It has almost been a year since I went to L.A. for my 2nd stem cell transplant. While my body seems to have accepted my sister's cells well; I have not had graft vs. host problems; it continues to have cancer.
After seeing that the cancer continued to grow/spread, the doctor's first option was to take me off the anti-rejection meds and hope that it would cause something called graft vs. disease to happen. They were hoping my sister's cells would just go crazy, killing that cancer. Unfortunately, this didn't happen.
Next, my doctor put me on an oral medication called Afinitor. It says it is an anti-rejection medication, but I believe the doctor said they used it to try to stimulate my immune system to fight cancer growth. (Don't quote me on that one.)
Since my cancer seemed to be unresponsive, and continued to worsen, I restarted chemotherapy in April or May. They put me on a combination of Bendamustine and Rituximab. Bendamustine is the chemotherapy that I was on before my transplant that seemed to be quite effective. The Rituximab is not a chemotherapy, but a targeted therapy that seeks out B cells with CD20 on them.
I went for an updated PET scan in August to see how or if my cancer was responding to the treatment...and the cancer is still progressing. Most of the growth is on my left side. I have a mass that is quite large under my collarbone and into my underarm on my left side that I feel is hindering my entire left side from being able to flush out the cancer. (That of course is just my opinion.)
My doctors felt that my best option is to take the anti-pd1 drug, Keytruda. The drug is not yet approved to treat Hodgkins, but I am receiving the drug off-label, or not for its intended use. It has had good results treating recurrent Hodgkin's in the trials, however they never tested it on someone who has received and allogeneic transplant like I have. The doctor said they don't know what could happen to me; it could cause severe graft vs. host disease.
I know that the Lord's Will will be done, and I am for the most part at peace with that. I know where I am going when I die on this earth; I am going to live in Heaven, with no pain, no sadness, no cancer. I will be worshipping God and Jesus, with my fellow believers who have gone before me. I know that God would not take me out of this world and away from my children unless it was a part of His larger plan. I know that God loves my children more than I ever could, and He wouldn't take me away if it would jeopardize their future salvation. These are the truths that I hold on to when I am thinking that I might not be there for big events in their lives; graduation, marriage, birth of their children, and most importantly when they accept Christ as Savior.
That being said, that doesn't mean that I don't believe in miracles! That doesn't mean that I don't continue to pray for complete healing. I know that God holds the whole world in His hands, that He is in command of my destiny. I know that He has plans for me.
So if you will....keep me in your prayers.
Wednesday, September 16, 2015
Sunday, September 21, 2014
Transplant #2
So, after doing two more rounds of chemo, two more PET scans, and repeating all my previous tests (EKG, echo, PFT and blood work) I was approved for my second transplant. It is sort of a bittersweet accomplishment because I am ready to do the transplant and glad I got approved; but at the same time sad that I had to leave my family and just dreading the whole process.
This transplant will be a little different than my last one. The chemo I am doing this time is different and is given for a longer time period. I will have 8 days of chemo and then my rest day before they infuse the stem cells. This time, since the stem cells came from my sister and not myself there is a chance of rejection and graft versus host disease.
I started my chemo last night at about 10pm. My first chemo is Busulfan, which they are infusing over 2 hours every six hours. So I get my doses at about 10 and 4. I will get a total of 12 doses before moving on to the next chemo Fludarabine, which they give every 24 hours for a total of 5 times.
It is so much easier to think of the things that I will be missing out on by being here in LA than in finding reasons to be appreciative of it, but that is exactly what I need to do. The pastor at my church has talked about how happiness depends on what is happening to or around you, but joy is more than that, deeper than that. That is what I want to exhibit through this whole process, joy.
Thank you for your continued prayers.
This transplant will be a little different than my last one. The chemo I am doing this time is different and is given for a longer time period. I will have 8 days of chemo and then my rest day before they infuse the stem cells. This time, since the stem cells came from my sister and not myself there is a chance of rejection and graft versus host disease.
I started my chemo last night at about 10pm. My first chemo is Busulfan, which they are infusing over 2 hours every six hours. So I get my doses at about 10 and 4. I will get a total of 12 doses before moving on to the next chemo Fludarabine, which they give every 24 hours for a total of 5 times.
It is so much easier to think of the things that I will be missing out on by being here in LA than in finding reasons to be appreciative of it, but that is exactly what I need to do. The pastor at my church has talked about how happiness depends on what is happening to or around you, but joy is more than that, deeper than that. That is what I want to exhibit through this whole process, joy.
Thank you for your continued prayers.
Monday, August 4, 2014
One more year
I was looking back at my blog and realized that I haven't updated it in over a year...oops! To be honest, I get tired of being a Debbie Downer, I get tired of getting good news and then bad news...so I got tired of sharing it too.
Last June I was told I still had some spots on my scan but I was in remission. When I went for a follow-up scan in August, the cancer was all over. I remember the scan report saying that all lymph systems were involved and there was activity in my bones...it wasn't good news at all.
The doctors talked about my options at the time. They really wanted me to get on this drug trial, but I missed the cutoff, so they began me on a new (to me) chemo treatment of Bendamustine. I had treatment two days a week every 4 weeks. I completed a total of six cycles over the next several months. Some of my treatments had to be pushed back because my counts hadn't recovered as well as they needed to in order to receive the next treatment. This treatment has been really hard on my platelet counts.
In January, I believe it was after 3 or 4 cycles of treatment, I had a GREAT scan! It said that pretty much everything was gone. So, after a positive scan my doctors began to prepare for the next steps and plan out the future treatment plan. They said that my best option of getting rid of my cancer would be to do another stem cell transplant, this time with donor cells instead of my own. There is a 25% chance of having a sibling as a match and I figuring having three siblings just increased those chances. My siblings and I sent in our blood samples so that it could be determined if any of them were my HLA match. I was relieved when we found out that my sister was a match!
During this time, I finished my 6 cycles of treatment and also completed my tests required for approval; to make sure I am healthy enough for transplant. The transplant was approved and then it was my sisters turn to have tests to make sure she was healthy enough to donate. After they got her results; and she of course was healthy enough; they started the mobilization of her cells. She had to get a shot of Neupogen daily for 4 days and then she went to the hemapheresis unit of UCLA and they collected her stem cells. She was able to get all they needed after one day of donation so she was able to go home.
Before I could be admitted for my transplant they needed one last test, an updated PET scan. It had been a couple of months since my last chemo and I had started to feel some swollen lymph nodes so it wasn't really a surprise to me when I found out my scan wasn't very good. They started me back on my chemo right away. The plan is to scan me again in a few weeks and see whether I need another cycle of treatment or if I can go to transplant. So, that is where I am at now. Just waiting to see what the next scan says.
Last June I was told I still had some spots on my scan but I was in remission. When I went for a follow-up scan in August, the cancer was all over. I remember the scan report saying that all lymph systems were involved and there was activity in my bones...it wasn't good news at all.
The doctors talked about my options at the time. They really wanted me to get on this drug trial, but I missed the cutoff, so they began me on a new (to me) chemo treatment of Bendamustine. I had treatment two days a week every 4 weeks. I completed a total of six cycles over the next several months. Some of my treatments had to be pushed back because my counts hadn't recovered as well as they needed to in order to receive the next treatment. This treatment has been really hard on my platelet counts.
In January, I believe it was after 3 or 4 cycles of treatment, I had a GREAT scan! It said that pretty much everything was gone. So, after a positive scan my doctors began to prepare for the next steps and plan out the future treatment plan. They said that my best option of getting rid of my cancer would be to do another stem cell transplant, this time with donor cells instead of my own. There is a 25% chance of having a sibling as a match and I figuring having three siblings just increased those chances. My siblings and I sent in our blood samples so that it could be determined if any of them were my HLA match. I was relieved when we found out that my sister was a match!
During this time, I finished my 6 cycles of treatment and also completed my tests required for approval; to make sure I am healthy enough for transplant. The transplant was approved and then it was my sisters turn to have tests to make sure she was healthy enough to donate. After they got her results; and she of course was healthy enough; they started the mobilization of her cells. She had to get a shot of Neupogen daily for 4 days and then she went to the hemapheresis unit of UCLA and they collected her stem cells. She was able to get all they needed after one day of donation so she was able to go home.
Before I could be admitted for my transplant they needed one last test, an updated PET scan. It had been a couple of months since my last chemo and I had started to feel some swollen lymph nodes so it wasn't really a surprise to me when I found out my scan wasn't very good. They started me back on my chemo right away. The plan is to scan me again in a few weeks and see whether I need another cycle of treatment or if I can go to transplant. So, that is where I am at now. Just waiting to see what the next scan says.
Thursday, June 20, 2013
June2013
I am sorry that I haven't done an update recently...I had a lot of things going on at about the same time, so I hope you will forgive me. My little girl had a birthday, and the older one a recital, and my husband got to come home!!! Yay!
Also, I got an updated PET scan. The results were good. There were two small areas that showed some low activity, but the doctor says
I'M IN REMISSION!
The spots will have to be monitored, of course, but it was a good result. I am not going to lie...I wanted to be able to say I was cancer free.
The scan also showed there was some fluid around my right lung, which I had drained on Monday. They were able to get a liter of fluid out, which surprised me. I was a little uncomfortable as my lung began to expand back out. I am still a little sore where they inserted the tube, but nothing major.
Thank you for your prayers and support. Please rejoice and praise God with me for the good news that I have been given.
Also, I got an updated PET scan. The results were good. There were two small areas that showed some low activity, but the doctor says
I'M IN REMISSION!
The spots will have to be monitored, of course, but it was a good result. I am not going to lie...I wanted to be able to say I was cancer free.
The scan also showed there was some fluid around my right lung, which I had drained on Monday. They were able to get a liter of fluid out, which surprised me. I was a little uncomfortable as my lung began to expand back out. I am still a little sore where they inserted the tube, but nothing major.
Thank you for your prayers and support. Please rejoice and praise God with me for the good news that I have been given.
Friday, May 10, 2013
I'm coming home
Since my last update, I did have to get more blood and platelets while in the hospital. Then on Sunday, I was released! It was so nice to get out. My mother-in-law flew in Saturday morning, to be my caregiver when I was released. She got here just in time.
Monday, I had an appointment at the clinic. They went over some of the precautions that I will have to take over the next several months as my body continues to recover. Most of it is probably common sense; like avoiding crowds and sick people. Also, I have to avoid food that sits out like at buffets, salad bars, and fast food places. One thing that I wouldn't have thought about is avoiding people who have had recent live vaccinations. They explained that the worst ones for me to be around would be the chicken pox and shingle vaccines. When people are given these vaccines, their bodies shed them for several weeks which is fine for most people. However, with my low immune system, it could actually give me the chicken pox, which would not be good.
My blood counts were fine on Monday, so I didn't have to get any blood products. I didn't get my counts checked again until Thursday, and found out today that my counts are good. They are all coming up by themselves. My platelets are high enough that they can now take out my line. They are trying to get it scheduled for Monday or Tuesday and then I can go home!!! Yay!!!
I am not sure when they will scan me to make sure the cancer is gone but I will let you know when I know.
Thank you for the prayers. I am going home soon!!!
Thursday, May 2, 2013
Two weeks down
A week ago I received my stem cell transplant. They brought my stem cells in a portable freezer and defrosted them one at a time. Once it was defrosted, they began to infuse them through my IV. Each bag needed to be transfused within 15 min of being defrosted. The stem cells, or maybe it was the preservative added to them, made the whole room smell and gave me a strong taste in my mouth. I had heard that it would smell, but luckily it didn't smell bad. My nurse for the day said she thought it smelled like canned sweet corn, so I'll go with that. It was a sweet smell and a sweet taste. A few days later when I was walking the halls, I smelled that smell and knew someone else had received their transplant.
Since then, my body has just been trying to recover. I re-read my last post and thought, "Well that was kind of dramatic." However the truth is I wouldn't have survived out of the hospital. Since my transplant I have received blood again and platelets twice. For the last several days I have been getting neupogen injections to raise my white count.
I'm not sure when, but I developed a rash over my body. At first I thought it was a reaction to the adhesive, but then thought it was caused by this strong anti-bacterial soap they were putting in my bath water. However, it could have been a reaction to the chemo or some of the other meds they have me on. I think it's getting better, but some parts of my skin look worse due to the petechial hemorrageing caused by my low platelet counts.
I also have some mouth sores on my right side. So, the right side of my mouth and throat are sore. It makes it more difficult to eat the already not very appetizing food.
The sores and rash should leave as my counts get higher and my body can start healing. Other than the mouth pain, I have been feeling fine. I'm just ready to get out of here. Hopefully they will let me out by Monday. It will be nice to go outside again, and to have different food to eat. Then I will just be one step closer to actually getting to go home and seeing my family again.
My hair began falling out by the handfuls, so today I let them shave it off....Oh well...it will grow back again.
Thank you for your prayers. God is getting me through this!
Since then, my body has just been trying to recover. I re-read my last post and thought, "Well that was kind of dramatic." However the truth is I wouldn't have survived out of the hospital. Since my transplant I have received blood again and platelets twice. For the last several days I have been getting neupogen injections to raise my white count.
I'm not sure when, but I developed a rash over my body. At first I thought it was a reaction to the adhesive, but then thought it was caused by this strong anti-bacterial soap they were putting in my bath water. However, it could have been a reaction to the chemo or some of the other meds they have me on. I think it's getting better, but some parts of my skin look worse due to the petechial hemorrageing caused by my low platelet counts.
I also have some mouth sores on my right side. So, the right side of my mouth and throat are sore. It makes it more difficult to eat the already not very appetizing food.
The sores and rash should leave as my counts get higher and my body can start healing. Other than the mouth pain, I have been feeling fine. I'm just ready to get out of here. Hopefully they will let me out by Monday. It will be nice to go outside again, and to have different food to eat. Then I will just be one step closer to actually getting to go home and seeing my family again.
My hair began falling out by the handfuls, so today I let them shave it off....Oh well...it will grow back again.
Thank you for your prayers. God is getting me through this!
Wednesday, April 24, 2013
One week down..
One week ago, I flew into LA and was admitted to the hospital. While time has gone by at a normal pace...I really wish I could just fast forward through the coming weeks. I am ready to go home... but now I have to stay here. After all that chemo over the last week, my blood counts will be dropping and my immune system will down. I have to stay in the hospital so I can live through this. This next week is going to be the hard one.
I know that God is in control and that He will get me through this, but sometimes I let the fear and anxiety get the best of me. Please keep me in your prayers. Just say a quick prayer for me when I come to your mind.
Tomorrow they will be giving me my stem cells back. Then, I just have to get my counts up.
I know that God is in control and that He will get me through this, but sometimes I let the fear and anxiety get the best of me. Please keep me in your prayers. Just say a quick prayer for me when I come to your mind.
Tomorrow they will be giving me my stem cells back. Then, I just have to get my counts up.
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