Long Term Survivorship Issues

hodgkoid2003

CarolinaGrl said:

Late Term Effects
Hi everyone. My name is Shannon and I was diagnosed with stage IIIB HD in March of 1992 when I was 11 yrs old. I received combination chemo and rad treatment for about 8 months and on November 25 of 2009 I celebrated the 17th anniversary of my last treatmen. I have always know that I am at a higher risk for breast cancer, but it wasn't until I started doing some research on my own that I realized just how many late effects there can be for hodgkins survivors!! For the first 5 years after treatment I was followed by the FACT clinic at MUSC in south carolina where I received my treatments. After that I married into the AF and never thought to try finding another long term follow up clinic. I would just go in once a year and ask for blood work up, thyroid checks, etc. Starting 4 years ago, I have been dealing with progressive joint pain, chronic fatigue, migraines, and just tons of other things. So far my standing diagnosis is Fibromyalgia, but I really think there is more to it. I have been tested for RA and LUPUS but so far nothing. Just this weekend I started doing my own research and was astounded to find that even though it has a high cure rate, that childhood survivors of cancer are at the highest risk for second cancers and late effects. And the fact that I am female and started treatment before I was 12 puts me at the top of that list!! I brought this information to my primary care doc who is great, but I just don't think he has the time or resources to properly manage my care. He agreed and is helping me move my primary care to an internist. This is a great thing for me because since my care is currently on base, my doctor changes about every other year and I feel there is no continuity!! My husband and I just found out we are going to be at our current station in CA for another 4 years so I really want a doc who isn't going anwyhere!! From reading through some of your posts, I discovered the website for cancer survivors and found that there is a long term follow up clinic about 3 hours away. I am starting to think it would be a good idea to try and get a referral to be seen there since they would be familiar with what they are looking for in a HD survivor! Anyway, sorry I seem to have gotten long winded, but it was great to find that I am not the only person who is struggling years after I thought I had won the war!!

Late Term Effects
Carolina Grl,

If for nothing less than peace of mind, you should return to seeing doctors who specialize in late effects. #1 fatigue is probably one of the most underated, and common side effects and 100% real. But nearly everyone in our lives will not "respect" that because we should be past our cancer long by now and it should have nothing to do with it. But then you get told by someone who knows, like a doctor from a late effects clinic, and it becomes very real.

You don't state what chemo regimen you went through, but rads are enough to induce late effects, and then certain chemo drugs may impact also. Make an appointment as soon as you can, and then if possible, start obtaining ALL of your records pertaining to your case from day one. Treatments, especially dosages, can assist in what areas to look at as far as late effects.

You might also look into these:

www.acor.org (look under mailing lists, then, "L", then LT-Survivors)
Cancer Survivor's Project
Childrens' Oncology Group

These three things will give you general direction and hopefully help.

Paul E (Hodgkoid2003)
staring down my 20th year in less than 2 months

Bonebrake

hodgkoid2003 said:

Late Term Effects
Carolina Grl,

If for nothing less than peace of mind, you should return to seeing doctors who specialize in late effects. #1 fatigue is probably one of the most underated, and common side effects and 100% real. But nearly everyone in our lives will not "respect" that because we should be past our cancer long by now and it should have nothing to do with it. But then you get told by someone who knows, like a doctor from a late effects clinic, and it becomes very real.

You don't state what chemo regimen you went through, but rads are enough to induce late effects, and then certain chemo drugs may impact also. Make an appointment as soon as you can, and then if possible, start obtaining ALL of your records pertaining to your case from day one. Treatments, especially dosages, can assist in what areas to look at as far as late effects.

You might also look into these:

www.acor.org (look under mailing lists, then, "L", then LT-Survivors)
Cancer Survivor's Project
Childrens' Oncology Group

These three things will give you general direction and hopefully help.

Paul E (Hodgkoid2003)
staring down my 20th year in less than 2 months

35 Year Hodgkin's Disease Survivor
I was diagnosed with Hodgkin's disease - Stage II - in 1974 (at the age of 10). I had my spleen removed pursuant to staging (clear). I was treated with high-dose radiation to my upper body with lead blocks placed over my lungs and brain. In 1991, I had my thyroid removed due to a pre-cancerous cyst. Three years ago, I was diagnosed with a heart murmur. Two weeks ago, I had a stress test and cardiac cath. and I am scheduled to have my aortic valve replaced with a mechanical valve and I will receive a three artery bypass. I lost several inches in height and have chronic muscle/nerve pain, connective tissue discomfort,and suffer from dry mouth.

I have been married for twenty-three years, have three healthy natural children, and have worked full-time as a city manager and attorney in Illinois. During most of my career, I have taken few sick days, enjoy wilderness camping, consider myself in good health, take only ibuprofen for pain management, and am happy to be alive.

Over the years, I have had to "educate" doctors about my health conditions, and risks. Only recently (last 10 years) have I been able to find relevant information about survivor issues, and I had no idea that my radiation would cause heart valve problems. I look forward to hearing from you concerning your survivorship. Sincerely, Bruce

Bagohammers

hodgkoid2003 said:

Late Term Effects
Carolina Grl,

If for nothing less than peace of mind, you should return to seeing doctors who specialize in late effects. #1 fatigue is probably one of the most underated, and common side effects and 100% real. But nearly everyone in our lives will not "respect" that because we should be past our cancer long by now and it should have nothing to do with it. But then you get told by someone who knows, like a doctor from a late effects clinic, and it becomes very real.

You don't state what chemo regimen you went through, but rads are enough to induce late effects, and then certain chemo drugs may impact also. Make an appointment as soon as you can, and then if possible, start obtaining ALL of your records pertaining to your case from day one. Treatments, especially dosages, can assist in what areas to look at as far as late effects.

You might also look into these:

www.acor.org (look under mailing lists, then, "L", then LT-Survivors)
Cancer Survivor's Project
Childrens' Oncology Group

These three things will give you general direction and hopefully help.

Paul E (Hodgkoid2003)
staring down my 20th year in less than 2 months

Late effects - heart issues, chemo brain et al.
Hi everyone,

I too am a Hodgkins survivor 16 years on - Stage 3B mediastinal, and had 6 months ABVD and 20 rounds upper body radiation, earlobes to bottom of ribcage in 1993.

I was simultaneously gratified and somewhat worried while reading about everyone's long term effects listed here... Some of your complaints sound ominously familiar! Particularly, I have been wondering about the whole heart/lung damage issue. I had some significant scarring in my lungs from the radiation, and have always assumed up to now that the stiffness I feel in my rib cage just left of centre was due to that. However, recently we did some hiking in the Alps, and I was having serious chestpains after relatively little strenuous activity. As I also had a fair degree of reflux, I figured it was gastro related - not unreasonable, as each day we had a substantial brekkie, then fastened on a backpack with belt cinched below the diaphragm, and then it was all uphill from there! However, after reading your story, Paul, I think I'd better get me to a cardiologist. I had some heart function tests after my radiation years ago, and was told at the time that one of the chambers of my heart was functioning at 60% of capacity then, but no doctor was willing to tell me whether that meant that I should therefore do more, or less, exercise as a result. However, I suppose it can only help to get updated info.

My main question, however, is whom among you are suffering from substantial cognitive impairment ie chemo brain? I am happy that doctors and researchers are finally giving credence to the existence of said effects, but it somewhat annoys me that most of the data comes from breast cancer patients, as if it only occurs in these patients (yes I know that they form the best documented survivors group, hence the research... but still!). Additionally, most articles imply that it is a short term effect that is strongest during and directly after chemotherapy. My own situation is just the opposite. Directly after chemo, I noticed a rather specific memory impairment... I could no longer memorize piano pieces. As I child, I couldn't avoid memorizing when practicing, but suddenly, regardless of how much I practiced, nothing went in any more. This was annoying but not debilitating. However, over the years I swear my brain is getting worse and worse. As I teenager I used to win math awards, and went on to study engineering. Now, I am literally incapable of adding two 2-digit numbers in my head, as I can not simultaneously retain the two numbers, and the interim results from adding the first column, in my memory. I am a professional classical musician (fortunately, we always have the music in front of us , but find I can't contribute to conversations with my colleagues when they talk about concerts we did last month or last year, because I no longer remember where we performed, who participated, or what we sang. Ditto for talking about great books, or movies. I also read constantly, but have had to come to terms with enjoying what I read 'in the present', as I often have forgotten who the characters are midway through the book, let alone where the plot was heading. I tend to read on, and assume it will eventually become clear, but often it doesn't.

That's just a small snapshot, but I would like to know that I'm not alone with this amongst the Hodgkins survivors. I've recently considered trying Modafinil to combat these effects. Has anyone had success with this, and if so, in what dosage?

Thanks for all the great info so far.

Melissa

sassemink

Bagohammers said:

Late effects - heart issues, chemo brain et al.
Hi everyone,

I too am a Hodgkins survivor 16 years on - Stage 3B mediastinal, and had 6 months ABVD and 20 rounds upper body radiation, earlobes to bottom of ribcage in 1993.

I was simultaneously gratified and somewhat worried while reading about everyone's long term effects listed here... Some of your complaints sound ominously familiar! Particularly, I have been wondering about the whole heart/lung damage issue. I had some significant scarring in my lungs from the radiation, and have always assumed up to now that the stiffness I feel in my rib cage just left of centre was due to that. However, recently we did some hiking in the Alps, and I was having serious chestpains after relatively little strenuous activity. As I also had a fair degree of reflux, I figured it was gastro related - not unreasonable, as each day we had a substantial brekkie, then fastened on a backpack with belt cinched below the diaphragm, and then it was all uphill from there! However, after reading your story, Paul, I think I'd better get me to a cardiologist. I had some heart function tests after my radiation years ago, and was told at the time that one of the chambers of my heart was functioning at 60% of capacity then, but no doctor was willing to tell me whether that meant that I should therefore do more, or less, exercise as a result. However, I suppose it can only help to get updated info.

My main question, however, is whom among you are suffering from substantial cognitive impairment ie chemo brain? I am happy that doctors and researchers are finally giving credence to the existence of said effects, but it somewhat annoys me that most of the data comes from breast cancer patients, as if it only occurs in these patients (yes I know that they form the best documented survivors group, hence the research... but still!). Additionally, most articles imply that it is a short term effect that is strongest during and directly after chemotherapy. My own situation is just the opposite. Directly after chemo, I noticed a rather specific memory impairment... I could no longer memorize piano pieces. As I child, I couldn't avoid memorizing when practicing, but suddenly, regardless of how much I practiced, nothing went in any more. This was annoying but not debilitating. However, over the years I swear my brain is getting worse and worse. As I teenager I used to win math awards, and went on to study engineering. Now, I am literally incapable of adding two 2-digit numbers in my head, as I can not simultaneously retain the two numbers, and the interim results from adding the first column, in my memory. I am a professional classical musician (fortunately, we always have the music in front of us , but find I can't contribute to conversations with my colleagues when they talk about concerts we did last month or last year, because I no longer remember where we performed, who participated, or what we sang. Ditto for talking about great books, or movies. I also read constantly, but have had to come to terms with enjoying what I read 'in the present', as I often have forgotten who the characters are midway through the book, let alone where the plot was heading. I tend to read on, and assume it will eventually become clear, but often it doesn't.

That's just a small snapshot, but I would like to know that I'm not alone with this amongst the Hodgkins survivors. I've recently considered trying Modafinil to combat these effects. Has anyone had success with this, and if so, in what dosage?

Thanks for all the great info so far.

Melissa

the math thing...you hit it
the math thing...you hit it right on the head. i am a first grade teacher. math is my PASSION as a teacher...and it is frustrating as hades that i can't do "sums" in my head like i once could...

mariabh

long term side effects
Hi,
I am fifty one years old and was diagnosed with Hodgekins Disease, mediastinal tumor, in 1982. I was twenty three. I had mantle and abdominal radiation (70% of my lungs and 90% of my lungs were radiated) and had my spleen removed. Since then I have had a double mastectomy after learning about the risk of breast cancer related to radiating the chest at a young age. I also take Synthroid since my thyroid is shot and get the pneumovax every five years.

I just discovered a friend of mine with a similar history died suddenly and this is really freaking me out. I am not sure, but assume it was a heart attack. My blood pressure is good, my cholesterol is normal, but I am menopausal and so the estrogen that has been protecting my heart is no longer there. Also, in the past few months I have experienced odd episodes of tightness in my chest and feeling oxygen deprived even though I my lungs are fully expanded.
I also have frequent choking episodes, usually with water, but ofter with other things as well.

I guess I always imagined that the whole thing was behind me and now am beginning to realize that my later years may be when I deal with side effects more than ever. It is a strange experience to be confronted with my past health issues in this way.

Nevertheless, I am grateful for thirty years (almost)post diagnosis and for being given the opportunity to worry about long term side effects. I have outlived many of those I knew with the same diagnosis.

I use meditation as a way of managing stress and it has helped with blood pressure as well. Anybody out there using meditation or yoga? I find that Namaste yoga really helps with my energy level if I do it daily. It is the only thing that has made any difference.

So glad to know there is support and understanding out there.

Maria

marsby

late effect doctors

Hodgkoid 2003

Hello. My husband was diagnosed with Hodgkin's in 1997. He relapsed, etc and is here today with all kinds of issues. His oncologist retired in the process and the new one is not up to speed. Now, he needs to be evaluated for a relapse and we are sending records to MSK in NY and another specialist in NJ. I noticed you mentioned your late effect doctor at MSK and was wondering if you could share that information.

Thank you

bluerose

Thank you
Sounds like you have been on an interesting journey of research. I would appreciate seeing the info you are referring to. I have been to a good Memory Clinic here where they deal with Altzheimers and demention and the neurologist who tested me said that they were now seeing chemobrain in patients similar to me who have had both chemo and rads to the head. I felt quite validated by that, it was thorough testing except I haven't had the brain scan yet but he felt he had a good handle on what it would show based on others like me.

I still wouldn't mind seeing those references you have though, can you post them on here, I'm sure others would be interested too. I actually spoke to the Lance Armstrong Late Effects clinic at Dana Farber, to a good nurse practioner there, and they said to send them some medical records to have a look at but I haven't had the energy to gather them as they go back so long.

Thanks for the info and I will look forward to seeing those resources. Actually the chatroom on this site is down indefinitely and we have gathered in a good chatroom on a site that is based out of our big cancer hospital here in Canada called Princess Margaret Hospital in Toronto. Not only can you chat there,as many of the CSN chatters are now, but they have scheduled meetings with many specialists at the hospital and you can read about them on the first page of the site which is called Caring Voices. Cancer is cancer no matter where you are in the world so most topics concern all survivors. We have one now and again talking about our health care system but that's only once a month or so. They have chats with radiation nurses/ cheomo nurses, open chat about whatever needs to be discussed by chatters and an oncologist is available now and again to talk about cancer issues. Try and drop by, register with the site and you will see the schedule with topics for the meetings. You are free to ask questions in the meetings on the topic being discussed that particular time. Try and attend, I think you will find it interesting.

Take care, Bluerose

cathyp

marsby said:

late effect doctors

Hodgkoid 2003

Hello. My husband was diagnosed with Hodgkin's in 1997. He relapsed, etc and is here today with all kinds of issues. His oncologist retired in the process and the new one is not up to speed. Now, he needs to be evaluated for a relapse and we are sending records to MSK in NY and another specialist in NJ. I noticed you mentioned your late effect doctor at MSK and was wondering if you could share that information.

Thank you

Late Effect Specialist
I just had my first appointment at MSKCC in NYC. It was very happy with my experience. I happened to see Dr Oeffinger but they have additional doctors in that clinic. I looked up the information on MSK web site and called for an appointmemt after I read of Hodgkoid 2003's experience. If you have questions, just call them, they are so very helpful. Good Luck

HD 1989, 1994
Breast Cancer 2008
Cardiac Issues

bluerose

Online with a famous oncologist & other cancer professionals
Hey Paul,

I don't know if you ever got into chat on this site but I have and for the last while our chatroom on CSN has been down so we were forced to relocate to another survivor site. I belonged to another site that originates from our big cancer hospital here in Canada which is Princess Margaret Hospital in Toronto and actually my radiation protocol was created there years back. Anywho they have a good chatroom so CSN chatters go there now.

Reason I am telling you this is because a big feature of the site in Canada, which is called Caring Voices by the way, is that they hold scheduled meetings with professionals from PMH who come on and discuss subject matter relating to cancer. Professionals who hold those meetings from the hospital are social workers, radiation techs, nurses, and a famous oncologist Dr. Rob Buchman who has written books on cancer you might know. One of them is called "Cancer is a Word, not a sentence'. He holds a meeting on this subject on the Caring Voices site I believe once a month, he just held one a week or so ago but will again. Now the topic is about the title of his book but I think it might be interesting if you planned to attend the next meeting with him in the room (the meetings are an hour) and maybe ask him about some of the questions you still have like chemobrain etc.

This is the website where we are chatting now with CSN down as I mentioned before, and where you can find more info on the meetings run through PMH:

http://www.caringvoices.ca/en/

We meet there in the General Cancer Chat Lobby.

Cancer is cancer no matter what the country and most meetings apply to anyone including caregivers and some to various forms of cancer and the only one specific to Canada is when they discuss our medical system and drug plans but that's just once a month.

So Paul, if you are interested come to the site and register and then look around at the meetings that are coming up and if you go to one meeting that describes what that meeting is about on the home page of that site it will say More..... Click on that and it will take you to a monthly schedule of meetings and you will find Buckman's meeting there. Also they have meetings on the effects of radiation and chemo is a separate one too, side effects, those might be of help as well.

Hope to see you there Paul. A free hour with specialists from a world class cancer hospital, cool stuff. There are usually only 2 or 3 others in those meetings so you will get lots of opportunities to chat with the docs and other professionals personally about the subjects at hand.

Take care, Bluerose

MTHOM

HD Diagnosed 1993

I am a survivor of 28 years, diagnosed in 1993 HD Stage 2B.  I had my spleen removed & high doses of RT to jaw & chest areas. 

Maybe a year after finishing RT I developed hypothyroidism due to the RT killing my thyroid.

Diagnosed 2 years ago (2019) with breast cancer caused by the RT. 

I have acid-reflux that started years back, but I am learning now it was probably caused by the RT. 

Recently having shortness of breath, doctors say it's pulmonary fibrosis caused by the RT to the chest. 

I am looking for fellow long term survivors.  [Content edited by CSN Support Team]

I really look forward to being in contact with someone that has been through this. 

ShadyGuy

You ...

may want to start a new thread as this one is more than 12 years old. I think you would be more likely to receive responses if you do that.

viola43

Long term effects

Mythom,

I was diagnosed 2 years after you (1995) and have many of the same long term effects following radiation to neck, chest, and abdomen. My neck issues started 10 years ago and I wear a neck support most of the time. The thyroid issue is treated effectively with medication.  I also have long standing severe reflux issues, made worse by radiation. it's in the last 2 years I have have encountered lung and heart disease and am now taking quite a bit of medication but am managing ok. since I was older when I was treated, breast ca is not an issue yet. The hardest part of all this is trying to anticipate what's next?  I understand your worries. Have you been to a long term effects clinic like Sloan Kettering?. They docs there (now gone) helped me so much negotiating the Hodgkin road and I am forever grateful. Hodgkin International is a wonderful organization bringing long term lymphoma survivors together. Please feel free to reach out.

Viola43

GreenTeaTree

Long Term Effects

Hello!  I went through Hodgkins Lymphoma in 2000 - 9 months of chemo and radiation.  I am the first to survive any type of cancer on either side of my family.  I was 21 at the time and totally felt invincible.  Now that I'm older and have a family of my own and am a bit wiser, I'm starting to worry about long-term side effects of treatment.  I've read through a lot of the posts in this string and found them very interesting and I will have to look up a Long Term Effects Clinic near me.  I'm finding comfort that I am not alone in my fears about long term effects of treatment.  Recently I have had some chest pain and my docs have attributed it to anxiety, but now I'm wondering if it has more to do with long term effects of my cancer.  It looks like from others posts, that this is a common occurance.  I guess it's time to ask my doc about doing some more check ups?  I often feel silly asking - I've moved away from where I had treatment and my current oncologist kinda makes me feel like a crazy person when I reach out.  Anyone else experience this?  I know I need to be proactive, but I feel kind of alone.  Would one of the Long Term Effects Clinics be able to help?  (I live in Colorado)  Anyway, I'd love to be in a support group to connect with others in the same boat but also don't know where to look for those.  Hope everyone is well.  Glad I could share.  GreenTeaTree