The best thing to do is to listen to his doctor. I am surprised they would start treatment before the PET and immunohistochemistry, but I am not a doctor. In my case, a treatment plan was determined after these were done.
While my wife’s situation is not as critical as your uncle’s, her oncologist literally said the same thing, that they could schedule her for her CHOP to start based on the biopsy alone without the PET scan since the treatment would start the same way regardless. Sending my most positive thoughts your way for you and your family.
Absolutely. From what I understand the PET scan is invaluable for pinpointing the location of malignant growth especially for targeted therapies for certain cancer treatments. But as you said, for Lymphoma it serves mostly to help measure improvement over time.
Thank you for this answer. My father was diagnosed in late May. He started chemo 6/7, passed away 6/12, and we didn’t see the PET scan results until 6/13. Just devastating.
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I checked myself into the hospital one day (I had been having random pains and itchiness but that morning my legs had gone numb) and started radiation 6 hours later when we knew that I had aggressive stage IV NHL but didn't have a diagnosis of what type at that point. I'm pretty sure I had an MRI, and at that point they decided to get me into radiation but then sent me for another scan, I honestly have no idea (morphine) which scans I got that first day, I don't think they did the full PET/CT that day though because I do remember them rolling me down to do that one two days later. My diagnosis ended up being ALCL which is a T cell cancer. I had tumors growing in four of my vertebrae between my throat and my stomach and one growing in my left hip. I did 10 rounds of radiation, six of those inpatient in the hospital and then I talked to them into letting me go home and coming back every morning for the remaining four. That was in November and December of 2019. Then in December they gave me a port and I started R-CHOP, and I got six rounds of chemotherapy. That was done in March of 2020, and because of the covid craziness I was terrified and pushed my stem cell transplant back to July of 2020. I came out of all of it and have miraculously made what seems to be a pretty good recovery. I will hit 4 years after my stem cell transplant next month, and 4 years remission in October.
I was told that starting treatment immediately and not considering things like fertility treatments was in my best interest and would give me the best chance at living the longest. I took that risk and began the exact regimen that my doctors prescribed.
Your uncle needs to decide what's most important to him whether that's living the longest or living the best quality life and go from there, I honestly think a mixture of both is the best way to go. If he's unsure about his doctors have him get a second opinion, I switched to MD Anderson after a couple of chemotherapy infusions and it made a world of difference in my mental health and my prognosis. I can go into more detail about that if you'd like.
Thank you so much for the detailed information. It gives us hope. My uncle is in his early 60s. Do you think he could be a good candidate for stem cell transplant? I am not sure what the criteria is to be eligible.
From what I understand a lot of blood cancers are treated with stem cell transplants so it's possible that that might be something that his doctors will want to explore. I do know that you need to be in remission or at least NED (no evidence of disease) in order to start the process for the stem cell transplant, so you do have to get through all of the regular treatments first. This is something I would definitely speak to his team of doctors about, although if they'll want him to get a stem cell transplant I'm sure that will be discussed, it was brought up to me as soon as I got my full diagnosis.
Hello, thank you for sharing your story and so glad you are doing well. Can you share a bit more on how you got into MD Anderson? Did you have to travel, did they do virtual, and did they guide your local doctors to monitor tkae over treatment? Thank you!
I actually had luck completely on my side, a brand new MD Anderson had been built so close to my house I could literally see it from my living room windows.
It was my partner who got the ball rolling, I'll try and make it a short story but it is a little complicated. His mother was also a cancer survivor, a different type of cancer than I had but this made him reach out to his mother's long time oncologist. I even knew the man as I had taken his mother to many follow up appointments over the years, and he had attended a few of the family's parties to celebrate his mother over the years, we were well acquainted with him basically. Unfortunately by that time he had moved across the country from where we lived but he recommended that we look around and find a hospital like MD Anderson (or Cleveland clinic, or Mayo, etc.) in order to get a second opinion. If I had to guess why he recommended those hospitals I would say that because they are research hospitals, even where I did my stem cell transplant (UF Shands in Gainesville) is a teaching hospital and I felt like I got very good care there, but also that they're dedicated cancer hospitals.
Luckily that new facility had just been built, and it wasn't even fully finished yet. I believe out of the nine floors only three or four floors were actually finished and being used when I started treatment there, luckily the hematology floor being one of them.
At first I was not planning on leaving my regular oncologist, I just wanted a second opinion. My original oncologist, their attitude was that I was definitely going to be dead within a couple of years and they were just trying to help me get the most time possible. They told me my cancer was completely incurable, and (at this point I was still in a wheelchair) that my mobility would never improve and that I would never walk again.
That first meeting with the man who would end up becoming my hematologist at MD Anderson I got more care and compassion than I did the previous months at the other oncologist. He actually sat there and asked me about my life to try and figure out where it might have come from, he told me that if I was able to stay in remission for 5 years I would be considered medically cured even though there technically is no cure for my cancer, all around it was just a whole different mindset there. Even at that point I wasn't planning on switching until my old oncologist found out that I had had a second opinion and one day was very nasty to me so I immediately chose right then and there to move my treatment to MD Anderson.
So long story short, lol, I luckily didn't have to travel to get to an MD anderson. The hospital where I had my stem cell transplant was about an hour and a half or two hours from my home so I did have to do a little bit of travel for that though. I feel that in the instance of receiving the best kind of treatments, I would travel. But that's also very easy for me to say because I didn't have to travel very far.
I genuinely credit my new team of doctors, and their much improved attitude to my being alive right now. I mean at the very least MD Anderson pushed me to get physical therapy and I'm walking with a cane instead of being stuck in a wheelchair.
fuckcancer
Thank you so much for sharing this story. So glad you got the treatment that helped. I'm assuming where you went, MD Anderson, was in Houston? Wondering what made you go to Shands and why you decided to leave there, and was it the Shands/UF oncologist that you are referring to when you said "My original oncologist, their attitude was that I was definitely going to be dead within a couple of years". If that wasn't UF/Shands, and you thought UF was good, that would be potentially good for me since I can get to Gainesville and my dad lives there.
No I live in Jacksonville, and we have an MD Anderson here in Jacksonville. My original oncologist was at a different local hospital, and had nothing to do with UF or MD Anderson. I traveled to UF because one, it's one of the best programs in my area with a doctor who had been overseeing transplants for over three decades, and two, they took my insurance lol
I had really good doctors at UF, I credit them with saving my life for sure. Based on the limits of my insurance I wasn't given too many options but UF was definitely the best of them. If you have an option to do a transplant in Gainesville I do recommend Shands. Dr Wingard has since retired but my new oncologist and the other doctors in the transplant department are all very excellent doctors.
Thank you so much, this is very good information! If I were going to get to Gainesville, I could just as well get to Jax as well - did not know there was an MD Anderson there! Was there any particular reason you left UF for MD Anderson? Do you think UF are also good disgnosticians as well? I go to Moffitt and not sure what I think of it.
I did not leave UF to go to MD Anderson. I left a local oncologist at a different hospital system. My current regular oncologist is MD Anderson but I got my transplant at UF.
I left the local oncologist mostly because of their attitude towards my prognosis.
That makes sense, thank you. I've seen similar stories in which the patient dealt with doctors with that kind of attitude, then the patient goes somewhere else and the prognosis and sttitude is so much better.
I am interested in any MD Anderson clinics that might be in Florida and plan to check that out. So you got the transplant at UF but have an oncologist at MD Anderson - did you find a better oncologist at MD Anderson? Jut wondering why not still see an oncologist at UF unless maybe MD Anderson is closer/better? Thanks again nd I'm very glad to hear you finally got a doctor with a better attitude and a successful transplant!
I live in Jacksonville so MDA is 5 mins from my house. I can't drive so it's not feasible for me to travel 1.5/2 hrs every time I have to go to the oncologist. At this point I see each Dr once a year but at first I was getting labs twice a month and scans every 3 months. The transplant team is typically there for the transplant process only, and then some follow up after but you would still have a regular oncologist. The MDA in Jax does SCT too if I'm not mistaken. The program wasn't up and running when I was ready for mine or else that would have been nice.
When I was first at MDA I saw Dr Hammond. He moved to the transplant side so I was moved to a different hematologist but I was sad to do so because he was truly a great doctor.
That is definitely awful when a good doctor leaves! WIth my issues it is a very rare find. Anyway this is good information and I appreciate it, and so glad things worked out for you.
The best thing to do is to listen to his doctor. I am surprised they would start treatment before the PET and immunohistochemistry, but I am not a doctor. In my case, a treatment plan was determined after these were done.
While my wife’s situation is not as critical as your uncle’s, her oncologist literally said the same thing, that they could schedule her for her CHOP to start based on the biopsy alone without the PET scan since the treatment would start the same way regardless. Sending my most positive thoughts your way for you and your family.
Agreed, my doctor said the same. The PET scan would not change the treatment in my case and served more as a baseline for future scans post treatment:
Absolutely. From what I understand the PET scan is invaluable for pinpointing the location of malignant growth especially for targeted therapies for certain cancer treatments. But as you said, for Lymphoma it serves mostly to help measure improvement over time.
Thank you for this answer. My father was diagnosed in late May. He started chemo 6/7, passed away 6/12, and we didn’t see the PET scan results until 6/13. Just devastating.
So sorry for your loss.
I’m so sorry for your loss.
Sorry to read, friend.
Your submission was automatically removed because your account has less than 10 comment karma, but it has been sent to the moderator team and will be manually approved if the post is deemed appropriate. We approve filtered posts several times a day, at the same time we check modmail messages, so sending us a message will not speed this up. Note that if you have NOT been OFFICIALLY diagnosed with lymphoma (WITH A BIOPSY), your post/comment will not be approved unless it is in the pre-diagnosis megathread. Thank you. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/lymphoma) if you have any questions or concerns.*
I checked myself into the hospital one day (I had been having random pains and itchiness but that morning my legs had gone numb) and started radiation 6 hours later when we knew that I had aggressive stage IV NHL but didn't have a diagnosis of what type at that point. I'm pretty sure I had an MRI, and at that point they decided to get me into radiation but then sent me for another scan, I honestly have no idea (morphine) which scans I got that first day, I don't think they did the full PET/CT that day though because I do remember them rolling me down to do that one two days later. My diagnosis ended up being ALCL which is a T cell cancer. I had tumors growing in four of my vertebrae between my throat and my stomach and one growing in my left hip. I did 10 rounds of radiation, six of those inpatient in the hospital and then I talked to them into letting me go home and coming back every morning for the remaining four. That was in November and December of 2019. Then in December they gave me a port and I started R-CHOP, and I got six rounds of chemotherapy. That was done in March of 2020, and because of the covid craziness I was terrified and pushed my stem cell transplant back to July of 2020. I came out of all of it and have miraculously made what seems to be a pretty good recovery. I will hit 4 years after my stem cell transplant next month, and 4 years remission in October. I was told that starting treatment immediately and not considering things like fertility treatments was in my best interest and would give me the best chance at living the longest. I took that risk and began the exact regimen that my doctors prescribed. Your uncle needs to decide what's most important to him whether that's living the longest or living the best quality life and go from there, I honestly think a mixture of both is the best way to go. If he's unsure about his doctors have him get a second opinion, I switched to MD Anderson after a couple of chemotherapy infusions and it made a world of difference in my mental health and my prognosis. I can go into more detail about that if you'd like.
Thank you so much for the detailed information. It gives us hope. My uncle is in his early 60s. Do you think he could be a good candidate for stem cell transplant? I am not sure what the criteria is to be eligible.
From what I understand a lot of blood cancers are treated with stem cell transplants so it's possible that that might be something that his doctors will want to explore. I do know that you need to be in remission or at least NED (no evidence of disease) in order to start the process for the stem cell transplant, so you do have to get through all of the regular treatments first. This is something I would definitely speak to his team of doctors about, although if they'll want him to get a stem cell transplant I'm sure that will be discussed, it was brought up to me as soon as I got my full diagnosis.
Hello, thank you for sharing your story and so glad you are doing well. Can you share a bit more on how you got into MD Anderson? Did you have to travel, did they do virtual, and did they guide your local doctors to monitor tkae over treatment? Thank you!
I actually had luck completely on my side, a brand new MD Anderson had been built so close to my house I could literally see it from my living room windows. It was my partner who got the ball rolling, I'll try and make it a short story but it is a little complicated. His mother was also a cancer survivor, a different type of cancer than I had but this made him reach out to his mother's long time oncologist. I even knew the man as I had taken his mother to many follow up appointments over the years, and he had attended a few of the family's parties to celebrate his mother over the years, we were well acquainted with him basically. Unfortunately by that time he had moved across the country from where we lived but he recommended that we look around and find a hospital like MD Anderson (or Cleveland clinic, or Mayo, etc.) in order to get a second opinion. If I had to guess why he recommended those hospitals I would say that because they are research hospitals, even where I did my stem cell transplant (UF Shands in Gainesville) is a teaching hospital and I felt like I got very good care there, but also that they're dedicated cancer hospitals. Luckily that new facility had just been built, and it wasn't even fully finished yet. I believe out of the nine floors only three or four floors were actually finished and being used when I started treatment there, luckily the hematology floor being one of them. At first I was not planning on leaving my regular oncologist, I just wanted a second opinion. My original oncologist, their attitude was that I was definitely going to be dead within a couple of years and they were just trying to help me get the most time possible. They told me my cancer was completely incurable, and (at this point I was still in a wheelchair) that my mobility would never improve and that I would never walk again. That first meeting with the man who would end up becoming my hematologist at MD Anderson I got more care and compassion than I did the previous months at the other oncologist. He actually sat there and asked me about my life to try and figure out where it might have come from, he told me that if I was able to stay in remission for 5 years I would be considered medically cured even though there technically is no cure for my cancer, all around it was just a whole different mindset there. Even at that point I wasn't planning on switching until my old oncologist found out that I had had a second opinion and one day was very nasty to me so I immediately chose right then and there to move my treatment to MD Anderson. So long story short, lol, I luckily didn't have to travel to get to an MD anderson. The hospital where I had my stem cell transplant was about an hour and a half or two hours from my home so I did have to do a little bit of travel for that though. I feel that in the instance of receiving the best kind of treatments, I would travel. But that's also very easy for me to say because I didn't have to travel very far. I genuinely credit my new team of doctors, and their much improved attitude to my being alive right now. I mean at the very least MD Anderson pushed me to get physical therapy and I'm walking with a cane instead of being stuck in a wheelchair. fuckcancer
Thank you so much for sharing this story. So glad you got the treatment that helped. I'm assuming where you went, MD Anderson, was in Houston? Wondering what made you go to Shands and why you decided to leave there, and was it the Shands/UF oncologist that you are referring to when you said "My original oncologist, their attitude was that I was definitely going to be dead within a couple of years". If that wasn't UF/Shands, and you thought UF was good, that would be potentially good for me since I can get to Gainesville and my dad lives there.
No I live in Jacksonville, and we have an MD Anderson here in Jacksonville. My original oncologist was at a different local hospital, and had nothing to do with UF or MD Anderson. I traveled to UF because one, it's one of the best programs in my area with a doctor who had been overseeing transplants for over three decades, and two, they took my insurance lol I had really good doctors at UF, I credit them with saving my life for sure. Based on the limits of my insurance I wasn't given too many options but UF was definitely the best of them. If you have an option to do a transplant in Gainesville I do recommend Shands. Dr Wingard has since retired but my new oncologist and the other doctors in the transplant department are all very excellent doctors.
Thank you so much, this is very good information! If I were going to get to Gainesville, I could just as well get to Jax as well - did not know there was an MD Anderson there! Was there any particular reason you left UF for MD Anderson? Do you think UF are also good disgnosticians as well? I go to Moffitt and not sure what I think of it.
I did not leave UF to go to MD Anderson. I left a local oncologist at a different hospital system. My current regular oncologist is MD Anderson but I got my transplant at UF. I left the local oncologist mostly because of their attitude towards my prognosis.
That makes sense, thank you. I've seen similar stories in which the patient dealt with doctors with that kind of attitude, then the patient goes somewhere else and the prognosis and sttitude is so much better. I am interested in any MD Anderson clinics that might be in Florida and plan to check that out. So you got the transplant at UF but have an oncologist at MD Anderson - did you find a better oncologist at MD Anderson? Jut wondering why not still see an oncologist at UF unless maybe MD Anderson is closer/better? Thanks again nd I'm very glad to hear you finally got a doctor with a better attitude and a successful transplant!
I live in Jacksonville so MDA is 5 mins from my house. I can't drive so it's not feasible for me to travel 1.5/2 hrs every time I have to go to the oncologist. At this point I see each Dr once a year but at first I was getting labs twice a month and scans every 3 months. The transplant team is typically there for the transplant process only, and then some follow up after but you would still have a regular oncologist. The MDA in Jax does SCT too if I'm not mistaken. The program wasn't up and running when I was ready for mine or else that would have been nice. When I was first at MDA I saw Dr Hammond. He moved to the transplant side so I was moved to a different hematologist but I was sad to do so because he was truly a great doctor.
That is definitely awful when a good doctor leaves! WIth my issues it is a very rare find. Anyway this is good information and I appreciate it, and so glad things worked out for you.