My Stem Cell Transplant journey
Comments
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No much going onDadysGirl said: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.
This last Tues I went to my local oncologist for the blood test and dressing change on the catheter. The platelets were up to 116, almost twice what it was the previous Tues. So I had a Rituxan treatment. Next Tues I see the Dr at Rush. Another blood test and dressing change. I figure I should hear if they have found a stem cell match yet, or not. Not much else going on.
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thanks...lindary said:No much going on
This last Tues I went to my local oncologist for the blood test and dressing change on the catheter. The platelets were up to 116, almost twice what it was the previous Tues. So I had a Rituxan treatment. Next Tues I see the Dr at Rush. Another blood test and dressing change. I figure I should hear if they have found a stem cell match yet, or not. Not much else going on.
Thanks for keeping us in the loop. Hope you hear good news soon about the match.
Paella
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Brief updatelindary said:No much going on
This last Tues I went to my local oncologist for the blood test and dressing change on the catheter. The platelets were up to 116, almost twice what it was the previous Tues. So I had a Rituxan treatment. Next Tues I see the Dr at Rush. Another blood test and dressing change. I figure I should hear if they have found a stem cell match yet, or not. Not much else going on.
Not sure why but the Dr at Rush had my appt changed from this week Tues to next week Wed in the am.
I did receive a letter from Be The Match about my Dr contacting for a donor. They offer a lot of services for transplant patients & caregivers.
I found the document in my docs at the hospital and entered the bone marrow numbers. If I did it right, there are a little over 900 matches for 7 out of 8 and 1100+ for 6 out of 8. (none were 8 out of 8). I know from some of the sites I've visited that there is another level or 2 of numbers that the Dr needs to look at to determine who would be the best donor. I hope to learn more next Tues.
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Today's Dr Appt.lindary said:Brief update
Not sure why but the Dr at Rush had my appt changed from this week Tues to next week Wed in the am.
I did receive a letter from Be The Match about my Dr contacting for a donor. They offer a lot of services for transplant patients & caregivers.
I found the document in my docs at the hospital and entered the bone marrow numbers. If I did it right, there are a little over 900 matches for 7 out of 8 and 1100+ for 6 out of 8. (none were 8 out of 8). I know from some of the sites I've visited that there is another level or 2 of numbers that the Dr needs to look at to determine who would be the best donor. I hope to learn more next Tues.
The blood test showed my platelets count had dropped. Dr. believes the Rituxan I had about 2 weeks ago caused the drop. When I have a Rituxan treatment last Jan the white cells dropped about 2 weeks later. The Dr. says this is another indication of how my bone marrow is not functioning like it should.
As to the Stem Cell Transplant:
The Dr went over my case with the oncology team at Rush. She said that given the way my lymphoma behaved I do qualify for using my own stem cells for the transplant. However there have been several red flags to say that my bone marrow has become dysfunctional. The transplant would be sure to get rid of any lymphoma cells but it will not improve the performance of my bone marrow.
The only way to adress both conditions is a unrelated donor stem cell tranplant. The team doesn't support that since they don't know what is causing my bone marrow issues. Plus the risk of the GVH disease is a big concern. My brother is not a good match and they have decided to test my son. We'll see how that goes.
So the plan now is that I will have CT/PET scans done in about 2 weeks (once the platelets are back up) and another bone biopsy. The week after that I will meet again with the Dr to get the bone marrow results. My guess is that they are hoping to be able to find out what is causing the poor performance of the bone marrow. If they can, then they will be able to put a plan together. If they can't and the scans show the cancer is still in remission I will go into the "watch & wait" status. We have also decided to keep the catheter in until the test results are back. If the SCT is not going to be scheudled then it will be removed.
Right now I am feeling that I can make plans for the next few months.
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In my heartlindary said:Today's Dr Appt.
The blood test showed my platelets count had dropped. Dr. believes the Rituxan I had about 2 weeks ago caused the drop. When I have a Rituxan treatment last Jan the white cells dropped about 2 weeks later. The Dr. says this is another indication of how my bone marrow is not functioning like it should.
As to the Stem Cell Transplant:
The Dr went over my case with the oncology team at Rush. She said that given the way my lymphoma behaved I do qualify for using my own stem cells for the transplant. However there have been several red flags to say that my bone marrow has become dysfunctional. The transplant would be sure to get rid of any lymphoma cells but it will not improve the performance of my bone marrow.
The only way to adress both conditions is a unrelated donor stem cell tranplant. The team doesn't support that since they don't know what is causing my bone marrow issues. Plus the risk of the GVH disease is a big concern. My brother is not a good match and they have decided to test my son. We'll see how that goes.
So the plan now is that I will have CT/PET scans done in about 2 weeks (once the platelets are back up) and another bone biopsy. The week after that I will meet again with the Dr to get the bone marrow results. My guess is that they are hoping to be able to find out what is causing the poor performance of the bone marrow. If they can, then they will be able to put a plan together. If they can't and the scans show the cancer is still in remission I will go into the "watch & wait" status. We have also decided to keep the catheter in until the test results are back. If the SCT is not going to be scheudled then it will be removed.
Right now I am feeling that I can make plans for the next few months.
you have been through so much dear girl... This really is a fight isn't it? You have my total support..will be watching for more news...
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doing oklindary said:Today's Dr Appt.
The blood test showed my platelets count had dropped. Dr. believes the Rituxan I had about 2 weeks ago caused the drop. When I have a Rituxan treatment last Jan the white cells dropped about 2 weeks later. The Dr. says this is another indication of how my bone marrow is not functioning like it should.
As to the Stem Cell Transplant:
The Dr went over my case with the oncology team at Rush. She said that given the way my lymphoma behaved I do qualify for using my own stem cells for the transplant. However there have been several red flags to say that my bone marrow has become dysfunctional. The transplant would be sure to get rid of any lymphoma cells but it will not improve the performance of my bone marrow.
The only way to adress both conditions is a unrelated donor stem cell tranplant. The team doesn't support that since they don't know what is causing my bone marrow issues. Plus the risk of the GVH disease is a big concern. My brother is not a good match and they have decided to test my son. We'll see how that goes.
So the plan now is that I will have CT/PET scans done in about 2 weeks (once the platelets are back up) and another bone biopsy. The week after that I will meet again with the Dr to get the bone marrow results. My guess is that they are hoping to be able to find out what is causing the poor performance of the bone marrow. If they can, then they will be able to put a plan together. If they can't and the scans show the cancer is still in remission I will go into the "watch & wait" status. We have also decided to keep the catheter in until the test results are back. If the SCT is not going to be scheudled then it will be removed.
Right now I am feeling that I can make plans for the next few months.
My son has not heard anything about giving a swab sample so I am guessing the Dr is still looking into why my bone marrow is low performing and our options. I do see that they are setting up a schedule of tests and appts in early May. I haven't gotten a call or email about them which means they aren't finalized yet.
The good news is that this week's blood test shows all counts have gone up with the platelets going up the most.
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Updatelindary said:Today's Dr Appt.
The blood test showed my platelets count had dropped. Dr. believes the Rituxan I had about 2 weeks ago caused the drop. When I have a Rituxan treatment last Jan the white cells dropped about 2 weeks later. The Dr. says this is another indication of how my bone marrow is not functioning like it should.
As to the Stem Cell Transplant:
The Dr went over my case with the oncology team at Rush. She said that given the way my lymphoma behaved I do qualify for using my own stem cells for the transplant. However there have been several red flags to say that my bone marrow has become dysfunctional. The transplant would be sure to get rid of any lymphoma cells but it will not improve the performance of my bone marrow.
The only way to adress both conditions is a unrelated donor stem cell tranplant. The team doesn't support that since they don't know what is causing my bone marrow issues. Plus the risk of the GVH disease is a big concern. My brother is not a good match and they have decided to test my son. We'll see how that goes.
So the plan now is that I will have CT/PET scans done in about 2 weeks (once the platelets are back up) and another bone biopsy. The week after that I will meet again with the Dr to get the bone marrow results. My guess is that they are hoping to be able to find out what is causing the poor performance of the bone marrow. If they can, then they will be able to put a plan together. If they can't and the scans show the cancer is still in remission I will go into the "watch & wait" status. We have also decided to keep the catheter in until the test results are back. If the SCT is not going to be scheudled then it will be removed.
Right now I am feeling that I can make plans for the next few months.
The latest blood tests show the white, red & hemoglobin has dropped but platelets went up a bit. I will be going in for the EPT/CT scan & bone biopsy May 11. Probably a week later I will find out what the plans are going to be. I hope the blood coutns go up between now and then.
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Rollercoasterlindary said:Update
The latest blood tests show the white, red & hemoglobin has dropped but platelets went up a bit. I will be going in for the EPT/CT scan & bone biopsy May 11. Probably a week later I will find out what the plans are going to be. I hope the blood coutns go up between now and then.
I had no idea how often counts go up and down until I walked down this path. What a darn rollercoaster. I pray your red and white counts rise and stay up along with your platelets.
You're I my prayers, I hope your being good to yourself in between now and your next treatment. Spring offers so much hope to rejuvenate, strengthen and conquer doesn't it?
Blessings
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blood counts
007
If it weren't for you and others talking about their blood counts I probably would have been more worried. Between everyone's stories and the fact I am getting a blood test done every week, I know it's being closely watched. It is so frustrating!
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You might appreciate this...
When I learned I was low in my quantitative immunoglobulin blood test (2 out of 3 one being really low) I hit the Internet. The next thing I knew I was texting my ONC asking him if I had myeloma.
He scolded me like a two-year-old and told me to get off the Internet. I had to laugh and said good luck. My take alway was he was right. He didn't get his PH.D. from the Internet, what I read is so darn basic and cancer is complex. We're all different, values, blood, DNA, cells and reaction. Some of us can be put into a box and others cannot; as you well know.
It's best to learn Everything we can so we can comprehend and speak the same language, up to a certain point...
Lets hope Dr. 007 is wrong and my buzzing feeling in my jaw is NOT follicular cancer crashing my party again....
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Counts Up
When I started my cancer journey my boss warned me that I would probably start to worry about every little twing, hiccup, etc. that happens. She is so right. We are in the world of assume guilty (cancer) until proven innocent (not cancer). Looking up some of the "explanations" for those events often leads to a statement including the word cancer. Like you said, we are best to just gather info and use what we read to help us understand what the Dr. is saying to us.
Good news on my part is that my counts went up. Platelets, which had not gone down last week, are up 9. White cell count didn't just go up but is slightly higher than 2 weeks ago, same wiht the hemoglobin. Red count no change from last week so it is still lower than 2 weeks ago, but it did not drop!
Next week Wed are the tests. I can't wait until those are done and the dr can determine if we do SCT soon or go into watch & wait.
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Wa HOOOOOOOOOOO! Yea! Double Yea!
Amen, now keep it up! Praying hard and big prayers coming your way in hopes this continues.
I had such a bad day yesterday. I had a MRI and regrettably the technician from hell. I'm terribly claustrophobic and freakishly scared of drugs so I didn't take the adivan....... Bad idea. Bad, bad, bad. The tech left me in the tube knowing I didn't medicate to load the pictures and look at them. Bloody hell I had to hit the button. My head was in a cage, screwed shut!! I so hit the button! Get me out of here, hello!!!! I didn't care, two PET scans four maybe five MRI's and three CAT's I the Last 24 months, I was burt and crispy.
Then I learned my best friend might have breast cancer and I broke down horribly. I just wished I could take cancer from my dad (then he could be here today), gram, best friend, all the children in the world and everyone so I would carry the burden. I have big shoulders, not really but mentally enormous.
At the moment when yet another person I love could be a member of this club, I became weak..... Not for what they are looking for on my MRI but her and everyone. Not a good day, much more nonsense but don't want to relive it.
Anyway I came home and read your post and was so happy. Victorious, hopeful and downright positive!
Take the good! Celebrate and savor every morsel.
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update
Sorry I haven't updated for a while but not much was happening with my treatment.
007, sorry to hear about your bad MRI. I have been lucky with the techs when I get scanned.
Today was the big test day. Blood test, Pet/CT scan & bone biopsy. Red, white & hemoglobin is up. Platelets dropped a little, again. The other tests will take a little longer to process. I am guessing I will have an appt with the Dr next week or the week after. The scans went well but I was worried about the bone biopsy since last time there was a rpboelm gettign enough marrow. Good news is that even that went well. she was about to get more than what they required. I know this is the test the Dr is more interested in because she is trying to figure out why my blood levels take so long to get to where they should be and they arent quite stable. she feels there is something lurking in there.
In the meantime I am still working and we are starting to do some of our regular activities. Family cookout for Mother's day and day at the race track with friends this coming Saturday. I am also trying to get to the gym at least on Saturday mornings.
Last week I saw the orthopedic Dr about my left knee. Verdict is I had arthritis in both knees and the left is bone on bone. This week I got a steroid shot in the knee and a knee brace. The brace is to get the knee back in alignment. I am working on being able to get it on right the first time so it doesn't slip down while I am walking. Doing so-so but it reminds me when I first got the compression socks several years ago. Eventually I work it out. I already feel some improvement in when I go up & down the stairs. I don't have to wear it all the time, just when I feel it will help the most.
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Good News
This is going to be my last update on this thread.
I talked to the transplant coordinator from Rush today. She told me that the SCT Dr had completed her review of the tests and lab reports and there is No evidence of Disease. So her conclusion is that I do not need a Stem Cell Transplant at this time.The next step is to have the Hickman catheter removed. Unfortunately the surgeon is out for the next 2 weeks. Hopefully the week after that I can see him to have the catheter removed and then see the SCT Dr the same day. I am sure she has some details she wants to go over with me.Then it will be up to my local oncologist to decide how often I need blood tests and any other tests. I do have a Rituxan treatment next Tues, May 24, and that will continue to occur every 8 weeks for the next 18 months or more. This is to help keep the lyphoma from coming back.I want to thank everyone for their support, suggestions and sharing their own experiences. I have no doubt that is what helped get me to this point without losing my sanity. I just hope that I will stay in remission for many years to come. I am going to stay active on this site since there is still a lot of good information to be had.0 -
AMEN!!!!!!!!!!!!!!!!!!!!!!!!!
I love Good News!
I'm so darn happy. I hoped and prayed for this. What a journey you've been on, what a result, NED!
AMEN!
Happy Dance!!!!! I'm so very thrilled for you and your family. Celebate and enjoy the weekend and reclaim your life with a vengeance.
Blessings
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ThanksOO7 said:AMEN!!!!!!!!!!!!!!!!!!!!!!!!!
I love Good News!
I'm so darn happy. I hoped and prayed for this. What a journey you've been on, what a result, NED!
AMEN!
Happy Dance!!!!! I'm so very thrilled for you and your family. Celebate and enjoy the weekend and reclaim your life with a vengeance.
Blessings
Thank you for your exuberant response. It really makes me smile. I feel like a shadow that was over me has lifted. I know I will still have Rituxan every 8 weeks and scans every so often. But knowing that I don't have to plan for SCT for at least the next year makes me feel good.
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YEE HAH!!!
Super good news!! Warm warm thoughts going out to you there in Chicago, so happy for you!! My autologous SCT looks like it's going to happen but is still somewhat early days since I just had (on Friday, 5/20) a bone biopsy, pulmonary function test, visit with clinical social worker, Electro Cardiogram and EKG. We shall see. I learned a lot about this whole process from your postings, Lindary, and am very appreciative and not as apprehensive thanks to your straight forward explanation of your journey...a good journey to cut short, eh?
hugz from Paella
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Wonderfullindary said:Good News
This is going to be my last update on this thread.
I talked to the transplant coordinator from Rush today. She told me that the SCT Dr had completed her review of the tests and lab reports and there is No evidence of Disease. So her conclusion is that I do not need a Stem Cell Transplant at this time.The next step is to have the Hickman catheter removed. Unfortunately the surgeon is out for the next 2 weeks. Hopefully the week after that I can see him to have the catheter removed and then see the SCT Dr the same day. I am sure she has some details she wants to go over with me.Then it will be up to my local oncologist to decide how often I need blood tests and any other tests. I do have a Rituxan treatment next Tues, May 24, and that will continue to occur every 8 weeks for the next 18 months or more. This is to help keep the lyphoma from coming back.I want to thank everyone for their support, suggestions and sharing their own experiences. I have no doubt that is what helped get me to this point without losing my sanity. I just hope that I will stay in remission for many years to come. I am going to stay active on this site since there is still a lot of good information to be had."As good as it gets" in these parts....
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You toopaella said:YEE HAH!!!
Super good news!! Warm warm thoughts going out to you there in Chicago, so happy for you!! My autologous SCT looks like it's going to happen but is still somewhat early days since I just had (on Friday, 5/20) a bone biopsy, pulmonary function test, visit with clinical social worker, Electro Cardiogram and EKG. We shall see. I learned a lot about this whole process from your postings, Lindary, and am very appreciative and not as apprehensive thanks to your straight forward explanation of your journey...a good journey to cut short, eh?
hugz from Paella
I'm also glad you have posted an update, Paella.
I hope the BMB and other tests are all negative. I assume the heart test you mentioned is the "ejection fraction" ultrasound. I had one about two years ago since I had received so much Adriamycin. I was told my score was "60 to 65%." What they had not yet told me was that a perfect ejection fraction was around a 65% -- a temporary scare !
Wishing you a "65."
max
http://my.clevelandclinic.org/services/heart/disorders/heart-failure-what-is/ejectionfraction
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Good Luckpaella said:YEE HAH!!!
Super good news!! Warm warm thoughts going out to you there in Chicago, so happy for you!! My autologous SCT looks like it's going to happen but is still somewhat early days since I just had (on Friday, 5/20) a bone biopsy, pulmonary function test, visit with clinical social worker, Electro Cardiogram and EKG. We shall see. I learned a lot about this whole process from your postings, Lindary, and am very appreciative and not as apprehensive thanks to your straight forward explanation of your journey...a good journey to cut short, eh?
hugz from Paella
Wish you good lick Paella. I am glad I was able to post information you could use. It sounds like all went well. If the tests come back good then you start building up those stem cells for harvesting. Bring a good book or something to occupy your time.
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