My Stem Cell Transplant journey
I know I've posted bits & pieces on several topics and deicded it might be easier to pull it all together.
Summary:
Dec 2014 - Diagnosed with follicular non-hodgkins lymphoma. Dr also found I had pluerisy of the right lung caused by the lymphoma.A catheter was put in so we could drain the fluid on a regular basis until the lymph nodes by the lung statred working again.
Jan 2015 - First R-Chop session. About 15 days later had a perforated bowel when the swollen node in my gut shrunk and pulled out a piece of the bowel.
Feb 2015 - Once surgeon gave his ok the second R-chop was given.
April 2015 - Pluerisy catheter removed. No fluid around lung for over a month.
May 2015 - Last R-Chop.
July 2015 - Ct scan show mas in abdomen smaller but still there. Decision to do Rice followed by Stem Cell.
Aug 2015 - First of 3 RICE treatments done.
Oct 2015 - Last Rice treatment done. Did need to have a blood transfusion at the time of the chemo and then again about a week later. I had bunch of tests in preparation for SCT. PET/CT scans show no sign of the cancer. Lung & heart ok. Something showed up in EKG but it was thought to be the result of the chemo.
Nov 2015 - Started meetings with SCT team about what is going to happen and when. Day before the Neuprgen shots were to start SCT dr finds something abnormal in latest bone marrow biopsy. Everything put on hold until after the first of the year.
Jan 2016 - Planning starts again. Had new bone marrow biopsy & heart tests. Bone marrow came back with no sign of bad cells (cancer or abnormal). EKG showed same thing as last time. Now I need to see a cardiologist as well as re-visit the surgeon who is going to put the catheter in for the t-cell harvesting. Also have a new PEt/CT scan scheduled. If all goes well I will start the neupogen shots the beginning of Feb, followed by the harevsting of same and then be admitted to the hospital for the SCT process.
Comments
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OrdealOO7 said:New thread
Glad you started a new post, making it easy to follow your progress.
Hope your white blood cell counts are on their way up all goes as planned.
You'll be in my thoughts and prayers.
I pray, hope, and believe that all of these delays and trials will lead to your total recovery and wellness. You are a fighter ! You are so well informed and aware of your situation that it makes me believe that all will be, and go, well for you.
max
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need dataOrdeal
I pray, hope, and believe that all of these delays and trials will lead to your total recovery and wellness. You are a fighter ! You are so well informed and aware of your situation that it makes me believe that all will be, and go, well for you.
max
I am an information junkie and the internet fuels my habit. Of course I have had to learn early on how to filter trash from information. If nothing else, I go to Wiki.
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Your stem cell transplant journey
Hey, Lindary, Paella here –
I for one am another Lindary rooter one who is also glad you started this thread because I was all over the place trying to keep everything straight in your labyrinthine journey. And didn’t it all start when you happened to mention to your doc the diarrhea problem in November 2014? Hard to believe you’ve been through so much in less than a year and a half!
Did you end up starting Neupogen beginning of Feb?...oh and now a Cardiologist?! I’m not being flip, but come ON…do they at least get you into see the cardiologist right away?
Do you have to go through another round of chemo (something like BEAM chemo?) before they start harvesting or does that happen after they’re DONE harvesting? And I’ve read that it’s about a week between harvesting and re-introduction of stem cells, is that right? Is there ANY time when you are pretty much in quarantine…or is that for only for the allogenic transplants? If not quarantined, are these mostly in-patient procedures or will you come and go?
Meanwhile, am I right in assuming that through all this you have to stay flu/infection/cold/ free in order to start the harvesting?
Where will they actually install (wrong word….but) the catheter for the t-cell harvesting?
Oh so many questions.
Please keep all of us in the your loop and know that we are rooting, cheering and thinking of you often. If I were in Chicago I'd bring you some of my Carrot/Ginger Soup (we did live there between '73 and '82 and loved it...of course we were kids in our 20's...lived near DePaul, never had to shovel a car out of the snow).
Warmest thoughts!
Paella
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Answerspaella said:Your stem cell transplant journey
Hey, Lindary, Paella here –
I for one am another Lindary rooter one who is also glad you started this thread because I was all over the place trying to keep everything straight in your labyrinthine journey. And didn’t it all start when you happened to mention to your doc the diarrhea problem in November 2014? Hard to believe you’ve been through so much in less than a year and a half!
Did you end up starting Neupogen beginning of Feb?...oh and now a Cardiologist?! I’m not being flip, but come ON…do they at least get you into see the cardiologist right away?
Do you have to go through another round of chemo (something like BEAM chemo?) before they start harvesting or does that happen after they’re DONE harvesting? And I’ve read that it’s about a week between harvesting and re-introduction of stem cells, is that right? Is there ANY time when you are pretty much in quarantine…or is that for only for the allogenic transplants? If not quarantined, are these mostly in-patient procedures or will you come and go?
Meanwhile, am I right in assuming that through all this you have to stay flu/infection/cold/ free in order to start the harvesting?
Where will they actually install (wrong word….but) the catheter for the t-cell harvesting?
Oh so many questions.
Please keep all of us in the your loop and know that we are rooting, cheering and thinking of you often. If I were in Chicago I'd bring you some of my Carrot/Ginger Soup (we did live there between '73 and '82 and loved it...of course we were kids in our 20's...lived near DePaul, never had to shovel a car out of the snow).
Warmest thoughts!
Paella
Paella,
Yes it started with a diarrhea problem. Like so many here, never thought of cancer.
So Feb 10, 11 & 12 I got neupogen to help rebuild up the white cell count which had fallen to 1.01. On Feb 16 it was up to 3.00.
I looked up the results on the ECG and basically there is an indication that sometime in my past I had a heart attack. I read through the list of signs of a heart attack for women and there were a few I had but not along with any other signs at teh same time. So Wed this week I see the cardiologist.
Then Thur is the PET/CT scan so they have a current one.
Fri see the surgeon who is going to put the catheter in for the stem cell process.
March 1 I meet with the Stem Cell team to go over everything.
March 3 my husband & I get training on him giving me the neupogen shots.
March 4,5, 6 - get the neupogen shots at home.
March 7 -Neupogen shot at home, have the surgery to put the catheter in and Mozabil shot to push t-cells into the blood stream.
March 8 - Neupogen shot at home. The t-cells are harvested which takes all day. Diarrhea is likely during the process as well as a drop in calcium in the body. (I heard a "day" is anything from 4 to 6 hours. If there are not enough, I get another shot of Mozabil.Then repeat on March 9. If not enough then repeat again on March 10. Collected t-cells are frozen.
March 11 - if enought t-cells are collected I am to be admitted to the hospital to start the high dose chemo. I will get this for 6 days. I believe the quarantine starts about this point.
March 17 - The T-cells that were collected are thawed and transfused back. I think the catheter is removed at this time, unless it is removed after the harvesting. (I need to check on that.)
From what I have read and heard, during this time I may need transfusions of blood and or platlets if they get too low. I am likely to get an infection and have to be treated for it.
I grew up in Chgo, northwest side. Moved to the suburbs when I got married. Part of me misses the city which may be why our youngest now lives there. Gives me a reason to go to the sity to see her.
I think I covered all of your questions. I should have more updates later this week.
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Neupogen shotslindary said:Answers
Paella,
Yes it started with a diarrhea problem. Like so many here, never thought of cancer.
So Feb 10, 11 & 12 I got neupogen to help rebuild up the white cell count which had fallen to 1.01. On Feb 16 it was up to 3.00.
I looked up the results on the ECG and basically there is an indication that sometime in my past I had a heart attack. I read through the list of signs of a heart attack for women and there were a few I had but not along with any other signs at teh same time. So Wed this week I see the cardiologist.
Then Thur is the PET/CT scan so they have a current one.
Fri see the surgeon who is going to put the catheter in for the stem cell process.
March 1 I meet with the Stem Cell team to go over everything.
March 3 my husband & I get training on him giving me the neupogen shots.
March 4,5, 6 - get the neupogen shots at home.
March 7 -Neupogen shot at home, have the surgery to put the catheter in and Mozabil shot to push t-cells into the blood stream.
March 8 - Neupogen shot at home. The t-cells are harvested which takes all day. Diarrhea is likely during the process as well as a drop in calcium in the body. (I heard a "day" is anything from 4 to 6 hours. If there are not enough, I get another shot of Mozabil.Then repeat on March 9. If not enough then repeat again on March 10. Collected t-cells are frozen.
March 11 - if enought t-cells are collected I am to be admitted to the hospital to start the high dose chemo. I will get this for 6 days. I believe the quarantine starts about this point.
March 17 - The T-cells that were collected are thawed and transfused back. I think the catheter is removed at this time, unless it is removed after the harvesting. (I need to check on that.)
From what I have read and heard, during this time I may need transfusions of blood and or platlets if they get too low. I am likely to get an infection and have to be treated for it.
I grew up in Chgo, northwest side. Moved to the suburbs when I got married. Part of me misses the city which may be why our youngest now lives there. Gives me a reason to go to the sity to see her.
I think I covered all of your questions. I should have more updates later this week.
Thanks for the many answers!
Just a quick note - 4 years ago my Blue Shield (what they would today call a "cadillac plan") would not pay for Neupogen shots received at home. I had to be AT the hospital and it had to be given by a "medical professional". At 67 I'm now on Medicare and I think the same thing is true but am not sure. Also not sure if Neulasta has the same restrictions insurance-wise.
Best - Paella
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Journey
Linda, I continue to be amazed by you. You have such a wonderful attitude and I bet your doctors, nurses, and everyone on your care team appreciates it. I think it would be hard to take care of someone who was negative and grumpy all the time.
Your timelines are right up my alley as that is the way I like to keep up with things. I bet you also keep meticulous medical records.
Thank you for continuing to share your journey with us. You are very inspiring.
Prayers and hugs,
Rocquie
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Neupogen shotslindary said:Answers
Paella,
Yes it started with a diarrhea problem. Like so many here, never thought of cancer.
So Feb 10, 11 & 12 I got neupogen to help rebuild up the white cell count which had fallen to 1.01. On Feb 16 it was up to 3.00.
I looked up the results on the ECG and basically there is an indication that sometime in my past I had a heart attack. I read through the list of signs of a heart attack for women and there were a few I had but not along with any other signs at teh same time. So Wed this week I see the cardiologist.
Then Thur is the PET/CT scan so they have a current one.
Fri see the surgeon who is going to put the catheter in for the stem cell process.
March 1 I meet with the Stem Cell team to go over everything.
March 3 my husband & I get training on him giving me the neupogen shots.
March 4,5, 6 - get the neupogen shots at home.
March 7 -Neupogen shot at home, have the surgery to put the catheter in and Mozabil shot to push t-cells into the blood stream.
March 8 - Neupogen shot at home. The t-cells are harvested which takes all day. Diarrhea is likely during the process as well as a drop in calcium in the body. (I heard a "day" is anything from 4 to 6 hours. If there are not enough, I get another shot of Mozabil.Then repeat on March 9. If not enough then repeat again on March 10. Collected t-cells are frozen.
March 11 - if enought t-cells are collected I am to be admitted to the hospital to start the high dose chemo. I will get this for 6 days. I believe the quarantine starts about this point.
March 17 - The T-cells that were collected are thawed and transfused back. I think the catheter is removed at this time, unless it is removed after the harvesting. (I need to check on that.)
From what I have read and heard, during this time I may need transfusions of blood and or platlets if they get too low. I am likely to get an infection and have to be treated for it.
I grew up in Chgo, northwest side. Moved to the suburbs when I got married. Part of me misses the city which may be why our youngest now lives there. Gives me a reason to go to the sity to see her.
I think I covered all of your questions. I should have more updates later this week.
Linda,
I gave myself neupogen shots at home. I was shocked when I went through the training, did my first one and discovered how easy it was. They trained me to give them because I needed so many, and of course several days in a row. My insurance covered the home delivery but it did take a few calls. You can do it!! Not only the shots (which is the easy part) but the entire SCT ordeal. Again.. You can do it!
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This weekKaniksu said:Your Journey
Lindary.. My goodness you have been through a lot and sounds like a lot more to come...sending positive healing thoughts your way...nancy
I do get into bad moods now and then but they don't seem to last long. If nothing else, they are gone after a night's sleep. I don't remeber my parents ever being grumpy or their siblings (my aunts & uncles). It's alway sbeen a "ok let move forward" attitude. I do know the insurnace had approved the neupogen last Nov but them we cancelled it because the SCT was put on hold. I am hoping we don't have any problems getting it this time.
This week has been busy. Tues blood test showed the red, white & hemoglobin counts have gone down a bit. Platlets have gone up. The blood test today showed little change either way. Wed was the appt with the cardio dr went well. He feels the reading from the ECG could be a false-positive which he says is not unusual for women. Just to be safe he ordered a stress test which was scheduled for Fri. Thur I had a new PET/CT scans done. Those results should be available Mon or Tues of next week.
Then there was today. Stress test scheduled at 9 am. It usually takes us 30 - 40 mins to get to Rush. Sometimes it has taken an hour. Today we lief the house 1 1/2 hours before the appt and got there barely in time. Jusst as I am getting ready for the test they come in and say we have to re-schedule. Reason, Dr office said I could take my blood pressure med in the am. People doing the test said I shouldn't have taken it since it is a beta-blocker. Person at Dr office checked a list but apparently it was not complete. I should have double checked the categry my blood pressure med was in. Anyway, it is resheduled for Tues after my appt with my SCT dr.
For the neupogen shots we have already decided that my husband will give me the shots. I am not sure I can give myself a shot.
Next week is going to be busier. Meetings at work on things that need to be discussed before I go into the hospital. Some stuff that has to be cleaned up or organized or else my husband will do it and it will take me months to find. I am almost looking forward to the time in the hospital, regardless of how I feel. It will be a bit of a break from a lot of things.
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Change in schedulelindary said:This week
I do get into bad moods now and then but they don't seem to last long. If nothing else, they are gone after a night's sleep. I don't remeber my parents ever being grumpy or their siblings (my aunts & uncles). It's alway sbeen a "ok let move forward" attitude. I do know the insurnace had approved the neupogen last Nov but them we cancelled it because the SCT was put on hold. I am hoping we don't have any problems getting it this time.
This week has been busy. Tues blood test showed the red, white & hemoglobin counts have gone down a bit. Platlets have gone up. The blood test today showed little change either way. Wed was the appt with the cardio dr went well. He feels the reading from the ECG could be a false-positive which he says is not unusual for women. Just to be safe he ordered a stress test which was scheduled for Fri. Thur I had a new PET/CT scans done. Those results should be available Mon or Tues of next week.
Then there was today. Stress test scheduled at 9 am. It usually takes us 30 - 40 mins to get to Rush. Sometimes it has taken an hour. Today we lief the house 1 1/2 hours before the appt and got there barely in time. Jusst as I am getting ready for the test they come in and say we have to re-schedule. Reason, Dr office said I could take my blood pressure med in the am. People doing the test said I shouldn't have taken it since it is a beta-blocker. Person at Dr office checked a list but apparently it was not complete. I should have double checked the categry my blood pressure med was in. Anyway, it is resheduled for Tues after my appt with my SCT dr.
For the neupogen shots we have already decided that my husband will give me the shots. I am not sure I can give myself a shot.
Next week is going to be busier. Meetings at work on things that need to be discussed before I go into the hospital. Some stuff that has to be cleaned up or organized or else my husband will do it and it will take me months to find. I am almost looking forward to the time in the hospital, regardless of how I feel. It will be a bit of a break from a lot of things.
I got a call today from the SCT team contact. The SCT has been pushed back a week. Reason is - the Dr feels that even though the blood counts are at an acceptable level she feels if we wait a week it will give my system to build up the counts higher. This should improve the quantity of t-cells they can collect. So I am guessing we could be in a week-to-week situation. My counts were good on 1/26 when I got the last Rituan treatment. Then by 2/9 they were all down with the WBC at 1.01. Since then they have been coming up but none of the big 4 (WBC, RBC, Hgb & Plat) at back to the level of 1/26 or better. I know where I hope they will be by next Monday.
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Sitting in Limbolindary said:Change in schedule
I got a call today from the SCT team contact. The SCT has been pushed back a week. Reason is - the Dr feels that even though the blood counts are at an acceptable level she feels if we wait a week it will give my system to build up the counts higher. This should improve the quantity of t-cells they can collect. So I am guessing we could be in a week-to-week situation. My counts were good on 1/26 when I got the last Rituan treatment. Then by 2/9 they were all down with the WBC at 1.01. Since then they have been coming up but none of the big 4 (WBC, RBC, Hgb & Plat) at back to the level of 1/26 or better. I know where I hope they will be by next Monday.
Bless you, Linda. I suppose all the delays and changes you have had and continue to have are normal. I know you have an excellent hospital and faith in your medical team. Personally, I find limbo one of the hardest places to be. Perhaps I'm not as patient as you and usually find myself wanting to get on with it.
Here is one of my favorite songs on the subject: Sitting in Limbo by The Neville Brothers. Enjoy.
Hugs,
Rocquie
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SongRocquie said:Sitting in Limbo
Bless you, Linda. I suppose all the delays and changes you have had and continue to have are normal. I know you have an excellent hospital and faith in your medical team. Personally, I find limbo one of the hardest places to be. Perhaps I'm not as patient as you and usually find myself wanting to get on with it.
Here is one of my favorite songs on the subject: Sitting in Limbo by The Neville Brothers. Enjoy.
Hugs,
Rocquie
Never heard that song. I can see why it is a favorite. I do want to get on with the SCT but I am using this time to get thngs done at work and at home. Espcially to see my kids and grandkids.
Linda
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Best wisheslindary said:Song
Never heard that song. I can see why it is a favorite. I do want to get on with the SCT but I am using this time to get thngs done at work and at home. Espcially to see my kids and grandkids.
Linda
Wishing you all the best with your SCT. You have such a positive attitude and are a real inspiration to many. Simone
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All Systems GOlindary said:Change in schedule
I got a call today from the SCT team contact. The SCT has been pushed back a week. Reason is - the Dr feels that even though the blood counts are at an acceptable level she feels if we wait a week it will give my system to build up the counts higher. This should improve the quantity of t-cells they can collect. So I am guessing we could be in a week-to-week situation. My counts were good on 1/26 when I got the last Rituan treatment. Then by 2/9 they were all down with the WBC at 1.01. Since then they have been coming up but none of the big 4 (WBC, RBC, Hgb & Plat) at back to the level of 1/26 or better. I know where I hope they will be by next Monday.
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!0 -
Calm and steady you arelindary 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!may you benefit greatly from the power of a sound and positive mind. Be good to yourself Linda and Kick A_ _!
I look forward to your progress and mostly putting this behind you.
God speed, you are I my prayers and I wish you all my best. May your inner warrior be on autopilot and you take care of your self!
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Will be thinking about you!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!Hope today's Neupogen training and First Shot went well. You sound great and positive and strong...will be thinking about you every day. Keep writing!
Paella
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