20 Years Today!!!

hodgkoid2003

I’ve done it. I reached a milestone that I thought impossible upon being told, “You have cancer.” I’ve reached the 20 year mark in remission, without relapse.

While I do realize it is a big deal, to survive cancer this long, as always, I consider it bitter sweet. There are so many that I’ve had to say goodbye to from this disease, and so many more who battle today. Almost two years ago now, I also discovered that my cure has come at a price.

But just as there has been progress in fighting cancer, a relatively new field of medicine is evolving. Medicine is finally recognizing that with longevity, there are fairly good chances that late side effects from those treatments may have an effect later in life. Long ago, cancer patients didn’t live long enough to develop these side effects. Today, there are literally hundreds of thousands of us surviving decades.

Today, discovering that I have late effect issues is difficult, but is also kind of a relief. Because for too long, things just didn’t feel right whether it was fatigue, chest discomfort, back pain, or breathing issues. But for the normal-looking patient, doctors didn’t know what to look for. My late effects are managed, and for the most part, you can’t tell that I am dealing with anything. This is a compliment of the highest degree to the team of medical specialists from all levels that I deal with. Unless you hear it from me, or my shirt is open far enough, you’d never know anything was done to me. One particular thing that I overlooked and only came to realize recently, is how my entire healthy history changed me and my life emotionally twenty years ago. I can finally admit that.

Overall, life is great. I am blessed with a beautiful family. I look forward to hopefully another 20th anniversary milestone for my heart bypass which would also put my cancer survivorship well over 35 years, but at least I’d get to see my girls graduate. There used to be a time, when you wouldn’t be able to count on this. Today, I look forward to it.

This past fall, while continuing to meet new members of my medical team, I was able to locate and visit with two very important people from my past. One was the radiation tech that treated me, and the other was my oncology nurse. It provided me with much needed closure, as I “ran and not walked” out of the doctor’s offices without ever looking back. I owed these to my life, and I had never even thanked them. I’m sure I’m not the only cancer patient who wanted to forget they ever had cancer, but honestly, could they ever really know what happened to the people who’s lives they touched? We exchanged a lot of stories, past and present, but clearly, it was definitely my life coming full circle in this chapter. And then gave the longest hug of my life, and finally said “Thank You.”

Through the good times, and bad, please know that you have been a part of what has gotten me through the last twenty years.


Paul E., 44
Lansdale, PA
HDIIIbNS
rads
MOPP-ABV
cured 20 years without a relapse
2x CABG 4/08
calcification of aortic valve, slight mention of murmur, stenosis, mild arthereosclerosis
pulmonary restrictions (76% capacity)
muscular degeneration/atrophy in neck and shoulders
osteopenia in L1-L4 vertebrae
hypothyroid and infertile

But life is good with 2 beautiful daughters adopted from China

slickwilly

Congrats
Congrats Paul. 20 years of remission is amazing. And I am glad you have found some closure and peace in your life. You have a beautiful family. As a seven year survivor I am so happy when the sun comes up each morning. As a parent each day with our children is quite special. We have been blessed and I never forget that. I hope you have many more happy years with your family Paul. OHHH I wish my children were little again. Slickwilly

jb051955

Good on you Hodgkoid 2003!
Congratulations!

I found it so interesting to find this site because I have had HD two times, 12 years apart, the first time in 1981. The second time was the same cell type, but not as developed since I recognized it right away.

I believe I was diagnosed with stage 2A. I did not have radiation the first time around, only MOPP/ABVD. I didn't tolerate the ABVD, so I only had 9 cycles of MOPP and no ABVD, prior to a splenectomy for staging purposes. (never missed the thing as far as I can tell). I had a total remission, and no recurrence for 12 years.

Then it did reappear, and this time I had full mantle radiation followed by 9 months of chemo. Wow, did everything change so much in those twelve years, as far as nausea treatments, etc. I have been in remission now since then, so it has been another 17 years, can that be right? Jeez! I have not made a study or lived my life as a cancer survivor per se, just have been happy to be here and haven't had a lot of problems until the last few years.

I have been diagnosed with psoriatic arthritis (my dad had it too) I take some fancy medicines to keep that in control, but still have problems with some joint discomfort and FATIGUE. I have chronic iritis which has caused problems with my vision, and is related to the arthritis somehow.

I have Menier's Disease, which causes tinitus, hearing loss, and balance problems but this is pretty much under control with some simple meds.

I have often wondered if some of my fatigue, chest pain, skin soreness, muscle weakness and brain fog isn't a side effect of cancer treatment, so it was interesting to read your story and others' as well. At the time I had radiation, they did the best they could to shield the lungs and female organs, although my thyroid failed right on schedule and had an early menopause.

My doctors do think all my ailments are related to my fouled up immune system though.

I am contemplating applying for SSD and have wondered whether to mention the Hodgkins and treatment, since there is no direct evidence of it being a problem. I have not had the energy to work full time for quite a while and quit my part time job in May, and can't see going back to work. I worked as a secretary and typing for any length of time makes my hands hurt. I worked through all my treatments over the years, and I think I did my fair share there.

Maybe I should look into "late side effects", is there treatment or just study?

There, now I shared my story of longevity too! I have no regrets for any treatment I endured. I know they were doing the best they knew how at the time.

Hurray for still being here to talk about it!

Unknown

This comment has been removed by the Moderator

miss maggie

20 years remission
I just finished my chores in the house, and signed onto our site. What a beautiful way to start my day. You have a beautiful family. So sorry for all you endured because of the treatment you received. May you continue your remission into the long future ahead of you.

I have one question, when you say muscular degeneration/atophy in neck and shoulders, is this a form of arthitis? I developed so much pain in my left knee, where I never had it before.
I also have some fatigue. I was treated with rituxan once weekly for 4 weeks the beginning of dec 2009, and finished treatment end of dec 2009. My symptoms in my leg knee started mid jan 2010. Just wondering? I have stage 1, low grade B cell NHL.

Paul God Bless you and your family. Please keep in touch often. You truly write beautifully.

Maggie

miss maggie

jb051955 said:

Good on you Hodgkoid 2003!
Congratulations!

I found it so interesting to find this site because I have had HD two times, 12 years apart, the first time in 1981. The second time was the same cell type, but not as developed since I recognized it right away.

I believe I was diagnosed with stage 2A. I did not have radiation the first time around, only MOPP/ABVD. I didn't tolerate the ABVD, so I only had 9 cycles of MOPP and no ABVD, prior to a splenectomy for staging purposes. (never missed the thing as far as I can tell). I had a total remission, and no recurrence for 12 years.

Then it did reappear, and this time I had full mantle radiation followed by 9 months of chemo. Wow, did everything change so much in those twelve years, as far as nausea treatments, etc. I have been in remission now since then, so it has been another 17 years, can that be right? Jeez! I have not made a study or lived my life as a cancer survivor per se, just have been happy to be here and haven't had a lot of problems until the last few years.

I have been diagnosed with psoriatic arthritis (my dad had it too) I take some fancy medicines to keep that in control, but still have problems with some joint discomfort and FATIGUE. I have chronic iritis which has caused problems with my vision, and is related to the arthritis somehow.

I have Menier's Disease, which causes tinitus, hearing loss, and balance problems but this is pretty much under control with some simple meds.

I have often wondered if some of my fatigue, chest pain, skin soreness, muscle weakness and brain fog isn't a side effect of cancer treatment, so it was interesting to read your story and others' as well. At the time I had radiation, they did the best they could to shield the lungs and female organs, although my thyroid failed right on schedule and had an early menopause.

My doctors do think all my ailments are related to my fouled up immune system though.

I am contemplating applying for SSD and have wondered whether to mention the Hodgkins and treatment, since there is no direct evidence of it being a problem. I have not had the energy to work full time for quite a while and quit my part time job in May, and can't see going back to work. I worked as a secretary and typing for any length of time makes my hands hurt. I worked through all my treatments over the years, and I think I did my fair share there.

Maybe I should look into "late side effects", is there treatment or just study?

There, now I shared my story of longevity too! I have no regrets for any treatment I endured. I know they were doing the best they knew how at the time.

Hurray for still being here to talk about it!

att: JB
Hello JB,

Absolutely, you should apply for SSD. You have nothing to lose, and everything to gain.
Think of it this way, it always depends on the person you see at the SS office, and the doctor they assign you to from SS. Also, your doctor would have to fill out a form, and I am sure he understands what you are going through. He would fill out the form in your favor. If they turn you down, you can always hire an attorney at no cost to you. If they win your case, they would take some of your money from your first check. There after all the checks to follow will be yours. My friend was turned down (she has so many health issues), she hired a lawyer, and was approved.

Question? psoriatic arthritis, what is that? I developed after 3 weeks of treatment lots of pain in my left knee, and fatigue. No problem during treatment.

God bless, continue with good health. maggie

jb051955

miss maggie said:

att: JB
Hello JB,

Absolutely, you should apply for SSD. You have nothing to lose, and everything to gain.
Think of it this way, it always depends on the person you see at the SS office, and the doctor they assign you to from SS. Also, your doctor would have to fill out a form, and I am sure he understands what you are going through. He would fill out the form in your favor. If they turn you down, you can always hire an attorney at no cost to you. If they win your case, they would take some of your money from your first check. There after all the checks to follow will be yours. My friend was turned down (she has so many health issues), she hired a lawyer, and was approved.

Question? psoriatic arthritis, what is that? I developed after 3 weeks of treatment lots of pain in my left knee, and fatigue. No problem during treatment.

God bless, continue with good health. maggie

Back to Miss Maggie - psoriatic arthritis
Thank you for your advice. I am sure I will follow through with the SSD, I have yet to approach my rhuematologist about it, but will soon. We could use the income.

Psoriatic arthritis is similar to rhuematoid arthritis in that it is an inflamatory auto immune disease that causes swelling and pain, and sometimes damage, to joints and tendons. Many people with psoriasis end up with this form of arthritis. There are several different kinds, but the kind I have does not disfigure my hands or feet so it doesn't show on the outside.

We figure it is all immune system related, the Hodgkins, arthritis, iritis, probably chronic fatigue syndrome, Menier's and perhaps some Sjogrens mixed in. Anyway, I never let it stop me until recently, and now I don't have much stamina and can't think as clearly as I used to. But so is life. I take Enbrel and methotrexate and keep the inflamation in check, and the doc says I won't have to have any joints replaced. Like with Hodgkins treatment, I always respond well to the medicines I am given, so that is good.

jb

yesyes2

20 years remission
Hi Paul,
Congratulations on your 20 year remission. You are a real inspiration to all of us who are still fighting blood cancers. And your story is a testement to you perserverance and tenacity. I really have enjoy reading your threads. And I want to thank you for all the information you have supplied on late effects doctors, too.
Here's to 40 more years of remission. Bless you and your family.
Leslie

yesyes2

jb051955 said:

Back to Miss Maggie - psoriatic arthritis
Thank you for your advice. I am sure I will follow through with the SSD, I have yet to approach my rhuematologist about it, but will soon. We could use the income.

Psoriatic arthritis is similar to rhuematoid arthritis in that it is an inflamatory auto immune disease that causes swelling and pain, and sometimes damage, to joints and tendons. Many people with psoriasis end up with this form of arthritis. There are several different kinds, but the kind I have does not disfigure my hands or feet so it doesn't show on the outside.

We figure it is all immune system related, the Hodgkins, arthritis, iritis, probably chronic fatigue syndrome, Menier's and perhaps some Sjogrens mixed in. Anyway, I never let it stop me until recently, and now I don't have much stamina and can't think as clearly as I used to. But so is life. I take Enbrel and methotrexate and keep the inflamation in check, and the doc says I won't have to have any joints replaced. Like with Hodgkins treatment, I always respond well to the medicines I am given, so that is good.

jb

For jb051944
Hi JB,
I really don't want to get this thread too far off topic but I do have a question and concern for you. I have a very rare form of b & t cell NHL called immun-suppressed lympho proliferative disorder (LPD). I also have rhuematoid arthritis and Sjogrens Syndrome and several other auto immune diseases. I was on methotrexate for 14 yrs and Humira for 4 yrs. My doctor's believe my LPD was the direct result of my taking these immune suppressing drugs. LPD is very rare but increasing because ot Humira and Enbrel usage. And it's not easy to treat because there are so few of us. So wondering if your doctor has discussed with you the connection to LPD, especially with your HD history. If not please discuss the lymphoma connection with them as I only want the best for you. Every time I hear of someone taking these drugs I am afraid for them. I am using Rituxan not only for my b cell NHL but also for my RA. I understand it is now being used for PA. It controls my RA very well. Maybe it's worth checking out
Good luck to you,
Leslie

miss maggie

jb051955 said:

Back to Miss Maggie - psoriatic arthritis
Thank you for your advice. I am sure I will follow through with the SSD, I have yet to approach my rhuematologist about it, but will soon. We could use the income.

Psoriatic arthritis is similar to rhuematoid arthritis in that it is an inflamatory auto immune disease that causes swelling and pain, and sometimes damage, to joints and tendons. Many people with psoriasis end up with this form of arthritis. There are several different kinds, but the kind I have does not disfigure my hands or feet so it doesn't show on the outside.

We figure it is all immune system related, the Hodgkins, arthritis, iritis, probably chronic fatigue syndrome, Menier's and perhaps some Sjogrens mixed in. Anyway, I never let it stop me until recently, and now I don't have much stamina and can't think as clearly as I used to. But so is life. I take Enbrel and methotrexate and keep the inflamation in check, and the doc says I won't have to have any joints replaced. Like with Hodgkins treatment, I always respond well to the medicines I am given, so that is good.

jb

To JB
Thanks for the info.

Hmmm, quite scary about the medication enbrel, and methotrexate. I sure by now you read the post about these medicines. I hate taking anything. I will see how it goes.

miss maggie

JoanieP

Congratulations paul
What encouraging news. I was dx in Jan 2009 with NHL follicular 3A lymphoma. After 6 chemo treatments ,I was in remission after 4, I was Cancer free in June and Sept. I continue to have Ritoxin every 12 weeks. This wonderful morning they removed my port and it is a blessed day.!!!!! Cograts on your remission. You are a role model for us. God bless you.

winthefight

Congrats to both survivors of 19 and 20 years!
What a blessing to you and your family. And what such an encouraging story for us! I am a 2 yr NHL survivor. I love hearing these wonderful words of survivor success stories. You give us all hope to continue to fight! So, a thousand thanks to you for sharing this wonderful news!

May God continue to bless you and I look forward to celebrating the next 20 years with you!

Be blessed!

Speed

winthefight said:

Congrats to both survivors of 19 and 20 years!
What a blessing to you and your family. And what such an encouraging story for us! I am a 2 yr NHL survivor. I love hearing these wonderful words of survivor success stories. You give us all hope to continue to fight! So, a thousand thanks to you for sharing this wonderful news!

May God continue to bless you and I look forward to celebrating the next 20 years with you!

Be blessed!

Congrats!!!
Welcome to the Long – Long Survivors club. I am a 38 year survivor of stage IIIb HD as well and a new member to this site. I have enjoyed reading your posting here and your words of encouragement to others. Congrats and may there be many, many more anniversaries for you and your family to celebrate in the future.
Speed…

DT44

Hope you live to 100 and more
Paul, I know from one of the other discussions that you have NLP and I am so happy for you and your family that you are 20 years and counting. I bet when you look back things don't seem as difficult as when you were going through them. My son is a 6 months with NLP and your experience will make it easie to look forward. I wish you and your family all happiness and best of health.