My Stem Cell Transplant journey

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. 

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 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

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

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

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.

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. 

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. 

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

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. 

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.