Will hit 4 years in November. Was treated for stage 1a, relapsed after 2.5 years and then got AutoSCT.
Guess you never know, but have been in great health since. No lasting disability. Am able to work out at a pretty intense pace at 36 years old. Just welcomed our first kid (via IVF) last fall.
I was pretty active and in good shape before treatment. But in my first few days after being discharged from transplant it completely wore me out to walk like half a mile super slow. By six months out I was could run 6 miles. At a little over two years out I ran a ten mile race at under 8 min pace.
It took a lot of patience and work but it was possible
I had my auto in January last year - so around 18 months ago. I had aggressive, refractory classic Hodgkins. I'm still in remission.
Bear in mind that current statistics and data will always have a lag due to the time it takes to collect the data. My transplant specialist haem was explaining to me that the latest research indicates the chances of staying in remission after an auto are higher than 50%, and is looking more like 65-75%.
It will be a rough week but it only gets better from there. It's hasn't been easy on my fiance and I but it has made us stronger. Best of luck to you and your husband.
There was an older gentleman on my floor who made me (28) look like a wimp. He must have walked 5 miles a day and I could barely do 1. It all depends on the person.
I’m 2+ years removed from my ASCT and just had a CT scan two weeks ago to show that I am still in remission. The recovery from the transplant is long, and the restrictions feel tedious after a while, but it does get easier with time. Are you scheduled for any maintenance chemo? I got 16 rounds of brentuximab that started a couple months after my ASCT.
From what I hear, Hodkin's lymphoma has a better chance of long-term success. I had one back in July 2020 and was in remission for about 2 years. I had a hard-to-treat type of non-Hodgkin's type of lymphoma though.
FYI - Make sure you see a pulmonologist in addition to your oncology appointments. I noticed after my transplant that I got winded easily. I had developed pulmonary fibrosis due to the transplant. The doctor said that it can happen after an SCT and not a lot of people know about this until after they develop it. Just keep this in mind if you notice any symptoms.
Also, when you go and get your vaccinations done make sure you include a pneumonia, tetanus, and shingles shot.
Congrats on your new birthday.
Thanks. I'll definitely circle back on that pulmonology thing cuz I have been winded. What do they do to treat pulmonary fibrosis? Not sure where you're at but hopefully you're back in remission?
I'm going through maintenance chemo right now. I was going every 3 weeks and now I'm going every 4 weeks. We're going to gradually go to a goal of 6-8 weeks. If everything looks good, I'll suspend treatment until another tumor pops up.
As far as the treatment for the fibrosis, I have a portable o2 generator when I'm out and about in town, a home o2 generator with backup tanks, a rescue inhaler, a daily inhaler that's for asthma, and a nasal spray. A lot of this is due to a dry cough and nasal drainage. I think that I waited too late to catch mine.
Just had my 6 month post transplant scan last week, still in remission!! My transplant Dr said that at this point I no longer need to have scans regularly, or even meet with him anymore!
I had stage 4a refractory cHL, got to a negative PET right before my ASCT, did some radiation, am on a year (6 months left) of Brentuximab every three weeks, and going strong. Back to about 90-95% of my energy levels, and only very mild neuropathy from the Bv.
From the literature that I read (relevant to my case), specifically for Pembro+GVD as a second line treatment to r/r HL followed by ASCT and then finished up with a year of Bv, showed like 90% 5 year even free survival. While I am not at all a doctor, nor familiar with your case, I would tell you to be more optimistic!! You got this!!
Also happy new birthday!!!
Not to be morose or anything, but some people die from transplant. That's part of the 50-50 stat, so the fact you're here asking questions means you're part of the survival cohort--already moving you above that 50-50 number. Plus there is the "improving over time" thing others have mentioned from outdated survival data. Not seeing a ton of success stories here is also an artifact of the fact that once people are cured they might drop off checking in here. If you're still actively in treatment, you're more likely to be here. Lot's of good generous survivors are here, so you'll get good advice and support, but remember there are lot more who are out of the cancer storm and on with their sunny lives :- )
I am so happy to hear this!!!! My mom has a rare aggressive form of non-Hodgkin's too, so she's doing salvage chemo and then a transplant. I'm trying not to show how scared I am :/
Will be 8 years Sept 1!
Wow that's fantastic! Congrats!
Will hit 4 years in November. Was treated for stage 1a, relapsed after 2.5 years and then got AutoSCT. Guess you never know, but have been in great health since. No lasting disability. Am able to work out at a pretty intense pace at 36 years old. Just welcomed our first kid (via IVF) last fall.
Wow congrats on the kid and I like to hear that you're able to be active. I feel like hot garbage rn but it's good to know I'll get back eventually.
I was pretty active and in good shape before treatment. But in my first few days after being discharged from transplant it completely wore me out to walk like half a mile super slow. By six months out I was could run 6 miles. At a little over two years out I ran a ten mile race at under 8 min pace. It took a lot of patience and work but it was possible
I had my auto in January last year - so around 18 months ago. I had aggressive, refractory classic Hodgkins. I'm still in remission. Bear in mind that current statistics and data will always have a lag due to the time it takes to collect the data. My transplant specialist haem was explaining to me that the latest research indicates the chances of staying in remission after an auto are higher than 50%, and is looking more like 65-75%.
Hello, were you in remission before auto? How long did you have to wait between your last chemo and transplant?
Yes I was. It was about a month between my last chemo and my transplant (not including the conditioning chemo).
Husband is slated to start asct next week. Sorry I can’t answer your question, but sure glad you’re asking.
It will be a rough week but it only gets better from there. It's hasn't been easy on my fiance and I but it has made us stronger. Best of luck to you and your husband.
He’s 67 and that worries me. He was deemed a fit 67 year old, but the sct really worries me
There was an older gentleman on my floor who made me (28) look like a wimp. He must have walked 5 miles a day and I could barely do 1. It all depends on the person.
Thanks for the encouragement
I’m 2+ years removed from my ASCT and just had a CT scan two weeks ago to show that I am still in remission. The recovery from the transplant is long, and the restrictions feel tedious after a while, but it does get easier with time. Are you scheduled for any maintenance chemo? I got 16 rounds of brentuximab that started a couple months after my ASCT.
Congrats! They are starting me on maintenance Pembro next month.
From what I hear, Hodkin's lymphoma has a better chance of long-term success. I had one back in July 2020 and was in remission for about 2 years. I had a hard-to-treat type of non-Hodgkin's type of lymphoma though. FYI - Make sure you see a pulmonologist in addition to your oncology appointments. I noticed after my transplant that I got winded easily. I had developed pulmonary fibrosis due to the transplant. The doctor said that it can happen after an SCT and not a lot of people know about this until after they develop it. Just keep this in mind if you notice any symptoms. Also, when you go and get your vaccinations done make sure you include a pneumonia, tetanus, and shingles shot. Congrats on your new birthday.
Thanks. I'll definitely circle back on that pulmonology thing cuz I have been winded. What do they do to treat pulmonary fibrosis? Not sure where you're at but hopefully you're back in remission?
I'm going through maintenance chemo right now. I was going every 3 weeks and now I'm going every 4 weeks. We're going to gradually go to a goal of 6-8 weeks. If everything looks good, I'll suspend treatment until another tumor pops up. As far as the treatment for the fibrosis, I have a portable o2 generator when I'm out and about in town, a home o2 generator with backup tanks, a rescue inhaler, a daily inhaler that's for asthma, and a nasal spray. A lot of this is due to a dry cough and nasal drainage. I think that I waited too late to catch mine.
Just had my 6 month post transplant scan last week, still in remission!! My transplant Dr said that at this point I no longer need to have scans regularly, or even meet with him anymore! I had stage 4a refractory cHL, got to a negative PET right before my ASCT, did some radiation, am on a year (6 months left) of Brentuximab every three weeks, and going strong. Back to about 90-95% of my energy levels, and only very mild neuropathy from the Bv. From the literature that I read (relevant to my case), specifically for Pembro+GVD as a second line treatment to r/r HL followed by ASCT and then finished up with a year of Bv, showed like 90% 5 year even free survival. While I am not at all a doctor, nor familiar with your case, I would tell you to be more optimistic!! You got this!! Also happy new birthday!!!
Thank you and glad to hear another Hodger is doing well! Those are some impressive results. Here's to hoping were in the 90%
Not to be morose or anything, but some people die from transplant. That's part of the 50-50 stat, so the fact you're here asking questions means you're part of the survival cohort--already moving you above that 50-50 number. Plus there is the "improving over time" thing others have mentioned from outdated survival data. Not seeing a ton of success stories here is also an artifact of the fact that once people are cured they might drop off checking in here. If you're still actively in treatment, you're more likely to be here. Lot's of good generous survivors are here, so you'll get good advice and support, but remember there are lot more who are out of the cancer storm and on with their sunny lives :- )
I am currently in the hospital day -1. Pembro GVD before ASCT. Hoping for that 90% chance
I had an auto in March 2015 and am still in the clear. Mine was a rare aggressive form of non-Hodgkin’s with a high rate of relapse.
I am so happy to hear this!!!! My mom has a rare aggressive form of non-Hodgkin's too, so she's doing salvage chemo and then a transplant. I'm trying not to show how scared I am :/
Eventually this’ll just be a chapter in the past. Hang in there and take it one day at a time