Caregiver21
11-14-2007, 12:14 AM
Hi everyone,
Since I'm new on the board, I was hoping that those with Hodgkin's could chime in.
I read a lot of the threads but since this is a general lymphoma board, I wanted to know if there were many on this board that have/had Hodgkin's.
I hope to give encouragement (and get some pick-me-ups when I'm down! ;) ) to those going through this awful fight. God Bless!
Eva
Since I'm new on the board, I was hoping that those with Hodgkin's could chime in.
I read a lot of the threads but since this is a general lymphoma board, I wanted to know if there were many on this board that have/had Hodgkin's.
I hope to give encouragement (and get some pick-me-ups when I'm down! ;) ) to those going through this awful fight. God Bless!
Eva
Sponsor
singer78
11-14-2007, 01:22 PM
Hi Eva,
Since no one has responded yet....well....here I am.
As you know already, I have Hodgkin's 2A, dx'd in May of this year.
Since then, it's been a whirlwind. I've yet to catch my breath.
I have noticed that there seems to be more people here with "non Hodgkin's" lymphoma, than with "Hodgkin's." Or maybe it's just this particular board.
I noticed, when I first found out & after doing research, that it seemed there were a lot more young people with Hodgkin's. It makes me wonder if, perhaps, it might stay 'dormant' in one's system for years. I had swollen glands ALL my life. I had my tonsils out when I was 6, and my parents thought that would help. It really didn't. I was such a sickly child...But, somehow managed through....until midlife....then WHAM...
How is your husband these days? Is his prognosis good?
I'm into my 2nd day of an antidepressant, myself. I know if I don't do something, I'll be a complete basket-case, waiting for my Pet/CT scan coming up in December.
I woke up today (even after only having taken 1 antidepressant so far) not feeling quite so desperate. Is it possible it's already working? If so,....I should've done that a long time ago.
This disease is not easy, that's for sure, as you already know.
Cancer is scary, no matter how you look at it.
I bet your husband is lucky to have someone like you, to care for him.
I don't know what I'd do without my husband. He's my "rock."
It's nice to have you on the board.
I've made many lovely friends here (you will, too) & the support is awesome!
love, S.
Since no one has responded yet....well....here I am.
As you know already, I have Hodgkin's 2A, dx'd in May of this year.
Since then, it's been a whirlwind. I've yet to catch my breath.
I have noticed that there seems to be more people here with "non Hodgkin's" lymphoma, than with "Hodgkin's." Or maybe it's just this particular board.
I noticed, when I first found out & after doing research, that it seemed there were a lot more young people with Hodgkin's. It makes me wonder if, perhaps, it might stay 'dormant' in one's system for years. I had swollen glands ALL my life. I had my tonsils out when I was 6, and my parents thought that would help. It really didn't. I was such a sickly child...But, somehow managed through....until midlife....then WHAM...
How is your husband these days? Is his prognosis good?
I'm into my 2nd day of an antidepressant, myself. I know if I don't do something, I'll be a complete basket-case, waiting for my Pet/CT scan coming up in December.
I woke up today (even after only having taken 1 antidepressant so far) not feeling quite so desperate. Is it possible it's already working? If so,....I should've done that a long time ago.
This disease is not easy, that's for sure, as you already know.
Cancer is scary, no matter how you look at it.
I bet your husband is lucky to have someone like you, to care for him.
I don't know what I'd do without my husband. He's my "rock."
It's nice to have you on the board.
I've made many lovely friends here (you will, too) & the support is awesome!
love, S.
FullCircle08
11-19-2007, 05:40 PM
hey guys --thought I would chime in also to give a DIFFERENT perspective. I was diagnosed with Hodgkins's 2A in March of 1997. Yes 10 years ago. I am doing fine, (little bump I am dealing with along the way unrelated to cancer) I have been SUPER healthy and actually have totally forgotten about the disease. I never thought I would say that or I would ever reach this point, but it happens. I am proof that life goes on and there is a HUGE bright light at the end of the tunnel --Stick with it and be strong
O
O
singer78
11-19-2007, 08:12 PM
Thank you.
I LOVE hearing good news---especially from a Hodgkin's survivor!!!
:)
Glad you're doing well.
I LOVE hearing good news---especially from a Hodgkin's survivor!!!
:)
Glad you're doing well.
Caregiver21
11-20-2007, 12:39 AM
Hi Meddguy (and Singer!),
Thanks for the chime in. I really hope that we can get to where you are now! It's so encouraging to hear from the survivors! Thanks for coming back on the board and helping us...I'd like to stay on and make sure that I can support those that are going through treatment right now and one day, be able to give advise while looking back at the years of Johnny being in remission!
Singer, you too! I just realized I didn't see your question in the last post here. Johnny's prognosis is good. He received a clean PET after finishing 6 cycles of chemo and prior to starting his rads. They said that it was a really good sign of his prognosis, to be clean prior to starting rads.
We went for 3 opinions prior to "hiring" his Onc (I was able to get them all within 2 weeks of each other). It was really something I believed strongly in and I wanted to make sure that Johnny felt exceptionally comfortable with his Onc. He didn't get any "warm and fuzzies" from the first Onc and that is what induced me to seek other opinions. We finally went with the leading Hodgkins guy in our area, and he was very impressive. Johnny's prognosis is 80-85% curable and that's what all 3 said. All 3 also had the same plan for treatment so it really boiled down to chemistry and comfort for Johnny. He made the final decision and I support him fully.
Your prognosis should be as good, if not better than Johnny's, Singer. You don't have the "B" symptoms and that jumps you up a bit in the percentages. Take heart! It will all be over soon and you'll be able to get back to doing the things you enjoy.
I pray that both you (Singer) and Meddguy continue to do well, wherever life leads you.
Take care!
Eva
Thanks for the chime in. I really hope that we can get to where you are now! It's so encouraging to hear from the survivors! Thanks for coming back on the board and helping us...I'd like to stay on and make sure that I can support those that are going through treatment right now and one day, be able to give advise while looking back at the years of Johnny being in remission!
Singer, you too! I just realized I didn't see your question in the last post here. Johnny's prognosis is good. He received a clean PET after finishing 6 cycles of chemo and prior to starting his rads. They said that it was a really good sign of his prognosis, to be clean prior to starting rads.
We went for 3 opinions prior to "hiring" his Onc (I was able to get them all within 2 weeks of each other). It was really something I believed strongly in and I wanted to make sure that Johnny felt exceptionally comfortable with his Onc. He didn't get any "warm and fuzzies" from the first Onc and that is what induced me to seek other opinions. We finally went with the leading Hodgkins guy in our area, and he was very impressive. Johnny's prognosis is 80-85% curable and that's what all 3 said. All 3 also had the same plan for treatment so it really boiled down to chemistry and comfort for Johnny. He made the final decision and I support him fully.
Your prognosis should be as good, if not better than Johnny's, Singer. You don't have the "B" symptoms and that jumps you up a bit in the percentages. Take heart! It will all be over soon and you'll be able to get back to doing the things you enjoy.
I pray that both you (Singer) and Meddguy continue to do well, wherever life leads you.
Take care!
Eva
SandieInSC
11-24-2007, 08:24 PM
I was dx'd w/hodgkin's lymphoma, left leg, inguinal area, back in May. Due to throat issues (cancer) and my former cancer dr being a jerk, I dont even know what stage. He wrote hodgkin's disease, unspecified on one form. I recently 'fired' him.
Going to Cancer Treatment Centers of America in Zion, ILL, this coming Tuesday. They have state of the art cancer equipment and caring dr's. A week's worth of tests, then they talk w/my about their recommendations.
I've read HL is one of the rarest forms of cancer, 1% of all dx'd. It's supposed to be a 'mans' type of cancer, and is highly curable if caught early. I'm female, so I guess I'm extra special.. lol..
humor keeps me sane. :)
Sandie in S.Carolina
Hi everyone,
Since I'm new on the board, I was hoping that those with Hodgkin's could chime in.
I read a lot of the threads but since this is a general lymphoma board, I wanted to know if there were many on this board that have/had Hodgkin's.
I hope to give encouragement (and get some pick-me-ups when I'm down! ;) ) to those going through this awful fight. God Bless!
Eva
Going to Cancer Treatment Centers of America in Zion, ILL, this coming Tuesday. They have state of the art cancer equipment and caring dr's. A week's worth of tests, then they talk w/my about their recommendations.
I've read HL is one of the rarest forms of cancer, 1% of all dx'd. It's supposed to be a 'mans' type of cancer, and is highly curable if caught early. I'm female, so I guess I'm extra special.. lol..
humor keeps me sane. :)
Sandie in S.Carolina
Hi everyone,
Since I'm new on the board, I was hoping that those with Hodgkin's could chime in.
I read a lot of the threads but since this is a general lymphoma board, I wanted to know if there were many on this board that have/had Hodgkin's.
I hope to give encouragement (and get some pick-me-ups when I'm down! ;) ) to those going through this awful fight. God Bless!
Eva
Caregiver21
11-25-2007, 01:24 AM
Sandie, good luck to you! I hope you'll get much better care at the cancer center. Thanks for the feedback.
You're right, humor does keep a person sane!
Eva
You're right, humor does keep a person sane!
Eva
GCC
12-20-2007, 11:01 AM
I hope you all are still reading this board.
I too am from S.C.
I had Hodgkin's disease in 1981 & had radiation therapy.
Considered "cured" but the radiation therpy is now the problem.
It destroyed my thyroid & I had poor hypo-thyroid treatment for the better part of 2 decades. Now I am informed about what good hypo-thyroid treatment is and am getting that.
The radiation therapy I had in 1981 resulted in breast cancer in 2003. I had bilateral mastectomy with reconstruction @ M.D. Anderson Cancer center in Houston Tx for that. They told me there that the radiation therapy caused the breast cancer. Local doctors didn't seem to know that I was at high risk for breast cancer because of the radiation therapy (or they chose to keep that information to themselves).
I questioned what else I am at high rist for (due to the radiation therapy). It seems...lung cancer & heart disease stand out in my mine.
I have been having chest pain and shortness of breath. I called and made an appointment with cardiologist. Earliest he could see me was Jan 23. I told her I would be there if I was still alive then.
I had blood work done to check my thyroid (and rule out that high thyroid levels are the cause since I have to take thyroid hormones, haven't got results back yet). I complained to my husband, who has some pull at doctors offices. He got me an appointment today at 2:00
I'e been reading online about late effects of radiation therapy (yes even 20+ years out). Congestion heart failure seems to be what I need to be concerned with.
They don't use as much radiation therapy as they once did because of the late side effects from it. I had (I believe 400 rads).
Did any of you all have radiation alone for your Hodgkins? Do you remember how much.
I live in Florence, SC. For the other poster who is from SC, what town are you in (if you don't mind my asking)?
I too am from S.C.
I had Hodgkin's disease in 1981 & had radiation therapy.
Considered "cured" but the radiation therpy is now the problem.
It destroyed my thyroid & I had poor hypo-thyroid treatment for the better part of 2 decades. Now I am informed about what good hypo-thyroid treatment is and am getting that.
The radiation therapy I had in 1981 resulted in breast cancer in 2003. I had bilateral mastectomy with reconstruction @ M.D. Anderson Cancer center in Houston Tx for that. They told me there that the radiation therapy caused the breast cancer. Local doctors didn't seem to know that I was at high risk for breast cancer because of the radiation therapy (or they chose to keep that information to themselves).
I questioned what else I am at high rist for (due to the radiation therapy). It seems...lung cancer & heart disease stand out in my mine.
I have been having chest pain and shortness of breath. I called and made an appointment with cardiologist. Earliest he could see me was Jan 23. I told her I would be there if I was still alive then.
I had blood work done to check my thyroid (and rule out that high thyroid levels are the cause since I have to take thyroid hormones, haven't got results back yet). I complained to my husband, who has some pull at doctors offices. He got me an appointment today at 2:00
I'e been reading online about late effects of radiation therapy (yes even 20+ years out). Congestion heart failure seems to be what I need to be concerned with.
They don't use as much radiation therapy as they once did because of the late side effects from it. I had (I believe 400 rads).
Did any of you all have radiation alone for your Hodgkins? Do you remember how much.
I live in Florence, SC. For the other poster who is from SC, what town are you in (if you don't mind my asking)?
singer78
12-20-2007, 03:11 PM
Hi,
These are the posts that scare me....and rightly so.
I'm so sorry to hear what you're dealing with.
I'm assuming you did not have chemo.
I had 8 chemo treatments & 20 radiation treatments...finished in early November.
They assured me, it was low dose---I really don't know what the strength was.
I've experienced pain between the shoulder blades from it, but it's slowly subsiding.
The radiation is really what scared me, almost more than the chemo, because of all the scary side-effects. My onc was very emphatic about me having it, to "clean up" what cells might have been left behind that chemo didn't touch.
I'm trying to remain positive about this....since I've gotten a "normal" scan, just a few weeks ago. I'm slowly feeling better, although my iron levels are depleted.
You sound pretty destraught. The Medical Community certainly knows more than they did, years ago.
Are you sure this is caused by radiation? I suppose it's really hard to name the exact culprit behind any disease.
I have one more question:
What area did you get radiated?
I know it was different back then---from what I hear.
God Bless....and certainly the best of luck to you.
I'm praying for good news for you.
S.
These are the posts that scare me....and rightly so.
I'm so sorry to hear what you're dealing with.
I'm assuming you did not have chemo.
I had 8 chemo treatments & 20 radiation treatments...finished in early November.
They assured me, it was low dose---I really don't know what the strength was.
I've experienced pain between the shoulder blades from it, but it's slowly subsiding.
The radiation is really what scared me, almost more than the chemo, because of all the scary side-effects. My onc was very emphatic about me having it, to "clean up" what cells might have been left behind that chemo didn't touch.
I'm trying to remain positive about this....since I've gotten a "normal" scan, just a few weeks ago. I'm slowly feeling better, although my iron levels are depleted.
You sound pretty destraught. The Medical Community certainly knows more than they did, years ago.
Are you sure this is caused by radiation? I suppose it's really hard to name the exact culprit behind any disease.
I have one more question:
What area did you get radiated?
I know it was different back then---from what I hear.
God Bless....and certainly the best of luck to you.
I'm praying for good news for you.
S.
GCC
12-20-2007, 05:20 PM
Thanks S. for your post and good wishes.
I did not have chemo in 1981 for the Hodgkins disease, but I had chemo in 2003 for the breast cancer.
I did see the cardiologist today. He gave me a script for a beta blocker and I am scheduled for a heart echo and nuclear medicene stress test. I opted not to have those until January. The cardiologist did not think there was a hurry and it suite me to wait.
I have had low magnesium and high calcium levels in the past...so I had researched about that and boughts 2 books about low magnesium. I remember reading that magnesium is a natural beta blocker (and mine was very low in the past).
And I have also read that low B vitamans can result in tachycardia (fast pulse).
After I was found to have very low magnesium levels I supplemented with magnesium and the frequent late afternoon shoulder and neck pain I had went away. I am not goint to rush out and fill that beta blocker Rx. I did rush home and take some magnesium though!
Also, I will see about getting sub-lingual B12 vits too.
Side note to anyone having lots of medical issues....get COPIES of all your lab reports, doctors notes, etc....so you can keep that info, so you will be familiar with what you had done. Its a good idea to find out how many rads of radiation you had. And it is also a good idea to get copies of all our future test.
Medical records have a way of getting lost and mis-placed. Get your own copies and keep them in a file.
S, did the radiation therapy affect your thyroid?
I did not have chemo in 1981 for the Hodgkins disease, but I had chemo in 2003 for the breast cancer.
I did see the cardiologist today. He gave me a script for a beta blocker and I am scheduled for a heart echo and nuclear medicene stress test. I opted not to have those until January. The cardiologist did not think there was a hurry and it suite me to wait.
I have had low magnesium and high calcium levels in the past...so I had researched about that and boughts 2 books about low magnesium. I remember reading that magnesium is a natural beta blocker (and mine was very low in the past).
And I have also read that low B vitamans can result in tachycardia (fast pulse).
After I was found to have very low magnesium levels I supplemented with magnesium and the frequent late afternoon shoulder and neck pain I had went away. I am not goint to rush out and fill that beta blocker Rx. I did rush home and take some magnesium though!
Also, I will see about getting sub-lingual B12 vits too.
Side note to anyone having lots of medical issues....get COPIES of all your lab reports, doctors notes, etc....so you can keep that info, so you will be familiar with what you had done. Its a good idea to find out how many rads of radiation you had. And it is also a good idea to get copies of all our future test.
Medical records have a way of getting lost and mis-placed. Get your own copies and keep them in a file.
S, did the radiation therapy affect your thyroid?
singer78
12-20-2007, 06:41 PM
Hi,
You sound like you're on top of everything.
I'm just now starting to supplement with vitamin B stresstabs, a different form of iron, and I've added vitamin C to the iron for absorption. A breast cancer survivor friend of mine is helping me along. She's not too fond of the Medical Community kind of "poo-poo-ing" Alternative medicine.
I know I don't eat right all the time---I'm trying. But, I'm becoming a firm believer in taking the proper supplements. It's just hard to decide what you need.
So far, no problem with my thyroid.
They checked it with my last onc appt, and the bloodwork was normal.
I love hearing that word, "normal."
My son was actually given a "beta blocker" to take for his migraines. He took it for a month or so, and decided it wasn't for him...although he did say it helped. He's trying to manage his migraines with diet & supplements, also.
Thanks for the "head's up" on medical records.
I plan on relocating someday, and that's a good idea to get a copy.
Good luck.
I'm so happy you've beat 2 nasty diseases. You must be stronger than you give yourself credit for!!
S.
You sound like you're on top of everything.
I'm just now starting to supplement with vitamin B stresstabs, a different form of iron, and I've added vitamin C to the iron for absorption. A breast cancer survivor friend of mine is helping me along. She's not too fond of the Medical Community kind of "poo-poo-ing" Alternative medicine.
I know I don't eat right all the time---I'm trying. But, I'm becoming a firm believer in taking the proper supplements. It's just hard to decide what you need.
So far, no problem with my thyroid.
They checked it with my last onc appt, and the bloodwork was normal.
I love hearing that word, "normal."
My son was actually given a "beta blocker" to take for his migraines. He took it for a month or so, and decided it wasn't for him...although he did say it helped. He's trying to manage his migraines with diet & supplements, also.
Thanks for the "head's up" on medical records.
I plan on relocating someday, and that's a good idea to get a copy.
Good luck.
I'm so happy you've beat 2 nasty diseases. You must be stronger than you give yourself credit for!!
S.
GCC
12-21-2007, 09:30 AM
Thanks.
I would get a copy of the "normal" thyroid test results.
There are new normal ranges that many doctors still don't know about.
Optomal TSH is low, around 1.0 or at least BELOW 2.0 (though many doctors still think much higher is ok, it's NOT).
So, I suggest that you find out what your TSH is, your number.Do NOT settle for being told it is "normal".
I was poorly treated for years because of the way they test and interpret throid hormones.
It can be very difficult to negotiate the medical system. It helps that I was in the medical field before and that my husband has and MD after his name.
I would get a copy of the "normal" thyroid test results.
There are new normal ranges that many doctors still don't know about.
Optomal TSH is low, around 1.0 or at least BELOW 2.0 (though many doctors still think much higher is ok, it's NOT).
So, I suggest that you find out what your TSH is, your number.Do NOT settle for being told it is "normal".
I was poorly treated for years because of the way they test and interpret throid hormones.
It can be very difficult to negotiate the medical system. It helps that I was in the medical field before and that my husband has and MD after his name.
pinkmada
12-26-2007, 07:43 PM
Hey guys, I just want to say that I have just requested all my medical records from all the hospitals i was admitted to and my old GP practice. They have offered me a nurse to go through them with me as I 'won't understand the terminology' i guess they don't know i am a student nurse (lol). once i have thouroughly read all the notes and figured out dates etc i am going to write a very long, scary complaint to the health board (i am not suing) I just don't want what happened to me to happen to someone else. I was deliberatly misdiagnosed and i have proof of that without even having my medical records. i guess they will think i am planning to take legal action so i hope that they are cr*pping themselves at the moment before i have even written the complaint.
xxx
ps. also really excited about getting to copies of my CT and PET scans just to see what my insides look like! lol
xxx
ps. also really excited about getting to copies of my CT and PET scans just to see what my insides look like! lol
abally99
01-05-2008, 09:06 AM
Hi all. just wanted to say i am currently undergoing chemo for Hodgkins 4b - 11 sessions in and another 5 to go!!
Have learnt to live with chemo and cancer and would quite happily chat to anyone who needs some support - i have a great understanding partner and family. But i realise not everyone is that luck and sometimes its good to talk to someone who knows maybe how ur feeling.
Anyway give me a shout, wopuld also like to just chat if you want to.
Take care all of you fellow Hodgkins people - remember its rare which makes you special! ;)
Have learnt to live with chemo and cancer and would quite happily chat to anyone who needs some support - i have a great understanding partner and family. But i realise not everyone is that luck and sometimes its good to talk to someone who knows maybe how ur feeling.
Anyway give me a shout, wopuld also like to just chat if you want to.
Take care all of you fellow Hodgkins people - remember its rare which makes you special! ;)
bw67
01-05-2008, 03:15 PM
Hey-
I just started a new thread titled TRANSPLANT COSTS? And then I found this one...
Since everyone on here either has or knows someone who has Hodgkin's Lymphoma, can any of you give me an estimate of what a stem cell transplant might cost??
One of my best friend's from high school has HL. I really don't know a lot about it, but on his website he indicates that a stem cell transplant might cure the condition, but it's apparently expensive and isn't covered by insurance...
Thanks, best of luck to all of you
BW
I just started a new thread titled TRANSPLANT COSTS? And then I found this one...
Since everyone on here either has or knows someone who has Hodgkin's Lymphoma, can any of you give me an estimate of what a stem cell transplant might cost??
One of my best friend's from high school has HL. I really don't know a lot about it, but on his website he indicates that a stem cell transplant might cure the condition, but it's apparently expensive and isn't covered by insurance...
Thanks, best of luck to all of you
BW
pinkmada
01-06-2008, 07:07 PM
he bw67. i'm in the UK so thankfully don't have that problem. I just wanted to say that it seems insane when insurance doesn't cover for things like that! it is a life saving procedure not teeth whitening! before i was diagnosed i thought about going private because no-body could or would diagnose me and after now working for the health service over here was still considering going private, only because i have had cancer no-one will touch me with a barge pole. i read in the policy however that after a diagnosis of cancer, initial consoltations are covered my insurance but chemo, radiotherapy etc is not and only x-rays and MRI's are covered, CT and PET are not covered, they also don't cover you for any psych/counselling etc. it seems insane! sorry for the rant. i just can't believe it!
i hope your friend is doing ok.
xx
i hope your friend is doing ok.
xx
Henrysmum
02-24-2008, 05:52 PM
Hi everyone,
I was diagnosed with Hodgkin's way back in 1978 at age 14,and have just realised it will be 30 years next month! My cancer was widespread by the time it was diagnosed ( I had been feeling ill for months and lost a lot of weight) but after a year of chemo which yes, I admit was at times horrendous I was pronounced cured. That was one of the best days of my life.
I have suffered no recurrence up to now and have 3 healthy children. However,I must admit I am concerned about the possible late effects of Hodgkin's treatment in the 70's and 80's.
I am now a 2nd year student nurse after wanting to be a nurse all my life ,even before my illness and I am loving every minute. To be in the position to give something back after all the excellent care and support I received is a wonderful feeling and I will never forget the team at Sheffield Children's hospital (Professor Lilleyman and team) for looking after me so well.
To anyone currently going through this hang on in there ... it is one of the most curable cancers and although the treatment can make you feel very weak and ill there is light at the end of the tunnel and you will make it and be cured.
Best wishes
Liz
I was diagnosed with Hodgkin's way back in 1978 at age 14,and have just realised it will be 30 years next month! My cancer was widespread by the time it was diagnosed ( I had been feeling ill for months and lost a lot of weight) but after a year of chemo which yes, I admit was at times horrendous I was pronounced cured. That was one of the best days of my life.
I have suffered no recurrence up to now and have 3 healthy children. However,I must admit I am concerned about the possible late effects of Hodgkin's treatment in the 70's and 80's.
I am now a 2nd year student nurse after wanting to be a nurse all my life ,even before my illness and I am loving every minute. To be in the position to give something back after all the excellent care and support I received is a wonderful feeling and I will never forget the team at Sheffield Children's hospital (Professor Lilleyman and team) for looking after me so well.
To anyone currently going through this hang on in there ... it is one of the most curable cancers and although the treatment can make you feel very weak and ill there is light at the end of the tunnel and you will make it and be cured.
Best wishes
Liz