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My Stem Cell Transplant journey

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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. 

 

 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

lindary,

Things seem to go in the right direction. Good luck with the SCT!

Best wishes

Sten

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3489
Joined: May 2012

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

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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.

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

You can do it Linda!  Stay strong! 

illead's picture
illead
Posts: 860
Joined: Aug 2012

You have remained so upbeat through having to wait and worry twice.  We look forward to good news, please keep us posted as you can.

Hang in there,

Becky

paella's picture
paella
Posts: 81
Joined: Jun 2012

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

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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. 

paella's picture
paella
Posts: 81
Joined: Jun 2012

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

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

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! 

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

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

 

Kaniksu
Posts: 54
Joined: Nov 2015

Lindary.. My goodness you have been through a lot and sounds like a lot more to come...sending positive healing thoughts your way...nancy 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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.  

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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.

 

 

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

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

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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

Simon24
Posts: 45
Joined: Oct 2015

Wishing you all the best with your SCT.  You have such a positive attitude and are a real inspiration to many.             Simone

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015
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!
 
 
OO7's picture
OO7
Posts: 282
Joined: Sep 2014

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!  

paella's picture
paella
Posts: 81
Joined: Jun 2012

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

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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
Posts: 1
Joined: Mar 2016

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's picture
lindary
Posts: 695
Joined: Mar 2015

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's picture
lindary
Posts: 695
Joined: Mar 2015

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's picture
paella
Posts: 81
Joined: Jun 2012

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's picture
lindary
Posts: 695
Joined: Mar 2015

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's picture
Rocquie
Posts: 839
Joined: Mar 2013

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's picture
Sal0101
Posts: 132
Joined: Sep 2015

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

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

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.

 

DadysGirl
Posts: 346
Joined: Aug 2011

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

My very best wishes....

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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. 

po18guy
Posts: 1081
Joined: Nov 2011

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?   

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3489
Joined: May 2012

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

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po18guy
Posts: 1081
Joined: Nov 2011

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.  

paella's picture
paella
Posts: 81
Joined: Jun 2012

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

 

 

po18guy
Posts: 1081
Joined: Nov 2011

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.  

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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
Posts: 1081
Joined: Nov 2011

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.  

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lindary
Posts: 695
Joined: Mar 2015

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. 

DadysGirl
Posts: 346
Joined: Aug 2011

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. 

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lindary
Posts: 695
Joined: Mar 2015

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.

paella's picture
paella
Posts: 81
Joined: Jun 2012

Thanks for keeping us in the loop.  Hope you hear good news soon about the match.

Paella

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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. 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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. 

 

Kaniksu
Posts: 54
Joined: Nov 2015

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...

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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. 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

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

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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!

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

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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