

    Thus, allogeneic transplants, although substantially more risky, introduce donor stem cells which are healthy, having never been exposed to DNA damaging chemotherapy. "Allo" transpants are intended to completely replace your marrow with the donor's healthy marrow. Your blood type will become that of your donor, as their marrow (stem cells) produces their blood within your body. Less well known is that you will quite possibly develop their allergies. You will become a chimera, have two entirely separate DNAs in your body, and that is the genesis of potential complications.

    Transplanting is not something done in blind faith, but is certainly an informed leap of faith.  

  • po18guy
    po18guy Member Posts: 1,461 Member

    Good Hearing from you

    I am glad you have written, PoGuy.

    Numerous folks here had been concerned about your silence for some time. Your style is caring but rich in factual material, given "straight up."  Often, that is what is most needed.  

    When I was teaching history, the students often requested that I somehow make the material "fun."  It was a somewhat ridiculous request, but there is nothng students won't ask for.  I asked them if their calculus courses were "fun," or their organic chemistry -- was it "fun"?  So too with cancer, and even moreso SCT:  It cannot be discussed in a way that is enjoyable or pleasant.  It can contain hope and encouragement, but none of this is ever pleasant, to anyone.

    Linda has mentioned the possibility of going into long-term Rituxan maintenance (post of 3/17/16).  How feasible is that, rather than SCT, if bone marrow failure is occuring (I have no idea  myself) ?   But several writers over the years have grappled with the dilemma of whether to go SCT or long-term maintance against various strains, when maintanence had good prognosis.  SCT is a world unto itself, and it is a huge advantage that you are here to share so much.

    Linda, as much as you would prefer that it not be the case, you are becoming one of those 'hero' sorts of figures, who inspire the readership. 

    I pray this all works out for you, and that all of the right choices are made,

    max

    .

    Too kind

    Thank you for your kind words. I've been busy both with GvHD management as well as being a mod on another forum. I never in my life intended to have any knowledge, however limited, of this subject matter. But, like Lindary, I love to know what is happening and why.  

  • lindary
    lindary Member Posts: 711 Member
    po18guy said:

    There are no certain answers

    You may already know this. If so, please excuse me and consider it to be for those who are reading. After treatment with the number and variety of drugs that you have received, marrow suppression and/or damage is to be expected. This may manifest itself in what is known as pancytopenia (low reds, whites and platelets), in deficiency of any one or more of them, or in the presence of non-cancerous but damaged normal cells. Chemotherapy interferes with DNA synthesis, which all living cells, cancerous or not, go through in basic cell division. Thus while treatment causes the death of cancer cells, it often also kills (or damages the DNA) of non-cancerous cells. Those damaged cells continue to live and divide in your body, potentially becoming cancerous themselves at some point. That is the huge trade-off of cancer therapy. Particularly susceptible to damage are the immature stem cells in the marrow. This damage is often reflected in marrow samples, but detection depends upon both the quality and quantity of the marrow sample.

    Marrow sampling is similar to a needle biopsy in that the sample might represent a portion of the marrow which may have recovered. It is only a sample and does not guarantee that cancer is not present, or that DNA damage is not present. The pathologist can report only on the condition of te cells in the small sample itself. Thus, some false negative findings may result, as your entire marrow was not examined. Marrow sampling is necessary, and is strongly indicative, but is conclusive only if cancer or damaged normal cells are positively identified. Thus, it can reveal cancer cells in the marrow, but cannot reveal cells which are missed in the aspiration process. It is very unlikely to produce a false positive indication, but false negative readings certainly may occur. 

    Marrow damage is perhaps more evident than the presence of cancer cells in the marrow, inasmuch as cancer cells may be minimal, while damaged normal cells might be more plentiful and more easily detected. The question is whether the marrow is recovering, and if so, whether that recovery is rapid enough to produce sufficient normal cells for an autologous transplant. Autologous transplants cannot be made with absolute assurance that no cancer cells are also being transplanted. As to what they accomplish, autologous transplants basically reboot your inherited immune system - but it is necessary to remember here that your immune system (even before chemo) was unable to control the tumors in the first place. 

    Thus, allogeneic transplants, although substantially more risky, introduce donor stem cells which are healthy, having never been exposed to DNA damaging chemotherapy. "Allo" transpants are intended to completely replace your marrow with the donor's healthy marrow. Your blood type will become that of your donor, as their marrow (stem cells) produces their blood within your body. Less well known is that you will quite possibly develop their allergies. You will become a chimera, have two entirely separate DNAs in your body, and that is the genesis of potential complications.

    Transplanting is not something done in blind faith, but is certainly an informed leap of faith.  

    Thanks

    Thanks to everyone for all of the feedback. 

    We tried twice for the Auto transplant. First time bounced because of that abnormal genetic materail (Dr thought it might be MDS). Then this second time we got as far as stem cell collection which resulted in very low platelets. My Dr is definitely concerned that if we continue for the Auto transplant my damaged marrow may take so long to recover, well I could run into other complications that way.

    I will admit that the idea of an Allo transplants does scare me to a point. I had read before about possibly ending up with a different blood type but I had not heard about the change in allergies. I know the Dr is hoping my brother can be a donor which reduce some of the side effects but if he can't be a donor I have to trust they are going to try and find the closest match they can.  I do like your comment about becoming a chimera. When I looked up that term along with SCT there are a number of sites that talk about the conditions. 

    Right now I am focusing on just keping on keeping. 

  • po18guy
    po18guy Member Posts: 1,461 Member
    lindary said:

    Thanks

    Thanks to everyone for all of the feedback. 

    We tried twice for the Auto transplant. First time bounced because of that abnormal genetic materail (Dr thought it might be MDS). Then this second time we got as far as stem cell collection which resulted in very low platelets. My Dr is definitely concerned that if we continue for the Auto transplant my damaged marrow may take so long to recover, well I could run into other complications that way.

    I will admit that the idea of an Allo transplants does scare me to a point. I had read before about possibly ending up with a different blood type but I had not heard about the change in allergies. I know the Dr is hoping my brother can be a donor which reduce some of the side effects but if he can't be a donor I have to trust they are going to try and find the closest match they can.  I do like your comment about becoming a chimera. When I looked up that term along with SCT there are a number of sites that talk about the conditions. 

    Right now I am focusing on just keping on keeping. 

    Transformed might need a transplant

    Doctors tend to think MDS if marrow abnormalitieis are found - yet they may be only temporary damage from the treatment, and are not always irreversible or degenerating. Since your blood oiginates in the marrow, a change of marrow (either bone marrow transplant or peripheral blood stem-cell transplant) will replace your blood/marrow/immune system with that of your donor. Unless they happen to have your exact blood type, it will change. DNA analysis of your new blood will show that it is identical to the donor's, as it IS the donor's. So, be careful around crime scenes!

    With a composite/mutated/transformed lymphoma, an allo transplant may be your best bet. DLBCL, once transformed from Follicular, can be a challenge to successfully treat, so a clinical trial or transplant might be exactly what you need. We can only throw so many drugs at the lymphoma and our options are reduced each time.

    I would tihnk Trial or Transplant at this point, but that is a very personal decision.  

  • lindary
    lindary Member Posts: 711 Member
    po18guy said:

    Transformed might need a transplant

    Doctors tend to think MDS if marrow abnormalitieis are found - yet they may be only temporary damage from the treatment, and are not always irreversible or degenerating. Since your blood oiginates in the marrow, a change of marrow (either bone marrow transplant or peripheral blood stem-cell transplant) will replace your blood/marrow/immune system with that of your donor. Unless they happen to have your exact blood type, it will change. DNA analysis of your new blood will show that it is identical to the donor's, as it IS the donor's. So, be careful around crime scenes!

    With a composite/mutated/transformed lymphoma, an allo transplant may be your best bet. DLBCL, once transformed from Follicular, can be a challenge to successfully treat, so a clinical trial or transplant might be exactly what you need. We can only throw so many drugs at the lymphoma and our options are reduced each time.

    I would tihnk Trial or Transplant at this point, but that is a very personal decision.  

    Allo transplant

    Discussions about a SCT has been going on since mid-Nov. I've had lots of time to think on this, read up on SCT and talk to people like you. I appreciate info from those who have been through SCT and those, who like me, do a lot of their reaserch on cancer related subjects. Add to that my job in IT has been to look at data and analyze for problem sources and determine the best way to handle them. Talking with my SCT Dr. I can see how she uses many of those same skills in reviewing my tests results, problems I have had and weigh the risk with each option to move forward. With the threat of a transformation from follicular to something like DLBCL, the SCT seems like my best option.