Update on Lymphoma
Instructor
Joined: Aug 2010
Posts: 103
Likes: 0
Well after 8 weeks of intence radiation therapy I'm done!!!!!! Now the nail bitting starts. I have to wait 90 days before my next PSA hopefully it will be 0.01 which is undetectable which means no cancer present. Hey Deb glad to here your in the hands of Sloan that's a Great hospital your in good hands
gnmontagnino, hang in there, I did the radiation/chemo concurrently route for my lung cancer and have to say as easy as the radiation treatments were (you just lay there) once the effects kick in they are the hardest to deal with. My esphogus was so enflamed it hurt to eat jello, it was too solid, ice cream and pudding were much easier but still tough to get down. They even gave me my pain medication oxycodone in liquid form (what I would give for a bottle of that now. j/k) 
I also got periocariditus sp? from it. Hopefully you will fair a lot better than me, they did say that I got every side effect and that I was not the norm. That said, it was all worth it and is all a distant memory now. I know, you were probably saying to yourself for me to get to the point. Well that is it, it will soon be a distant memory and you will be glad it is over and are cancer free. They put me on anti depressants despite me thinking I did not need or want them but I have to say they were god sent. IF you are not already on them ask your doctor for a script, they REALLY help with your mental outlook while you are going on treatments. I remember sitting in the HUP Radiation ward every day and it was very depressing seeing the other patients, especially when they would bring the babies in from CHOP for the treatments. It would bring tears to my eyes. Well, I am not going to tell you any stories because I do not want to depress you any more. I will tell you they gave me a 5% 5 year survival rate since I was stage 3b lung cancer and I have been cancer free for 12 years now. Like I told Deb, somebody has to be in that percentage of survivors and it might as well be us. They are making great strides in the cancer treatment arena and it is no longer a death sentence. 
Deb, I am jealous, I would so love to be going to Florida to escape this cold weather. Hopefully some day. You can get some REALLY great deals down there right now on real estate since the market down there is so bad, much worst than up here. You should make out good in that department. Have a great time and enjoy the weather. I hope your mother feels better.
I also got periocariditus sp? from it. Hopefully you will fair a lot better than me, they did say that I got every side effect and that I was not the norm. That said, it was all worth it and is all a distant memory now. I know, you were probably saying to yourself for me to get to the point. Well that is it, it will soon be a distant memory and you will be glad it is over and are cancer free. They put me on anti depressants despite me thinking I did not need or want them but I have to say they were god sent. IF you are not already on them ask your doctor for a script, they REALLY help with your mental outlook while you are going on treatments. I remember sitting in the HUP Radiation ward every day and it was very depressing seeing the other patients, especially when they would bring the babies in from CHOP for the treatments. It would bring tears to my eyes. Well, I am not going to tell you any stories because I do not want to depress you any more. I will tell you they gave me a 5% 5 year survival rate since I was stage 3b lung cancer and I have been cancer free for 12 years now. Like I told Deb, somebody has to be in that percentage of survivors and it might as well be us. They are making great strides in the cancer treatment arena and it is no longer a death sentence. Deb, I am jealous, I would so love to be going to Florida to escape this cold weather. Hopefully some day. You can get some REALLY great deals down there right now on real estate since the market down there is so bad, much worst than up here. You should make out good in that department. Have a great time and enjoy the weather. I hope your mother feels better.
Thread Starter
Race Director
Joined: Dec 2005
Posts: 12,078
Likes: 2
From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
Monte good luck!!! Keep your chin up and know that I'll be praying for you too!!!
On to the update!
So back to MSKCC in Manhattan I went on Monday to get the results of the PET scan. Although my scan in December was completely clean, this one was a little weird.....it lit up all over, but NOT in the lymph nodes or other organs - it was primarily showing the skin lymphoma. So the doctor told me to go ahead with the new medication, which I started yesterday at a very low dose that will likely get increased in two weeks.
He sent me to the MSKCC in Commack, LI to see another doctor that does radiation. I have one rogue lesion on my face that will need pinpoint electron radiation to deal with. Any other option would leave a bad scar and I'd rather not mark up my ugly mug if possible. So for the next four weeks, I have to go five days a week to the radiation center for a very low dose therapy that does not penetrate beyond the surface of the skin so there will be none of the "usual" radiation side effects. The worst thing I will experience is a minor skin irritation like a sunburn. I suppose I can deal with that.
I never thought I'd be so happy to hear "you have primary cutaneous t-cell anaplastic large cell lymphoma"
But the fact that it is not systemic is the best news of all.
Its not over by a long shot - I will be going for repeated blood tests and dose adjustments over the next few months with possible changes in treatment to deal with this, but if I'm lucky the first treatment option will work!
After the four weeks of radiation are over, I will be going back to Winthrop to have the port removed
On to the update!
So back to MSKCC in Manhattan I went on Monday to get the results of the PET scan. Although my scan in December was completely clean, this one was a little weird.....it lit up all over, but NOT in the lymph nodes or other organs - it was primarily showing the skin lymphoma. So the doctor told me to go ahead with the new medication, which I started yesterday at a very low dose that will likely get increased in two weeks.
He sent me to the MSKCC in Commack, LI to see another doctor that does radiation. I have one rogue lesion on my face that will need pinpoint electron radiation to deal with. Any other option would leave a bad scar and I'd rather not mark up my ugly mug if possible. So for the next four weeks, I have to go five days a week to the radiation center for a very low dose therapy that does not penetrate beyond the surface of the skin so there will be none of the "usual" radiation side effects. The worst thing I will experience is a minor skin irritation like a sunburn. I suppose I can deal with that.
I never thought I'd be so happy to hear "you have primary cutaneous t-cell anaplastic large cell lymphoma"
But the fact that it is not systemic is the best news of all.Its not over by a long shot - I will be going for repeated blood tests and dose adjustments over the next few months with possible changes in treatment to deal with this, but if I'm lucky the first treatment option will work!
After the four weeks of radiation are over, I will be going back to Winthrop to have the port removed
Le Mans Master<br><img src="/forums/images/ranks/5k-6k.gif" border="0">
Joined: May 2007
Posts: 5,404
Likes: 1
St. Jude Donor '08-'09
Good for you Deb! That's definitely great news. Glad to hear you can get the low dose radiation too. Saw a thing on TV about how that works. It's pretty amazing technology.
Race Director
Joined: Aug 2004
Posts: 14,639
Likes: 39
From: Winston-Salem North Carolina
St. Jude Donor '08-'09
Way to stay positive Deb. I know that you know, that I know, that you know, how important that you know that I know that you know staying positive and strong is a big part of the battle. I can't help with the diagnosis, I can't give advice on the direction of treatment, but I can try to keep you in a good mood, even if I have to kick(spank) your butt. And I know that you know that I know how we'd both like that.
Le Mans Master
Joined: Aug 2004
Posts: 9,420
Likes: 8
From: Southern New Jersey, The wet part at the bottom
St. Jude Donor '08-'09-'10
Great news Deb! 
You've beaten this life threatening illness and are well along to recovery and back to yourself prior to the experience. See ya on the 19th. 
You've beaten this life threatening illness and are well along to recovery and back to yourself prior to the experience. See ya on the 19th.
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Verdad Gallardo
Safety Car
Joined: Jul 2006
Posts: 4,325
Likes: 0
From: You can't get there from here NJ
St. Jude Donor '08-'09
Way to stay positive Deb. I know that you know, that I know, that you know, how important that you know that I know that you know staying positive and strong is a big part of the battle. I can't help with the diagnosis, I can't give advice on the direction of treatment, but I can try to keep you in a good mood, even if I have to kick(spank) your butt. And I know that you know that I know how we'd both like that. Whatever you said George.
Melting Slicks
Joined: Dec 2004
Posts: 2,482
Likes: 0
From: *MIDDLETOWN NY* "I thought I was an OLD-GUY, till I met Charlie"
Monte good luck!!! Keep your chin up and know that I'll be praying for you too!!!
On to the update!
So back to MSKCC in Manhattan I went on Monday to get the results of the PET scan. Although my scan in December was completely clean, this one was a little weird.....it lit up all over, but NOT in the lymph nodes or other organs - it was primarily showing the skin lymphoma. So the doctor told me to go ahead with the new medication, which I started yesterday at a very low dose that will likely get increased in two weeks.
He sent me to the MSKCC in Commack, LI to see another doctor that does radiation. I have one rogue lesion on my face that will need pinpoint electron radiation to deal with. Any other option would leave a bad scar and I'd rather not mark up my ugly mug if possible. So for the next four weeks, I have to go five days a week to the radiation center for a very low dose therapy that does not penetrate beyond the surface of the skin so there will be none of the "usual" radiation side effects. The worst thing I will experience is a minor skin irritation like a sunburn. I suppose I can deal with that.
I never thought I'd be so happy to hear "you have primary cutaneous t-cell anaplastic large cell lymphoma" But the fact that it is not systemic is the best news of all.
Its not over by a long shot - I will be going for repeated blood tests and dose adjustments over the next few months with possible changes in treatment to deal with this, but if I'm lucky the first treatment option will work!
After the four weeks of radiation are over, I will be going back to Winthrop to have the port removed
On to the update!
So back to MSKCC in Manhattan I went on Monday to get the results of the PET scan. Although my scan in December was completely clean, this one was a little weird.....it lit up all over, but NOT in the lymph nodes or other organs - it was primarily showing the skin lymphoma. So the doctor told me to go ahead with the new medication, which I started yesterday at a very low dose that will likely get increased in two weeks.
He sent me to the MSKCC in Commack, LI to see another doctor that does radiation. I have one rogue lesion on my face that will need pinpoint electron radiation to deal with. Any other option would leave a bad scar and I'd rather not mark up my ugly mug if possible. So for the next four weeks, I have to go five days a week to the radiation center for a very low dose therapy that does not penetrate beyond the surface of the skin so there will be none of the "usual" radiation side effects. The worst thing I will experience is a minor skin irritation like a sunburn. I suppose I can deal with that.
I never thought I'd be so happy to hear "you have primary cutaneous t-cell anaplastic large cell lymphoma"
But the fact that it is not systemic is the best news of all.Its not over by a long shot - I will be going for repeated blood tests and dose adjustments over the next few months with possible changes in treatment to deal with this, but if I'm lucky the first treatment option will work!
After the four weeks of radiation are over, I will be going back to Winthrop to have the port removed
Last edited by OLD-GUY; Feb 10, 2011 at 07:38 PM.
Le Mans Master
Joined: Apr 2002
Posts: 6,927
Likes: 3
From: Glendale NY
St. Jude Donor '08-'09-'10-'11-'12-'13-'14-'15-'16-'17-'18- '19
On to the update!
So Its not over by a long shot - I will be going for repeated blood tests and dose adjustments over the next few months with possible changes in treatment to deal with this, but if I'm lucky the first treatment option will work!
After the four weeks of radiation are over, I will be going back to Winthrop to have the port removed
So Its not over by a long shot - I will be going for repeated blood tests and dose adjustments over the next few months with possible changes in treatment to deal with this, but if I'm lucky the first treatment option will work!
After the four weeks of radiation are over, I will be going back to Winthrop to have the port removed
........It's nice to hear good news, especially from you.
love ya
that is all
Race Director
Joined: Mar 2003
Posts: 11,624
Likes: 18
From: Dover MA
St. Jude Donor '03-'04-'05-'06-'07-'08-'09-'10-'11-'12-'13-'14-'15-'16-'17-'18-'19
Wow, sounds like good news. What are you going to do with your medical degree after this - you know, all the new stuff you learned against your will?
Thread Starter
Race Director
Joined: Dec 2005
Posts: 12,078
Likes: 2
From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
Thanks everyone!
Linda, you're a crazy girl. You really took me by surprise yesterday
PB, it really is sickening the things I've learned and am STILL learning. Those people took enough of my blood to find a cure for this damn disease
So today is day 2 of the electron radiation. Talk about a bad horror movie - they put you on this table and then place this Hannibal Lecter mask over your face and clamp it down to the table I can only describe it as extremely unnerving - imagine having someone stronger than you put a pillow over your face and hold it down tight......yup that's what it feels like. And I get to do this every day for four weeks 
Been on the new meds for a little over a week now. The impatient part of me is desperate to see some results but I can't honestly say that I have. I don't think I'm seeing so many new marks, but perhaps that's wishful thinking......I don't know. Next week the dose will be doubled so hopefully I'll see a "decrease" then. I'm told it could take a few weeks to a few months. We'll see......in the meantime, staying as positive and happy as I can
Linda, you're a crazy girl. You really took me by surprise yesterday
PB, it really is sickening the things I've learned and am STILL learning. Those people took enough of my blood to find a cure for this damn disease
So today is day 2 of the electron radiation. Talk about a bad horror movie - they put you on this table and then place this Hannibal Lecter mask over your face and clamp it down to the table
I can only describe it as extremely unnerving - imagine having someone stronger than you put a pillow over your face and hold it down tight......yup that's what it feels like. And I get to do this every day for four weeks Been on the new meds for a little over a week now. The impatient part of me is desperate to see some results but I can't honestly say that I have. I don't think I'm seeing so many new marks, but perhaps that's wishful thinking......I don't know. Next week the dose will be doubled so hopefully I'll see a "decrease" then. I'm told it could take a few weeks to a few months. We'll see......in the meantime, staying as positive and happy as I can
Thread Starter
Race Director
Joined: Dec 2005
Posts: 12,078
Likes: 2
From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
They told me this morning roughly 10 days before I start to see results. Two days down and 18 more to go
Le Mans Master
Joined: Aug 2004
Posts: 9,420
Likes: 8
From: Southern New Jersey, The wet part at the bottom
St. Jude Donor '08-'09-'10
Thanks everyone!
Linda, you're a crazy girl. You really took me by surprise yesterday
PB, it really is sickening the things I've learned and am STILL learning. Those people took enough of my blood to find a cure for this damn disease
So today is day 2 of the electron radiation. Talk about a bad horror movie - they put you on this table and then place this Hannibal Lecter mask over your face and clamp it down to the table I can only describe it as extremely unnerving - imagine having someone stronger than you put a pillow over your face and hold it down tight......yup that's what it feels like. And I get to do this every day for four weeks
Been on the new meds for a little over a week now. The impatient part of me is desperate to see some results but I can't honestly say that I have. I don't think I'm seeing so many new marks, but perhaps that's wishful thinking......I don't know. Next week the dose will be doubled so hopefully I'll see a "decrease" then. I'm told it could take a few weeks to a few months. We'll see......in the meantime, staying as positive and happy as I can
Linda, you're a crazy girl. You really took me by surprise yesterday
PB, it really is sickening the things I've learned and am STILL learning. Those people took enough of my blood to find a cure for this damn disease
So today is day 2 of the electron radiation. Talk about a bad horror movie - they put you on this table and then place this Hannibal Lecter mask over your face and clamp it down to the table
I can only describe it as extremely unnerving - imagine having someone stronger than you put a pillow over your face and hold it down tight......yup that's what it feels like. And I get to do this every day for four weeks Been on the new meds for a little over a week now. The impatient part of me is desperate to see some results but I can't honestly say that I have. I don't think I'm seeing so many new marks, but perhaps that's wishful thinking......I don't know. Next week the dose will be doubled so hopefully I'll see a "decrease" then. I'm told it could take a few weeks to a few months. We'll see......in the meantime, staying as positive and happy as I can
Thread Starter
Race Director
Joined: Dec 2005
Posts: 12,078
Likes: 2
From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
About three weeks about something in me just "clicked" and no matter what the days bring, I've faced each one positive, smiling and in great spirits. My mood has done a 180 and I'm really beginning to feel like myself again! Only thing left now is to LOOK like myself again - and I'm working on that!!
How are you feeling buddy?
Instructor
Joined: Aug 2010
Posts: 103
Likes: 0
Ugh, is that like the worst torture device or what?? They cut an opening for my eyes so it eases the anxiety a little but that sucker is still tight!!! Valium is probably the only thing I haven't tried - I'll bet they would work! I gotta have a talk with my doc about that.
Hey Monte,
About three weeks about something in me just "clicked" and no matter what the days bring, I've faced each one positive, smiling and in great spirits. My mood has done a 180 and I'm really beginning to feel like myself again! Only thing left now is to LOOK like myself again - and I'm working on that!!
How are you feeling buddy?
Hey Monte,
About three weeks about something in me just "clicked" and no matter what the days bring, I've faced each one positive, smiling and in great spirits. My mood has done a 180 and I'm really beginning to feel like myself again! Only thing left now is to LOOK like myself again - and I'm working on that!!
How are you feeling buddy?
Deb feeling great April 26th is the day i find out i have beat this and move on finally. This has been a tough 17 months I KNOW YOU CAN RELATE!!!!!anyway i look forward to hanging out with you at the next Vette Doctors BBQ. Hint maybe you can start giving Carmen a little nudge to start planning now
. I am sure i will be getting a chewing out from Carmen for making that suggestion See you soonMontee
Last edited by gnmontagnino; Feb 19, 2011 at 08:08 AM.