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Long Term Survivorship Issues

hodgkoid2003's picture
hodgkoid2003
Posts: 94
Joined: Apr 2009

Blue Roses (and everyone else),

I spent all day yesterday at Sloan Kettering with my late effect doc. Now as I recall from the last visit with him, the mention of "chemo brain" brought out a response of not really with survivors, but rather with those during treatments. Now, I can tell you that as far back as 10 years ago, I remember reading literature about chemo brain, so I thought this was odd.

But, since my heart surgery last year, and last visit with MSK, I've learned how other body functions affect how the brain works. And that includes the simplest of tasks, breathing. Certain breathing patterns can affect the oxygen to the brain from too shallow a breath, to too deep, to too rapid and such. Heart rate, blood pressure, and even meds can have an impact.

The thing that I have learned from these two visits with the doc at Sloan, was exactly how the radiation and chemo not only could affect me, but has affected me. And to listen to him, there is truly an advantage to dealing with someone in late effects.

Though I know you are from Canada, the doc threw out a somewhat disheartening statistic, and perhaps the % could apply up north, or across the pond. The US has over 300,000 long term survivors out of over 300 million people. So, you can see how rare we are.

Last year, there was a television program called "Stand Up" which was committed to cancer. They did give a small blurp to survivors, but no where near what is needed.

On a personal note, prior to seeing the late effects doc, I knew I had thyroid issues, hair loss (from rads), infertile and then found out about my heart. Well, after more tests, I have pulmonary restrictive disease, concerns with the lower left compartment of my heart, beginning stages of oeseoperosis in my spine(from the prednisone of my treatment), some muscle loss and something that was referred to as radiation-induce fibrosis (still getting familiar with that one). I've got a bit of drooping head from muscle loss in my neck.

I personally know so many who have been dealing with just as severe or worse symptoms. I am relatively new to this stage, but unlike my first appointment, I was much more at east because of the amount of time that was spent with me actually explaining.

BlueRoses, I am several email lists. Where in Canada are you located? I would be willing to tap into those lists for any fellow Canadians that could offer you some direction to find someone who will believe you. I will tell you that I believe you. I also believe that if you believe, then you should push. Don't like the answer, push further and harder.
What other concerns do you have? There are certain guidelines that have been established to follow up on us. And it should not be unheard of to ask your family physician to order tests like nuclear stress tests and such. Depending on when and how much treatment you received, could show some sort of effects, and then you can go from there.

It was over 19 years ago, I was told I was done being treated for Hodkgin's Disease, but today, to the day, a year ago, I woke up in ICU with a life-saving double bypass. So, along with learning to deal with emotions I felt I never had, I am learning so much about what has happened, what could happen, and how to manage all of it.

Paul E. (Hodgkoid2003)

Fran-HD
Posts: 12
Joined: Mar 2009

Paul I enjoyed reading your latest post. I have learned so much over the past few months about long term effects. I got the link to long term effect clinics and went on it. I am in Georgia and there was one listed in Atlanta but the number has been disconnected so am trying to track it down another way.
I bought Keenes survivorship book and have read several sections. It is a great book. There is so much that I did not know but my eyes have been opened now. It talks about knowing how much treatment you received. I do not think that still exists for me. It was 30 years ago and the information does not exist anymore. My parents were not savy enough to get and keep that information for me.
I am going to try and figure out how to get to a long term effect clinic becuase I think it would be great to have input from someone who knows what to look for. I am surprised that I do not have any heart problems with all the info I have seen on that but I am glad I do not. It is bad enough that my esophagus has stopped working and am having a lot of eating issues and they say it is radiation related.
I am being schedules for IVIG in the next week or so. Have you or anyone else had it before. Am kind of anxious about possible side effects. They are trying to give my system a boost to see if it will improve muscle activity and get the esophagus to work.

hodgkoid2003's picture
hodgkoid2003
Posts: 94
Joined: Apr 2009

Fran,
I have read, and read, and re-read this last post from you. And between my two visits at Sloan Kettering, and the book... and this is hard for me to say, because in all my years of counseling cancer patients, not once did I ever give medical advice. But, if they feel your esophagus issue is radiation-related, wouldn't it only make sense for them to research more before going the treatment round with you. For instance, my doctor at Sloan specializes in Hodgkin's and its late effects. And explains everything to me in very plain terms about the why's, the what to do's, and so on.
I'm a big believe in the "can't hurt" approach. But if it is possible, try to reach out to Dr. Oeffinger at Sloan Kettering or Dr. Steven Hancock at Stanford U. Though not their patient, there is a possibility that they might be able to shed some light on your situation. Or if you're not able to, push for your doctor to do it.
The problem is that there are so few survivors of cancers, let alone those who live long enough to develop late side effects, but there are even fewer doctors who are knowledgable to deal with them.
Knowing the worst that could happen is that you can't get an answer simply because you're not being seen by them, best case scenario is that your doctor could just get the education he needs to deal with you as mine has. And knowing the worst and best, makes it more possible to deal with everything in between.
Fran, I have been reluctant to reveal everything that has been discussed about all my side effect because I don't want anyone overwhelmed. But you know what, I am actually okay with everything I've been told, because I'm convinced that at the very worst, they will help me at least manage them and that prevents a lot of fear. In fact, it is more of a confidence that I have that as the doctor put it "my goal is to see that your daughters get to see you become a grandfather". Hopefully that means like 25 to 30 years from now.
Fran, if you'd like more info, please email me your email address and I will give you more of an explaination. But if ultimately you must go through the IVIG, then I truly wish you the best. I have no idea what that treatment is or does. If the radiation weren't a factor, in other words, and average person, maybe not a big deal. But as my GP puts it "our cancer history..." Please keep me posted on how you make out.

Paul E. (Hodgkoid)

Fran-HD
Posts: 12
Joined: Mar 2009

Paul if you have any other information my email is frgwn@knology.net. I have looked up Dr. Hancock so I think I might shoot him an email and see what he says. I am very concerned about the esophagus issue because it seems to be getting worse and all my docs are just seeming to stab in the dark about what to do. I have seen a speech therapist for swallowing information and am waiting for a referral to nutrition to help put the speech recommendations into ideas about maintaining nutrition and calorie intake.
Thanks
Fran

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hope this post finds you having a good day.

I just wanted to ask you if you are sure that your records from 30 years ago are not around somewhere or are you just assuming it was too long ago? During all my treatments which were 20 years ago I was so caught up in survival mode I didn't even think to ask for my records but I am recalling them now from the hospitals so hopefully will have them soon. The girl in the records department here at one of the hospitals said that since it was so long ago some might be on microfilm and other records on other forms but they have them. I would be very surprised if where you were treated has no records at all. I would ask someone who heads up the hospital where you were treated how to get your back records and I bet you will find them. Even if they have to go rooting around in a dusty hospital record archive I would be stunned if they weren't there.

All the best with your upcoming tests, you are in my prayers. Blessings, Blueroses.

bbbdirector
Posts: 2
Joined: Dec 2009

I am new to this site. I was treated for Hodgkins IIIB (lympocyte depleted) in 1977. My spleen was removed during the staging process and I received radiation and chemo (MOPP). I was in my mid 20s - I am now 57 and have been having serious problems with my heart for the past few years. I was hospitalized for 10 days about 4 years ago with pneumonia and fluid build up in my lungs. During the past 30 years, recovering from colds has been a major problem. Since then, I have developed asthma. I am in the midst of a cold right now and I am not at home - so I am dreading having to go an emergency room.

I am writing to ask for the link to Long Term Effects Clinics. I am looking for one in the DC area and in Mississippi.

hodgkoid2003's picture
hodgkoid2003
Posts: 94
Joined: Apr 2009

You can try this:

http://www.cancersurvivorsproject.org/index.html

or go to the long term survivor's support list on:

www.acor.org

Paul E (Hodgkoid2003)

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

So sorry for the delay in this response but this site stopped alerting in email as to new posts and I lost track of the one I made in this site so just stumbled on your reply now. I have a new email address so will send that to you privately if that's okay.

Sure is refreshing to hear back up from long term survivors. I am lucky to have a GP who has been with me for the last 25 years and backs me up but when push comes to shove it's the specialists who have the final word and as I said before some are less than knowledgeable about our plights. I would love to receive some info from you if would be kind enough to send it to me, or post it here, whichever you like. I have spoken to the Lance Armstrong Adult Onset Cancer Clinic and they have sent me a couple of documents but need my full medical treatment protocols to know just what specifically to advise and since I didn't keep copies of everything it's going to take forever to gather it all I'm sure.

The part that is so hard for me is when docs, because of poorly informed specialists, start looking at anxiety or depression instead of the root cause of the physical issues I am presenting with, just throw a pie at it and say the symptoms are due to stress. Oh ya I am stressed alright but it isn't the root cause of the symptoms it's BESIDES the symptoms due to this kind of archaic attitude. Yesterday I struggled to make it out to shop for summer shoes, got out but was nearly crippled coming back by my back pain that is worsening daily it seems - and that is on morphine daily. That really scares me because I feel as if a wheelchair is close at hand. I was nauseous waiting for the taxi which seemed days in coming as always happens when one isn't feeling well. I made it but just barely. I have a sitting area in the front lobby of my building and had to rest there before I made it back upstairs to my apartment. When that kind of thing happens I curse the docs who says the pain is 'stress'. Why would docs put me on morphine if they didn't think there was a physical reason? They found arthritis and lower back disc degeneration in my lower back but this one 'rheumatololgist' did no xrays to confirm or not but decided it was stress. Just a sin for this kind of 'consult' to occur.

You know what I feel like sometimes? I feel like a war vet. I too waged a war with my body through cancer treatments, suffered the trauma physically and emotionally, and now I suffer the results of harsh treatments but am left untreated by those who I thought would be there for me to help me along the way, like some of the war vets are abandoned who suffer from their wounds. Maybe the analogy is too strong but it feels like that to me sometimes.

I can believe that there are too few of us to validate to the masses of docs but the number is growing as treatments get better and more successful and one day all of this will just be a given - treatments can result in major damage. Hopefully treatments will get so much better that there will be no damage then the clammering for validation will subside.

I read with interest all the things you were going through and most of it is on my plate as well. Take care Paul and thanks for your post. All the best, Blueroses.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I forgot to respond to your first paragraph about 'chemo brain'. I have had some worsening memory and cognitive issues of late so have actually had some testing at a memory clinic here in my city. The results won't be in til the end of this month and I still have to have a CT head scan too before that time. Should be interesting.

One thing I found validating, and a little disturbing at the same time, was that when I first went in for initial testing those running the tests said that they have seen the same kind of issues I am displaying with other long term survivors who have been through treatments. We will see what the results say and I will keep you posted. Blessings, Blueroses.

hodgkoid2003's picture
hodgkoid2003
Posts: 94
Joined: Apr 2009

On the issue of "chemo brain":

Back in the late 90's, I learned of this term and actually read articles where supposedly there was credibility to this term. It was a condition that came about, around 10 years or so following chemo. It was a forgetfullness. And being a married male, it became a "get out of jail free card" to a wife who got irritated with me forgetting things, or failing to see obvious things that she felt needed to be done.

Fast forward 10 years, and after meeting with whom I consider an expert in Hodgkin's, its treatments, and yes, late effects, he has explained to me, that chemo brain is really something that happens during treatments, not after.

The joke with my family physician, is that the only time that she ever saw me in our 20 years, was if I had a limb falling off. She didn't see me for sniffles, aches and such. She came to my doctor's practice just as I was completing my treatments. Quite a contrast from my mother who also saw her, who had this doctor on speed dial and would call her for an eyelash laying on her pillow.

I've had what I consider minor lasting side effects from my rads and chemo. But last year, I became aware of so much more, admittedly more than I wanted. And there is, and will be a fine line, between recognizing what is actually wrong, going wrong, and what is just in my head. I learned the hard way last year, making a phone call that I normally would not have about a frequent tightness in my chest. My reputation with my doctor made this a no-brainer for her, order a nuclear stress test. She had no idea what was going to be diagnosed. And even after it was discovered that the artery had been so badly damaged from radiation, and with my knowledge of others with late effects, she still didn't necessarily buy into it.

My doctor got a phone call, and letters from Sloan Kettering explaining my situation in detail. And it wasn't just about me, but about late effects from treatments especially from Hodgkin's. Today, she has made it clear, and to my knowledge, I am her only Hodgkin's patient/survivor that she is there for me. My file is clearly marked that if I call, or if any medical personnel phone her, she is to be called immediately. It has been explained to her what needs to be done with me, especially not having a spleen (another post). My doctor is young, and knows that there are things about this that can be overwhelming for her. But, and this is huge, though she is not the late effects expert, I know that she is my advocate.

I must differentiate the difference between a palpitation and a racing and hard heartbeat. I must recognize when I don't stretch that could be why my back aches and not the osteopenia. I need to learn why I am short of breath frequently, which could be my lungs, or my heart. I need to learn, as my late effects doc told me, that it is okay (and expected), that I get fatigued and that I am not being lazy.

And then that's where message boards and support lists come in. Because that's where we find out we are not alone. There are many of us.

Paul E. (Hodgkoid2003)

KariAnn
Posts: 1
Joined: Oct 2009

I am a 5 year HD survivor who has late effect neurological and cognitive disabilities due to my cancer treatment. It is very frustrating that not more research has been done to prove that this is an issue for many of us. My regular oncologist is not convinced that my treatments have caused this disability, but my body tells me otherwise. I am a very educated woman and know my body and I know it has drastically changed sinced treatment. I hear you loud and clear.

Kari Ann

hodgkoid2003's picture
hodgkoid2003
Posts: 94
Joined: Apr 2009

Kari Ann,

First, congrats on maknig the 5-year mark!!! For all of us, this was one of our major milestones (and they only get better).

Second, it is unfortunate that your onc is dismissing your feelings. Because, it is during the last 5 years, maybe longer, that late effects have finally been garnishing attention. In fact, as more specialists emerge, more efforts are put in to require late effects as a study during their education.

I would not despair. There are many late effect clinics located all over the US who follow the guidelines of the Children's Oncology Group for follow up care, as well as late effects. No one understands better than we do, what has/is happening to our bodies.

I "disappeared" over a decade ago, with no diligence to my care. It almost cost me my life last year. And then to find out, it was caused by my treatments for HD 20 years ago, then I was introduced to a whole new world. A world I knew existed, but just as my cancer, a world I didn't want or at the time, needed to recognize.

I rely heavily on the Long Term Survivor's list on www.acor.org. There are so many people who have been through what I have been and with doctors not being able to tell us, these survivors can tell us that we are not crazy, that things are not in our head. And it is through them, that I came to find my late effects specialist who has helped me deal with what has changed in my body all these years. I would encourage you to check out this list.

Paul E. (Hodgkoid2003)

aramance
Posts: 5
Joined: Sep 2007

Thank you, Paul for opening up about all of this. I am an 8 year survivor on Large B cell Mediastinal Lymphoma and went through very heavy-duty doses of chemo and radiation. As a 38 year old, I kept thinking I was too young to be an Alzheimer's patient or starting with senile dementia. I used to joke about Chemo Brain to my husband and friends, but I really thought it was just me. Long term side effects seem to be crawling out of the woodworks now after all this time, and I thought I was just being a hypochondriac. My gallbladder function decreased from chemo so severely that I just had it removed. The compressed disc in my neck and the shortness of breath just add to that list.

Now, with all that being said, I continue to maintain the attitude "that which doesn't kill you makes you stronger." A positive attitude and knowing that I made it through, plus a strong sense of humor about all of it keep me going.

Thanks for your words and helping keep everyone positive. Maybe those that are going through the hell of treatment now can gain inspiration and support with our words.

blessed09
Posts: 2
Joined: Oct 2009

Hi-
I am a long time survivor of Hodgkins disease. I was 16 years old . I am now 42. Where are there clinics near chicago. I am presently ununemplyed, but hope to seek good doctors out again soon.

hodgkoid2003's picture
hodgkoid2003
Posts: 94
Joined: Apr 2009

Children's Memorial has a long term survivor's program I believe.

Paul E. (Hodgkoid2003)

ablue62
Posts: 4
Joined: Dec 2009

All:
I'm new to this web community but not to Hodgkin's disease. I am 47 years old and had Hodgkin's at 14. Had mantle raditation and a bit of MOPP chemo. Was between stage 2 and 3. I feel so validated after reading of all the late effect issues folks are having. Although I've done some web research on late effects of Hodgkin's...attempting to make sense of abstracts and such...I had NO IDEA that depression and anxiety were so common and the chest pains and breathing issues. I've been tossed from pulmonologist to cardiologist for three years now to try and figure out why I'm so short of breath and have had chest pains, particularly while resting for years. Nothing really shows up on the tests (cardiac cath, echos, TEE) except that I have reduced lung function (I KNEW that). Another issue...the chronic fatigue...well...I've had it for 34 years, disabling fatigue...but have just been told I need to exercise, that "everybody" has fatigue, etc...I stopped saying anything about it because short of explaining that, "NO...I'm actually so tired many days, that I feel it will be my last day alive"...people just don't get it...unless they've been there...like you all have.

I really need a GP who REALLY understands this stuff and have gone through a few of them...I'm in St. Louis, MO...which has lots of teaching hospitals but I can't seem to find anyone really fabulous. Any help in that area would be appreciated.

You have no idea how great it is to hear from other survivors and not feel alone! Okay..well, maybe you DO :) You'll be hearing more from me.

Namaste

hodgkoid2003's picture
hodgkoid2003
Posts: 94
Joined: Apr 2009

Ablue,

First off, it means so much to see someone who has survived the HD beast for such a long time. Even this far out for me, I still look for others who have done it longer.

Perhaps you might find some answers, as well as a "late effects" clinic near you. Let me assure you, there is a big difference when you are dealing with a doctor who has studied late effects, and knows what you are talking about is real and has seen it enough.

Here are some links which will be of interest to you:

www.acor.org (go to mailing list, then look for L, then LT-Survivors)

http://www.cancersurvivorsproject.org/index.html

http://www.childrensoncologygroup.org/

Paul E. (Hodgkoid2003)

p.s. March 3, 2010 will mark 20 years for me.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Its great to see the long term survivors. I had B-Cell Lymphoma 7 years ago. I have learned to accept fatigue as part of my package. If exercise was the only issue then walking in my snowshoes for a couple miles up and down hills should of cured it. I worked for a couple years after my cancer and it was not unusual to walk 7 miles during my shift. I now require down days and naps. My wife can look at my face and see a nap coming. We can only hope that someday all doctors will be trained in the effects of cancer treatments. But I am thankful for each day I have been given anyway. Best wishes to both of you. Slickwilly

ablue62
Posts: 4
Joined: Dec 2009

Paul:

Thanks to your cancersurvivorproject link, I've found two hospitals in St. Louis with Long-Term Effects programs...I'll be calling them on Monday!

All of your blogs are so informative and serve as such an inspiration and I am so happy to be an inspiration to you also. I have lived with the "HD Beast" (yes...that's how I think of it too) for 34 years. I have a great husband (my third) a 28 year old daughter, an 18 year old son and three grandchildren. I've managed to work full-time all of these years and had been a divorced mother for most of them.

Had to have my thyroid gland removed about two years ago, had a goiter, not cancer, but it needed to come out. Have had an ovarian cyst removed...while 6 months pregnant with my son, it too, thankfully, was benign. My breathing issues and chest pains have gotten worse over the years and the fatigue...always there. I think I've just learned how to "pace" myself...I try to be good to myself, because I don't "look" disabled...people don't realize how awful I feel sometimes...and that can be frustrating...but I know how I feel...so I trust myself, listen to my body and rest when I need to.

I'm looking forward to getting to know all of you and the information on this site is incredible...I don't know how I survived this long without it!!!

Namsaste ~

Amy
HD 1976

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

Paul.
I'm anxious to find a LT Survivor Specialist in my area. I am close to Philadelphia and NYC. I looked up the clinic at Sloan under the "Cancer Survivors Project" website. They state patient eligiblity as seeing patients up to 30 years old. Do you know if this is still part of their eligiblity?
Cathy
PS; 20 years December 9, 2009!!

CarolinaGrl
Posts: 1
Joined: Jan 2010

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!!

hodgkoid2003's picture
hodgkoid2003
Posts: 94
Joined: Apr 2009

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
Posts: 7
Joined: May 2005

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
Posts: 1
Joined: Jan 2010

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
Posts: 9
Joined: Dec 2009

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
Posts: 1
Joined: Jan 2010

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
Posts: 1
Joined: Apr 2010

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

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

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's picture
bluerose
Posts: 1112
Joined: Jul 2009

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

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

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
Posts: 3
Joined: Jan 2003

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
Posts: 687
Joined: Jan 2017

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
Posts: 20
Joined: Aug 2011

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's picture
GreenTeaTree
Posts: 2
Joined: Feb 2019

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

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