A little question about where your NHL was found, what part of your body?

Go_go_Gi_gi

COBRA666 said:

Forgot 1
Susan,
You forgot to add in the HEAT we've had all summer. I am in NC. John

So right about the
So right about the heat---and a/c now off due to Irene passing through! Those, the little things in life! Susan

violinist1

your question about location of first lymphoma
Dear bluerose,
I have often wondered whethwr there is a commom next placefor my kind of lymphoma, follicular nhl, and i too found it all of a sudden one day in my left groin, one enlarged node, overnigjt. I have googled the expression blow up lymphoma and coukdn't find it. My doctors haven't used it to me. I currently spkit my care between 2 oncologists, one at Yale, and one in Stamford where i live,. I like themboth very much. I am going to them both because i can, and it is a great relief to me that they agreed to split me, meaning that every single thing i do i check with the yale doctor first or i don't do it. I guess i view him as in charge of me but i like my stamford doctor, she is local, and i think it s important to have a local do yoi really like, even if you feel the need to double check everything the wY i do. I wonder, do you have any sense of likely places or is it pretty impossible to forecast it? I plan to stay free o it, but i can't help but have a lot of anxiety about where it might appear. There is no way to live like that though, so i have to try to put my mind on things that i enjoy, in order to save my sanity. My doctor says that thinking these thoughts are typical of ptsd butthat it will gettter.

Go_go_Gi_gi

violinist1 said:

your question about location of first lymphoma
Dear bluerose,
I have often wondered whethwr there is a commom next placefor my kind of lymphoma, follicular nhl, and i too found it all of a sudden one day in my left groin, one enlarged node, overnigjt. I have googled the expression blow up lymphoma and coukdn't find it. My doctors haven't used it to me. I currently spkit my care between 2 oncologists, one at Yale, and one in Stamford where i live,. I like themboth very much. I am going to them both because i can, and it is a great relief to me that they agreed to split me, meaning that every single thing i do i check with the yale doctor first or i don't do it. I guess i view him as in charge of me but i like my stamford doctor, she is local, and i think it s important to have a local do yoi really like, even if you feel the need to double check everything the wY i do. I wonder, do you have any sense of likely places or is it pretty impossible to forecast it? I plan to stay free o it, but i can't help but have a lot of anxiety about where it might appear. There is no way to live like that though, so i have to try to put my mind on things that i enjoy, in order to save my sanity. My doctor says that thinking these thoughts are typical of ptsd butthat it will gettter.

Dear Violinist1-
In question
Dear Violinist1-
In question and answer session with my Oncologist today--one of the things he said was the "reappearing site is likely to be in the same area as the original, though the "NHL-cells" might decide to "pack up and go elsewhere" -- sometimes after many years, or not at all--

Susan

bluerose

violinist1 said:

your question about location of first lymphoma
Dear bluerose,
I have often wondered whethwr there is a commom next placefor my kind of lymphoma, follicular nhl, and i too found it all of a sudden one day in my left groin, one enlarged node, overnigjt. I have googled the expression blow up lymphoma and coukdn't find it. My doctors haven't used it to me. I currently spkit my care between 2 oncologists, one at Yale, and one in Stamford where i live,. I like themboth very much. I am going to them both because i can, and it is a great relief to me that they agreed to split me, meaning that every single thing i do i check with the yale doctor first or i don't do it. I guess i view him as in charge of me but i like my stamford doctor, she is local, and i think it s important to have a local do yoi really like, even if you feel the need to double check everything the wY i do. I wonder, do you have any sense of likely places or is it pretty impossible to forecast it? I plan to stay free o it, but i can't help but have a lot of anxiety about where it might appear. There is no way to live like that though, so i have to try to put my mind on things that i enjoy, in order to save my sanity. My doctor says that thinking these thoughts are typical of ptsd butthat it will gettter.

Hi again Violinist
I think getting a second opinion and even having a second oncologist throughout is a great idea. This is a big decision, some of the treatments, and of course you want to make sure you are doing the best for yourself. You are very fortunate that 2 doctors at different hospitals agreed to share you. Interesting.

You have to have faith in your doctors, it gives you peace - well as much as you can have through the cancer journey I mean. I think you are doing the absolute best you can do for yourself.

As far as the next location for any recurrances that is impossible to know. I'm not even going to share where my first and last recurrance was because that may make you more sensitive to that area in your own body and first of all YOU MAY HAVE NO RECURRANCE anyway and even if you did it would possibly be somewhere else.

You have to remember one thing EVERYONE IS DIFFERENT as far as cancer is concerned. You can read through these boards and get a 'sense' of what others have gone through and what questions to maybe ask your doctor based on what you have read on the boards and elsewhere but remember - everyone is different. I totally believe that in 'some' cases your mind can play a great part in recovery or illness so, in my opinion, you need to do exactly what you said and that is to get your mind off of recurrance and on to more constructive things to do. Are you a violinist in fact? Music is such a healing thing I think so that in itself would be a great place to focus. I always turn on music to lift my spirits and sure wish I could play an instrument.

The term 'blow up lymphoma' I think was just coined by some doctors to just describe how some lymphomas just appear out of nowhere suddently, it isn't a kind of lymphoma - just their way of saying that it just poof is there all of a sudden - to the eye that is. Obviously it has been growing wherever for swhile before you see it sometimes.

You are not alone in worrying about a recurrance at all, most do to some extent or another, but dwelling on that really is pointless when you think about it. There are many many things to 'worry about' in life but who wants to go through life not seeing the more positive side to life because we do have the choice. It would be tragic to think of someone who is going through life after cancer doing nothing but worrying about it never coming back then living for many many years and never having it come back but they have ruined their lives inspite of the cure through worrying alone. Right? Right.
It is a worry, no doubt about it, but try and put it on a shelf and try to focus on what is good around you.

Keep writing, it's good for you too.

Hugs and blessings,

Bluerose

MacGrandma

Diagnosis
I was mis-diagnosed for nearly a year. They thought I had Chostrochondritis and my chest inflammation was now in my head, stress due to having 4 children and being overseas in Germany with my husband in the Army. The chest busted through with an what looked like a hard marble under the skin that then they biopsied turned red and soft.. they thought it was a cyst and refused to biopsy.. it broke ribs was a grapefruit also in around my trachea and heart valves.. I barely made it out of Germany.. medivac'd to the States to Letterman Army Medical Center in San Francisco.. Now they have found it was through my whole chest, under both arms necrotic tissue and new on my neck... My chest was full pigeon breasted before starting Chemo from the cancer. I am a lucky now 26 year survivor!!

catwink22

MacGrandma said:

Diagnosis
I was mis-diagnosed for nearly a year. They thought I had Chostrochondritis and my chest inflammation was now in my head, stress due to having 4 children and being overseas in Germany with my husband in the Army. The chest busted through with an what looked like a hard marble under the skin that then they biopsied turned red and soft.. they thought it was a cyst and refused to biopsy.. it broke ribs was a grapefruit also in around my trachea and heart valves.. I barely made it out of Germany.. medivac'd to the States to Letterman Army Medical Center in San Francisco.. Now they have found it was through my whole chest, under both arms necrotic tissue and new on my neck... My chest was full pigeon breasted before starting Chemo from the cancer. I am a lucky now 26 year survivor!!

You are all GREAT HOPE!
I hope you know how important you survivors are to us! There is no greater hope than to hear of someone beating the odds and going forward with their lives in such a positive way. Thank you for that hope! This journey can become such a dark road and you are the SUN lighting the way. I know I sound corny, but there are times when I think "This just isn't ever going away" and I can come here and see that it can.
I found a lump under my left arm (I just realized I've been thinking it was my right for the longest time and I didn't even have chemo so I can't blame it on that!) when I was in the mirror putting my hair up. When I had my PET scan my largest node was in my groin, but I never felt it. Does sound like it might be a common place.
And Bluerose, thank you for answering each and every post under this topic that is so thoughtful.

JoanieP

catwink22 said:

You are all GREAT HOPE!
I hope you know how important you survivors are to us! There is no greater hope than to hear of someone beating the odds and going forward with their lives in such a positive way. Thank you for that hope! This journey can become such a dark road and you are the SUN lighting the way. I know I sound corny, but there are times when I think "This just isn't ever going away" and I can come here and see that it can.
I found a lump under my left arm (I just realized I've been thinking it was my right for the longest time and I didn't even have chemo so I can't blame it on that!) when I was in the mirror putting my hair up. When I had my PET scan my largest node was in my groin, but I never felt it. Does sound like it might be a common place.
And Bluerose, thank you for answering each and every post under this topic that is so thoughtful.

Hi Catwink
Bluerose is really an inspiration. I appreciate how she answered everyone too. I often wish we could all meet somewhere and talk. I feel like we understand each other as no one else really does. Hugs Joanie

bluerose

MacGrandma said:

Diagnosis
I was mis-diagnosed for nearly a year. They thought I had Chostrochondritis and my chest inflammation was now in my head, stress due to having 4 children and being overseas in Germany with my husband in the Army. The chest busted through with an what looked like a hard marble under the skin that then they biopsied turned red and soft.. they thought it was a cyst and refused to biopsy.. it broke ribs was a grapefruit also in around my trachea and heart valves.. I barely made it out of Germany.. medivac'd to the States to Letterman Army Medical Center in San Francisco.. Now they have found it was through my whole chest, under both arms necrotic tissue and new on my neck... My chest was full pigeon breasted before starting Chemo from the cancer. I am a lucky now 26 year survivor!!

Wow Grandma
What a trauma you have been through. I am so happy to see another long term survivor on the site. It gives everyone else hope that cancer in fact can be beaten. Thanks for your reply.

All the best,

Bluerose

bluerose

catwink22 said:

You are all GREAT HOPE!
I hope you know how important you survivors are to us! There is no greater hope than to hear of someone beating the odds and going forward with their lives in such a positive way. Thank you for that hope! This journey can become such a dark road and you are the SUN lighting the way. I know I sound corny, but there are times when I think "This just isn't ever going away" and I can come here and see that it can.
I found a lump under my left arm (I just realized I've been thinking it was my right for the longest time and I didn't even have chemo so I can't blame it on that!) when I was in the mirror putting my hair up. When I had my PET scan my largest node was in my groin, but I never felt it. Does sound like it might be a common place.
And Bluerose, thank you for answering each and every post under this topic that is so thoughtful.

Hi Catwink
I find it hard sometimes to answer some of the replies as I post under other headings on this site too but I try to get back to those I start talking to and who reply to my postings. I learn alot from each of you and that's the beauty of this site, we all learn from each other's experience and feel validated in experiences we all share that we have in common. It's a wonderful site and place to connect with those who have walked in our shoes.

All the best and for your kind words.

Blessings,

Bluerose

violinist1

Go_go_Gi_gi said:

Dear Violinist1-
In question
Dear Violinist1-
In question and answer session with my Oncologist today--one of the things he said was the "reappearing site is likely to be in the same area as the original, though the "NHL-cells" might decide to "pack up and go elsewhere" -- sometimes after many years, or not at all--

Susan

hi gigi
If it came back in the same place , and i already had radiation there, can't have it there again, what next? Different plan fot that. I'll plan on not having it back.

anag21

Initial Diagnosis/Hard Time Emotionally
My initial diagnosis was found in my pancreas after about a month of pain and getting very jaundiced. I have NK lymphoma which as I understand is a pretty rare condition. I am currently undergoing my second cycle of the SMILE treatment and after the first cycle I still was very upbeat and found it a lot easier to cope. Lately I have been having a much harder time as I am only 20 and have pretty much had to put my life on hold. I was wondering if you had any advice on what to do to feel better and lift my spirits some.

bluerose

anag21 said:

Initial Diagnosis/Hard Time Emotionally
My initial diagnosis was found in my pancreas after about a month of pain and getting very jaundiced. I have NK lymphoma which as I understand is a pretty rare condition. I am currently undergoing my second cycle of the SMILE treatment and after the first cycle I still was very upbeat and found it a lot easier to cope. Lately I have been having a much harder time as I am only 20 and have pretty much had to put my life on hold. I was wondering if you had any advice on what to do to feel better and lift my spirits some.

Hello Anag
First of all you have done a good thing for yourself by coming to this site. There are alot of very caring and knowledgeable people on this site who have all been where you are at one time or another and as you will find out that is valuable. People who are around you, family members and friends will no doubt support and care for you but only those who have experienced what you are going through can connect with you on your emotions and issues dealing with the cancer itself so do visit here often and comment with any questions you might have, someone will respond.

In answer to your request for advice on what to do to feel better and lift your spirits I guess I can start by saying that I am a 25 year survivor of NHL. If I can make it that long with the treatments they had 25 years ago then you have a great chance of beating this thing too, with all of the new treatments and meds that they have today. I had very little support back then but now with the internet and sites like this a patient has alot of true support and you will find alot of information here that you can use. Just some advice though. Remember that every person is different even if they have the same cancer and the same treatments so read what people have experienced but know that their experiences won't necessarily be yours. When it comes to chemo and rads people can respond quite differently depending on all kinds of factors.

You are young and I will assume healthy and that will go a long way in helping you beat this thing. Cancer CAN BE BEATEN today, I am living proof and I am not alone. You will meet many on this site, long term survivors who have beaten it and you can too. No one is going to say it will be easy but you will get through.

I was twice your age when I was diagnosed and I have done it. Chemo isn't fun and it took a long time for me to recover but that's because I had a bone marrow transplant and they aren't like they were back then, now.

Trying to keep your spirits up by doing the things you loved to do before diagnosis, maybe in more moderation or a little differently than you are used to in the beginning perhaps (more gently if need be) is one of the best ways to get through. If you are into sports for instance but you aren't well enough to play then maybe see if you can help to coach if you are up to it or if you are stuck in bed maybe start a sports memorabilia collection that doesn't take as much energy. Step by step you will get back to doing the things you love. That was just an example, using sports, to illustrate what I meant. People will tell you to try to be positive and that's important but it's perfectly okay to cry when you want to or just feel lousy for a day or two or three. You have the right so don't feel weak if you can't function as you used to. Your body is or has taken a hard hit from treatments and it takes time for it to come back. You will be very tired, rest, listen to your body. Read if you can do nothing else or watch tv, video games - it's your time to care for yourself too and listen to your body.

I know right now all you see are doctors ahead of you and treatments and feeling rotten and I get that, I did too, but just one foot in front of the other, day by day, take it one step at a time and you will be fine. What goals had you set for yourself in the future? Don't forget them and try to do something to further your steps forward in reaching those goals if it's only reading about the area in life you are most interested in while your body mends.

I don't know if you are a spiritual person or not but I hope you are because I know that for me that's what got me through many difficult times during my treatments and recovery.

YOU CAN DO THIS. Now go right ahead and kick it's, um, ---, well kick it - you get the drift. lol.

All the best.

Blessings,

Bluerose

Go_go_Gi_gi

bluerose said:

Hello Anag
First of all you have done a good thing for yourself by coming to this site. There are alot of very caring and knowledgeable people on this site who have all been where you are at one time or another and as you will find out that is valuable. People who are around you, family members and friends will no doubt support and care for you but only those who have experienced what you are going through can connect with you on your emotions and issues dealing with the cancer itself so do visit here often and comment with any questions you might have, someone will respond.

In answer to your request for advice on what to do to feel better and lift your spirits I guess I can start by saying that I am a 25 year survivor of NHL. If I can make it that long with the treatments they had 25 years ago then you have a great chance of beating this thing too, with all of the new treatments and meds that they have today. I had very little support back then but now with the internet and sites like this a patient has alot of true support and you will find alot of information here that you can use. Just some advice though. Remember that every person is different even if they have the same cancer and the same treatments so read what people have experienced but know that their experiences won't necessarily be yours. When it comes to chemo and rads people can respond quite differently depending on all kinds of factors.

You are young and I will assume healthy and that will go a long way in helping you beat this thing. Cancer CAN BE BEATEN today, I am living proof and I am not alone. You will meet many on this site, long term survivors who have beaten it and you can too. No one is going to say it will be easy but you will get through.

I was twice your age when I was diagnosed and I have done it. Chemo isn't fun and it took a long time for me to recover but that's because I had a bone marrow transplant and they aren't like they were back then, now.

Trying to keep your spirits up by doing the things you loved to do before diagnosis, maybe in more moderation or a little differently than you are used to in the beginning perhaps (more gently if need be) is one of the best ways to get through. If you are into sports for instance but you aren't well enough to play then maybe see if you can help to coach if you are up to it or if you are stuck in bed maybe start a sports memorabilia collection that doesn't take as much energy. Step by step you will get back to doing the things you love. That was just an example, using sports, to illustrate what I meant. People will tell you to try to be positive and that's important but it's perfectly okay to cry when you want to or just feel lousy for a day or two or three. You have the right so don't feel weak if you can't function as you used to. Your body is or has taken a hard hit from treatments and it takes time for it to come back. You will be very tired, rest, listen to your body. Read if you can do nothing else or watch tv, video games - it's your time to care for yourself too and listen to your body.

I know right now all you see are doctors ahead of you and treatments and feeling rotten and I get that, I did too, but just one foot in front of the other, day by day, take it one step at a time and you will be fine. What goals had you set for yourself in the future? Don't forget them and try to do something to further your steps forward in reaching those goals if it's only reading about the area in life you are most interested in while your body mends.

I don't know if you are a spiritual person or not but I hope you are because I know that for me that's what got me through many difficult times during my treatments and recovery.

YOU CAN DO THIS. Now go right ahead and kick it's, um, ---, well kick it - you get the drift. lol.

All the best.

Blessings,

Bluerose

Thanks Bluerose and everyone else!!
You are all important to me--your experiences, thoughts, struggles, etc. Thank you

This site is a great site--I agree with you Bluerose re: spirituality helping me through.
I believe in the power of prayer and positive thinking---praise for the good things we have, and the strong potential to regain our health---
Information and sharing from those of you who have had success is a boon and strength--also, sharing the difficulties provides freedom for us "newbies" to vent, cry, experience a wide range of conflicting emotions--without guilt---

I have hope!!!

Thank you all--susan

anag21

bluerose said:

Hello Anag
First of all you have done a good thing for yourself by coming to this site. There are alot of very caring and knowledgeable people on this site who have all been where you are at one time or another and as you will find out that is valuable. People who are around you, family members and friends will no doubt support and care for you but only those who have experienced what you are going through can connect with you on your emotions and issues dealing with the cancer itself so do visit here often and comment with any questions you might have, someone will respond.

In answer to your request for advice on what to do to feel better and lift your spirits I guess I can start by saying that I am a 25 year survivor of NHL. If I can make it that long with the treatments they had 25 years ago then you have a great chance of beating this thing too, with all of the new treatments and meds that they have today. I had very little support back then but now with the internet and sites like this a patient has alot of true support and you will find alot of information here that you can use. Just some advice though. Remember that every person is different even if they have the same cancer and the same treatments so read what people have experienced but know that their experiences won't necessarily be yours. When it comes to chemo and rads people can respond quite differently depending on all kinds of factors.

You are young and I will assume healthy and that will go a long way in helping you beat this thing. Cancer CAN BE BEATEN today, I am living proof and I am not alone. You will meet many on this site, long term survivors who have beaten it and you can too. No one is going to say it will be easy but you will get through.

I was twice your age when I was diagnosed and I have done it. Chemo isn't fun and it took a long time for me to recover but that's because I had a bone marrow transplant and they aren't like they were back then, now.

Trying to keep your spirits up by doing the things you loved to do before diagnosis, maybe in more moderation or a little differently than you are used to in the beginning perhaps (more gently if need be) is one of the best ways to get through. If you are into sports for instance but you aren't well enough to play then maybe see if you can help to coach if you are up to it or if you are stuck in bed maybe start a sports memorabilia collection that doesn't take as much energy. Step by step you will get back to doing the things you love. That was just an example, using sports, to illustrate what I meant. People will tell you to try to be positive and that's important but it's perfectly okay to cry when you want to or just feel lousy for a day or two or three. You have the right so don't feel weak if you can't function as you used to. Your body is or has taken a hard hit from treatments and it takes time for it to come back. You will be very tired, rest, listen to your body. Read if you can do nothing else or watch tv, video games - it's your time to care for yourself too and listen to your body.

I know right now all you see are doctors ahead of you and treatments and feeling rotten and I get that, I did too, but just one foot in front of the other, day by day, take it one step at a time and you will be fine. What goals had you set for yourself in the future? Don't forget them and try to do something to further your steps forward in reaching those goals if it's only reading about the area in life you are most interested in while your body mends.

I don't know if you are a spiritual person or not but I hope you are because I know that for me that's what got me through many difficult times during my treatments and recovery.

YOU CAN DO THIS. Now go right ahead and kick it's, um, ---, well kick it - you get the drift. lol.

All the best.

Blessings,

Bluerose

Thanks
Bluerose,
Thank you so much for your quick response and kind words. My spirits have been picking up as the weather has finally gotten better here and I can actually get outside without having a heat stroke! I was able to enjoy some older passions and maybe even found a couple new ones this weekend so I am doing much better! I am learning to take things one day at a time and not worry about the things I cant control. Slowly but surely I'm figuring out how to deal with this thing. Also I got some great news! My LDH levels (lymphoma markers as I sort of understood from the doctor) are very close to normal and my Epstein Barr virus levels have gone from 15000 to under 100. Sounds like the chemo is kicking the cancer's butt!

Thanks again,
Ana

bluerose

anag21 said:

Thanks
Bluerose,
Thank you so much for your quick response and kind words. My spirits have been picking up as the weather has finally gotten better here and I can actually get outside without having a heat stroke! I was able to enjoy some older passions and maybe even found a couple new ones this weekend so I am doing much better! I am learning to take things one day at a time and not worry about the things I cant control. Slowly but surely I'm figuring out how to deal with this thing. Also I got some great news! My LDH levels (lymphoma markers as I sort of understood from the doctor) are very close to normal and my Epstein Barr virus levels have gone from 15000 to under 100. Sounds like the chemo is kicking the cancer's butt!

Thanks again,
Ana

Hey there Ana
Good to hear that your treatments seem to be working big time, keep that up. Also sounds like you are making your way through your cancer journey super well, no one said it was easy but you seem to be doing all the right things and keeping your interests up is a huge thing. Good going.

Keep us posted and again so happy to hear that things are looking up.

Take good care,

Bluerose

bluerose

Go_go_Gi_gi said:

Thanks Bluerose and everyone else!!
You are all important to me--your experiences, thoughts, struggles, etc. Thank you

This site is a great site--I agree with you Bluerose re: spirituality helping me through.
I believe in the power of prayer and positive thinking---praise for the good things we have, and the strong potential to regain our health---
Information and sharing from those of you who have had success is a boon and strength--also, sharing the difficulties provides freedom for us "newbies" to vent, cry, experience a wide range of conflicting emotions--without guilt---

I have hope!!!

Thank you all--susan

Anytime Susan
Well said Susan. If one has hope then one has the best chance there is. Keep up the fight Susan. I sure wish I had a site like this 25 years ago when I was going through my diagnosis and treatments, makes all the difference to know that you aren't alone. Support on many fronts is soooooooooo different today, there was very little when I was diagnosed but now there are programs in hospitals for support and groups all over the place and that is just amazing. There have been so many advancements in cancer support and treatments that I have seen over the 25 years of my journey with cancer and it's afterdays, simply amazing. I am happy for all those who are needing support - you have it in spades today. What a blessing !!!!

All the best,

Bluerose

anag21

bluerose said:

Hey there Ana
Good to hear that your treatments seem to be working big time, keep that up. Also sounds like you are making your way through your cancer journey super well, no one said it was easy but you seem to be doing all the right things and keeping your interests up is a huge thing. Good going.

Keep us posted and again so happy to hear that things are looking up.

Take good care,

Bluerose

Minor setback
Unfortunately I had a minor setback in treatment today. While getting my l-asperiginase infusion I had a pretty bad allergic reaction, hives, itchiness, and trouble breathing. The docs were able to get everything under control but I'm supposed to receive this infusion every other day for two weeks and this was only my first one. Not sure what's going to happen now. Since my cancer is pretty rare and there isn't much literature on it, I really was hoping to stick to the regiment that worked in trials and stuff. I'm really scared of changing things up and the other treatment not working as well. Onc says he has a lot of thinking and decisions to make tomorrow while I continue to worry about what will happen on Thursday! Here's hoping I continue to get better!

Ana

bluerose

anag21 said:

Minor setback
Unfortunately I had a minor setback in treatment today. While getting my l-asperiginase infusion I had a pretty bad allergic reaction, hives, itchiness, and trouble breathing. The docs were able to get everything under control but I'm supposed to receive this infusion every other day for two weeks and this was only my first one. Not sure what's going to happen now. Since my cancer is pretty rare and there isn't much literature on it, I really was hoping to stick to the regiment that worked in trials and stuff. I'm really scared of changing things up and the other treatment not working as well. Onc says he has a lot of thinking and decisions to make tomorrow while I continue to worry about what will happen on Thursday! Here's hoping I continue to get better!

Ana

Awww Ana, like you needed something else to worry about eh? Hugs
I know how you are feeling with something else going wrong right in the middle of a treatment, I too had things happen that set the treatments back a couple of times but it worked out. Who knows, maybe an alternate idea will in fact work better, you never know. When I decided to do a bone marrow transplant they had just changed the protocol and were just starting to try stem cell transplants and here I am 25 years later. My point is that if I had had the transplant only a month earlier (which I was supposed to by the way but I had something go wrong with treatment and had to wait) I swear a month earlier, without the stem cell, I would not be typing to you. So a change isn't always a bad thing.

Have faith.

Do you know if the oncologist you have is talking with other oncologists at other centres about your protocol? I know you have to get on with it but if there is any way he could check with others who might have had the same experience you might feel more confidant that others have been there before. You are obviously allergic to some part of the drug or it's suspension if it has any so there could well be an alternative others have used in the past. Hard to believe that you are the only one who was allergic to this particular drug/substance.

Maybe even put up a question on the board here and the title could say something like 'Anyone found allergic to ___________' during treatment' and see if anyone on the site has had the same experience. It's a long shot but you never know. This site is worldwide, someone else out there might have been through the same thing and it might help to pass it by the Oncologist if you find someone. Just a thought.

Ana you are in my prayers.

Hugs,

Bluerose

anag21

bluerose said:

Awww Ana, like you needed something else to worry about eh? Hugs
I know how you are feeling with something else going wrong right in the middle of a treatment, I too had things happen that set the treatments back a couple of times but it worked out. Who knows, maybe an alternate idea will in fact work better, you never know. When I decided to do a bone marrow transplant they had just changed the protocol and were just starting to try stem cell transplants and here I am 25 years later. My point is that if I had had the transplant only a month earlier (which I was supposed to by the way but I had something go wrong with treatment and had to wait) I swear a month earlier, without the stem cell, I would not be typing to you. So a change isn't always a bad thing.

Have faith.

Do you know if the oncologist you have is talking with other oncologists at other centres about your protocol? I know you have to get on with it but if there is any way he could check with others who might have had the same experience you might feel more confidant that others have been there before. You are obviously allergic to some part of the drug or it's suspension if it has any so there could well be an alternative others have used in the past. Hard to believe that you are the only one who was allergic to this particular drug/substance.

Maybe even put up a question on the board here and the title could say something like 'Anyone found allergic to ___________' during treatment' and see if anyone on the site has had the same experience. It's a long shot but you never know. This site is worldwide, someone else out there might have been through the same thing and it might help to pass it by the Oncologist if you find someone. Just a thought.

Ana you are in my prayers.

Hugs,

Bluerose

Another reaction today to the same chemo but half the dose =[

Anyway, unfortunately the protocol for my type of lymphoma has only been around for about 3 years and hasn't been used hardly at all in America. Therefore, there isn't much to talk about with other doctors as far as that goes. In fact, my oncologist is actually actively trying to get in touch with the Japanese author who came up with this regiment and proved its effectiveness in treating the disease to see what we should do and what our next step is as far as the reactions are concerned. I'm just really worried that I am going to turn into an experiment and that freaks me out. I want to stay on the protocol that is known to be effective!

Forgot to mention earlier that this drug is actually known for reactions, it's a relatively normal occurring. My biggest concern is changing the protocol from the only one that is known to work.

Ahhhhhh so much to think and worry about, but I will get through it. Like I said before I am showing improvement so I will just take that for what it is, keep my head held high, and try not to worry about the things I can't control.

Thank you so much for your help.
Ana

bluerose

anag21 said:

Another reaction today to the same chemo but half the dose =[

Anyway, unfortunately the protocol for my type of lymphoma has only been around for about 3 years and hasn't been used hardly at all in America. Therefore, there isn't much to talk about with other doctors as far as that goes. In fact, my oncologist is actually actively trying to get in touch with the Japanese author who came up with this regiment and proved its effectiveness in treating the disease to see what we should do and what our next step is as far as the reactions are concerned. I'm just really worried that I am going to turn into an experiment and that freaks me out. I want to stay on the protocol that is known to be effective!

Forgot to mention earlier that this drug is actually known for reactions, it's a relatively normal occurring. My biggest concern is changing the protocol from the only one that is known to work.

Ahhhhhh so much to think and worry about, but I will get through it. Like I said before I am showing improvement so I will just take that for what it is, keep my head held high, and try not to worry about the things I can't control.

Thank you so much for your help.
Ana

Hey Ana
Sorry to hear about another reaction to the protocol. Well the good news is that you are doing well so that is a huge thing and maybe this waiting will prove to be a good thing in the near future, who knows.

I guess the only thing that I can think of saying to you at this time, for your situation, is that when I was treated 25 years ago I had protocols that are much different from those today but they still worked for me and others so maybe they might have to go back to older protocols if you can't handle the most recent. Maybe that doesn't make any sense but it just seemed logical to me.

Anywho I'm sure they know what they are doing but maybe put the word out and see what others in your situation with the same cancers might have had in the way of treatments and discuss them with the doc.

All the best Ana.

Bluerose