Managing late effects of treatment

Ern

As far as I can tell this category has not been visited for some time. IN light of that I thought I would start another thread at risk of bad form for this site:

I am a 49 ish male who found myself here looking to understand some things going on with myself. As any story needs, a beggining:
At the age 18 I had an acute illness in which eluded diagnosis. At the time it was recognized as a fast moving metatastic process that was in my lymph nodes and lungs. My Onocoligist reached for the Cytoxan/Andriamycin cocktail. I recieved 1000mg of Cytoxan and 150mg of Andriamycin via IV on the 3-week roller coaster. 150mg of Cytoxan orally daily with the standard Prednisone. This went on for 8 eight sessions with the oral meds for another 18 months.
I survived this course of treatment and went on with my life with no re-occurence of the disease since. My doctor defined my cancer as "poorly undifferentiated" with no primary ever determined. (A side note: the only side efffect my Doctor did mention was that I would be Sterile. This was proven to be for a time but happily this did change and now I have 4 children.)
Since I have experienced cognitive and physical difficulties witch I now believe to be late effects of the chemotherapy. My experience as follows:
Chemo brain: Memory, or rather recall, was negetivly impacted the most. It is like I have a blind spot regarding information retrieval. The best analogy I can give is that it is like I know the name or piece of information is there but it is behind a door that I cannot open. Very frusterating and it seems to be getting worse with age.
Heart/Lung/muscles: I have always been physically active and enjoyed playing many activities such as ice hockey, something I only recently had to give up. Despite this I always felt that my strength and stamina were limited somehow. Earlier on I felt that I was just out of shape but that changed over time. Heart racing and irregularities, Muscle cramping (generally in my calves and arch of my feet), broken sleep and the feeling that I reached the maximum of my cardio vasculer ability were frequent. These became more frequent over time until on day when it grabbed me by the throat. I found my pulse racing about 240 beats per minute. This went on for about 45 minutes before it backed down. Subsequent exam by a Cardiologist confirmed Supra-ventriculer-tachycardia along with some complimentary Pre-atrial and pre-ventriculer contractions, with the PAC's being predominant. These episodes continued over time effecting sleep and making life miserable. After two years i opted for an exam where they go into your heart with a probe trying to get your heart to race with the idea of identifying/cutting a nerve to stop the short circuit. This worked for me in regards to greatly reducing the heart racing but did nothing to reduce the PAC's, which can be very bothersome, and limiting at times. One thing that did come out of this procedure was that I learned my lungs are 87% of what they should be, which explains alot. (I had a bad reaction to the anesthesia, subsequent lung capacity testing brought the reduced lung capacity to light.) I would recommend the heart procedure despite the risk (and radiation dose, which is significant) because the drugs available for heart arrythmias are harsh and may make the condition worse.
At this point I realize that these difficulities are not going away and I need to manage them. Through research this is what I am currently doing: (I am trying to avoid any drug therapy as long as I can) This is in addition to the usual proper diet and exercise. Exercise is great. I miss the competitive stuff but enjoy running, hiking, biking, and any activity where I control the tempo. If My heart acts up or I get too short of breath, I slow down! Simple.
I find the following dietary supplements have significantly improved my quailty of life, most notably my sleep is much better. Sleep may have been effected the most all these years, though I was not aware. I frequently would wake up with my heart racing at 90ish beats per minute and I would be somewhat short of breath:

-Quality grade fish oil (EPA/DHA). I take one that has CoQ10. This has many benifits. I would recommend reading up on them.
- L-Arginine: This is an amino-acid that fosters elasticity of your blood vessels. My heart episodes prior to taking this would roll through my body. In contrast now it is noticable but mild in comparison.
-I also take a multivitamin. This was added when the orginal form of fish oil I was taking had a "heart synergy" blend with these multi-vitamins. It has since been taken off the market.

IN conclusion, I am trying to understand what is going on and how I can best manage the late effects of chemo. I welcome any comments or sharing of information. Lastly, I hope that someone out there may benifit from my experiences. Mine seem quite mild in contrast to many of you out there.

Lastly, I apologize for any spelling mistakes, no spell check here.

soccerfreaks

After the delue
I salute you for your pro-active, information-seeking efforts to combat or at least ameliorate tbe apparent effects of long-ago cancer-treatments! And I salute you for your extended survivorship as well!

I cannot speak to your individual practices: if they are working for you, then, obviously, keep on plugging.

I CAN speak, at least minimally, however, to the essence of long term survivorship. I have been a survivor (head and neck, lung) for a relatively brief period of time (initial diagnose in September, 2005), but I have been an advocate since the beginning for what I think would be a couple of major changes to the way survivorship and the cancer experience in general are handled.

First, I would advise that every cancer team include a psychologist, psychiatrist, or otherwise-certified counsellor, FROM THE VERY BEGINNING, once a diagnosis has been confirmed, and that like the social worker and the nutritionist and the physical therapist and others who are along for the ride, depending on the nature of the disease, that this professional be there and available for as long as needed, covered by insurance.

Second, and CURE magazine (an ACS-affiliated publication that you might be able to reach online at www.curetoday.com) has written some quality stuff on this subject recently, long term survivorship should be a continuing part of the plan for success.

As is suggested in the articles I read, doctors should advise of possible long-term effects of ALL treatments, so that they do not come as a surprise to you (or other doctors) if and as they occur, and so that you can be pro-active in taking measures that might eliminate or alleviate them. (I suppose that doctors may be reticent in this regard, as they do not seem fond of the idea of generating self-fulfilling prophesies.)

It means that you and your doctor, before parting ways, develop a written plan for what you need to do in the future, and when.

And it means that more research needs to be dedicated to discover WHAT exactly the long-term effects of various treatments are, so that we can be considered seriously when we do have complaints and issues such as the ones you describe.

Hopping off of that soapbox, let me advise, re the Chemo Brain, that it is now understood to be a very real phenomenon, although there is apparently still some dispute as to how long it lasts. I am coming around to believing that it CAN last for quite an extended period of time, as you are apparently confirming.

In any event, good luck to you, and welcome to the community!

Take care,

Joe

slickwilly

late effects
Hi Ern. I would imagine that 30 years ago they threw everything in the book at you. There was so much to learn about cancer treatments at the time. Even today it seems every study you see is based on 5 years. But we see so many side effects coming at us later in life that its frustrating when we try to get answers. Some like me end up on disability as their bodies fall apart and we have struggle through that system with a bunch of unknown or unproven problems related to cancer treatment. And we all deal with family and friends that just don't understand why we are not the same person we were just a few months ago. I admire your ability to adapt and try to have as much of your normal life as possible. I have had to change 90% of my life but I don't quit trying to do things even if they are painful at times. After my treatments for NHL in my face I found my lungs had taken a beating. Over time it got better, but I still find myself taking 2 quick breaths at times. Almost like a hiccup. The brain with answers hidden behind doors analogy is great. And its quite frustrating at times. I guess the worst thing is forgetting to turn off the stove or remembering I have something cooking. Thank God for smoke detectors ha ha. Or the occasional time I forget my dog is outside and its raining. But I keep trying to work my brain by doing crossword puzzles and thinking through answers. It does help a bunch. I suspect others on this site will talk about the heart related problems and chemo. I know my heart was tested on a regular basis during my treatments and so far it seems to be ok. I completly agree with you about drug use if things can be managed another way. The side effects are just something else added to the pile we are dealing with already. And I suspect your fighting the "pile syndrome". We have treatments and beat cancer only to have one thing on top of another pile up on us. And not being able to fix anything is frustrating. My example is a brain tumor, facial nerve damage, saliva and taste bud loss. Half a working sinus. A ruptured disc, torn knee legiment and a spine full of arthritis that is cutting off nerves. I proubly forgot a few things as my pile is so high I tend to not think about it. Its a depressing hole that takes me quite a while to climb back out of. But we adjust and try to live life the best we can and I think you are doing that. Best of luck Slickwilly

Eil4186

Well, you are a strong
Well, you are a strong person indeed to have gone trough so much and still be positive. As if the treatments aren't bad enough we have to deal with side effects for years. I can relate to some of your ailments. I have calf and foot cramps, chemo brain and I (and others) have noticed that I now stutter. Not all the time, and its more like verbal blind spots. I just stop mid-sentence and my mind goes blank and my mouth seems to be frozen. Its weird and has started gradually over a year or so after chemo. I have never asked my docs about it because I don't wan't to bother them and besides it doesn't ever happen when I'm there.

I feel for you and all you have been through. Cancer truly changes our lives forever. Its hard to accept but we all have to keep plugging away and try and make the most of life.

Hang in there, Eil

Ern

soccerfreaks said:

After the delue
I salute you for your pro-active, information-seeking efforts to combat or at least ameliorate tbe apparent effects of long-ago cancer-treatments! And I salute you for your extended survivorship as well!

I cannot speak to your individual practices: if they are working for you, then, obviously, keep on plugging.

I CAN speak, at least minimally, however, to the essence of long term survivorship. I have been a survivor (head and neck, lung) for a relatively brief period of time (initial diagnose in September, 2005), but I have been an advocate since the beginning for what I think would be a couple of major changes to the way survivorship and the cancer experience in general are handled.

First, I would advise that every cancer team include a psychologist, psychiatrist, or otherwise-certified counsellor, FROM THE VERY BEGINNING, once a diagnosis has been confirmed, and that like the social worker and the nutritionist and the physical therapist and others who are along for the ride, depending on the nature of the disease, that this professional be there and available for as long as needed, covered by insurance.

Second, and CURE magazine (an ACS-affiliated publication that you might be able to reach online at www.curetoday.com) has written some quality stuff on this subject recently, long term survivorship should be a continuing part of the plan for success.

As is suggested in the articles I read, doctors should advise of possible long-term effects of ALL treatments, so that they do not come as a surprise to you (or other doctors) if and as they occur, and so that you can be pro-active in taking measures that might eliminate or alleviate them. (I suppose that doctors may be reticent in this regard, as they do not seem fond of the idea of generating self-fulfilling prophesies.)

It means that you and your doctor, before parting ways, develop a written plan for what you need to do in the future, and when.

And it means that more research needs to be dedicated to discover WHAT exactly the long-term effects of various treatments are, so that we can be considered seriously when we do have complaints and issues such as the ones you describe.

Hopping off of that soapbox, let me advise, re the Chemo Brain, that it is now understood to be a very real phenomenon, although there is apparently still some dispute as to how long it lasts. I am coming around to believing that it CAN last for quite an extended period of time, as you are apparently confirming.

In any event, good luck to you, and welcome to the community!

Take care,

Joe

Thanks
I want to thank you for the wisdom or your reply. I am truly humbled by all you have been through. The wholistic criteria for the doctor/patient relationship and treatment is really on the mark. A sign of one who has truly been through the mill.
It does show haw far things have come, thank God, since the fall of 1977. At the time I could tell that the Doctor did not think I was going to make it just by how I was treated. (My Parents told me not long ago that they gave me six months at the time. A conscious decision on their part, also one on mine not to ask!) My treatment at the time was strictly chemo. After that I was on my own. I do remember the social impact it had at the time. I would clear the room any where I went. "Friends" would cross the street to avoid me. I must admit I started doing the same. I hope things are better in the world at large for you.

Gotta go. Question: What is the protocol for gettin on ones "friends" list? I am new at this chat thing. But feel free, I would be happy to lend an ear.

Ern

Ern said:

Thanks
I want to thank you for the wisdom or your reply. I am truly humbled by all you have been through. The wholistic criteria for the doctor/patient relationship and treatment is really on the mark. A sign of one who has truly been through the mill.
It does show haw far things have come, thank God, since the fall of 1977. At the time I could tell that the Doctor did not think I was going to make it just by how I was treated. (My Parents told me not long ago that they gave me six months at the time. A conscious decision on their part, also one on mine not to ask!) My treatment at the time was strictly chemo. After that I was on my own. I do remember the social impact it had at the time. I would clear the room any where I went. "Friends" would cross the street to avoid me. I must admit I started doing the same. I hope things are better in the world at large for you.

Gotta go. Question: What is the protocol for gettin on ones "friends" list? I am new at this chat thing. But feel free, I would be happy to lend an ear.

Last posting
Soccerfreaks, slickwilly, Eil4186:
I thought that last posting was going to soccerfreaks alone and lo and behold ther it is. I was intending to reply to each indvidually and extend the same friends invitation. Again, I am truly humbled by each of your experiences. It is refreshing to talk about these things with those who have walked a similar path. It is something I have never done.

blueroses

Similar Situation Here
Hi Ern, I had a bone marrow transplant for NHL 18 years ago and have been through the mill a few times with all the late effects I have had since then. I was healthy before it all started. No doubt today the treatments, I would hope, are somewhat better but from what you describe the outcomes are still sometimes the same or similar. I have the same cognitive difficulties you do as well plus more, your description of one of your chemo brain issues is exactly what I experience as well. I have asked to be tested by a memory clinic who handles not only memory issues but other cognitive difficulties as well. I also feel that I suffer from PTSD due to several incidents during my cancer treatments. The drug that stands out in both our treatments seems to be adriamycin. My cardiologist last year finally used the words 'adriamycin induced cardiomyopathy' which means that that drug damaged my heart. I have suffered from atrial fibrulation ever since the administration of that drug and it's getting worse and worse. Some people have it and are in afib all the time but no side effects but most of the time when mine starts I start to feel very unwell and at times am near fainting. Needless to say it screws with my daily life as I never know when it is going to hit or why. Almost 4 years ago I suffered a major bout of afib, head rushes from hell and a gripping chest pain, went to the ER for the billionth time but this time I knew it was different. They called in my daughter because I don't think they thought I was going to make it. They put in an emergency pacemaker and that helped quite a bit by slowing things down but now that isnt enough and I am on mega doses of 3 other heart drugs too that most people couldn't take with no pacemaker because the drugs could drive the beats down too much without the device. So they are controlling it that way now but the side effects of the drugs are nuts. Tiredness like no other and my cardiologist said that the drugs are working like brakes on a car - both deployed full tilt all the time 24/7 and I have to function with both sets of brakes on trying to move forward - literally - is a challenge. It's a good analogy. I think you are speaking of ablation are you, the surgery to fix the circuits of the heart that are off on tangents? I'm glad it worked for you but I am terrified of it since there is a mortality rate that is involved, had to make that decision 18 years ago for my bone marrow transplant. It doesn't always work either for some people but as the afib gets worse I know they are going to start to talk about it. I am often overwhelmed by all my after effects as I have spoken about on this board. I also have early arthritis from the radiation no doubt, lung issues with scarring from the pneumonias I had during transplant and cilia were destroyed so I get infections faster in my bronchial tubes too. They think I have chronic fatigue syndrome as well but hard to tell with so many other things I deal with that could cause fatigue too. I tend to lose potassium as well so have to have replacements. I am hypothyroid too, on replacements for that as well. I have dry eye syndrome no doubt from the total body radiation that causes me many problems. I could go on and on. Cancer can be cured, I am living proof of that, but there is a high price to pay for many treatments. You aren't alone. Welcome to the board. Blessings, Blueroses.

deedee0119

blueroses said:

Similar Situation Here
Hi Ern, I had a bone marrow transplant for NHL 18 years ago and have been through the mill a few times with all the late effects I have had since then. I was healthy before it all started. No doubt today the treatments, I would hope, are somewhat better but from what you describe the outcomes are still sometimes the same or similar. I have the same cognitive difficulties you do as well plus more, your description of one of your chemo brain issues is exactly what I experience as well. I have asked to be tested by a memory clinic who handles not only memory issues but other cognitive difficulties as well. I also feel that I suffer from PTSD due to several incidents during my cancer treatments. The drug that stands out in both our treatments seems to be adriamycin. My cardiologist last year finally used the words 'adriamycin induced cardiomyopathy' which means that that drug damaged my heart. I have suffered from atrial fibrulation ever since the administration of that drug and it's getting worse and worse. Some people have it and are in afib all the time but no side effects but most of the time when mine starts I start to feel very unwell and at times am near fainting. Needless to say it screws with my daily life as I never know when it is going to hit or why. Almost 4 years ago I suffered a major bout of afib, head rushes from hell and a gripping chest pain, went to the ER for the billionth time but this time I knew it was different. They called in my daughter because I don't think they thought I was going to make it. They put in an emergency pacemaker and that helped quite a bit by slowing things down but now that isnt enough and I am on mega doses of 3 other heart drugs too that most people couldn't take with no pacemaker because the drugs could drive the beats down too much without the device. So they are controlling it that way now but the side effects of the drugs are nuts. Tiredness like no other and my cardiologist said that the drugs are working like brakes on a car - both deployed full tilt all the time 24/7 and I have to function with both sets of brakes on trying to move forward - literally - is a challenge. It's a good analogy. I think you are speaking of ablation are you, the surgery to fix the circuits of the heart that are off on tangents? I'm glad it worked for you but I am terrified of it since there is a mortality rate that is involved, had to make that decision 18 years ago for my bone marrow transplant. It doesn't always work either for some people but as the afib gets worse I know they are going to start to talk about it. I am often overwhelmed by all my after effects as I have spoken about on this board. I also have early arthritis from the radiation no doubt, lung issues with scarring from the pneumonias I had during transplant and cilia were destroyed so I get infections faster in my bronchial tubes too. They think I have chronic fatigue syndrome as well but hard to tell with so many other things I deal with that could cause fatigue too. I tend to lose potassium as well so have to have replacements. I am hypothyroid too, on replacements for that as well. I have dry eye syndrome no doubt from the total body radiation that causes me many problems. I could go on and on. Cancer can be cured, I am living proof of that, but there is a high price to pay for many treatments. You aren't alone. Welcome to the board. Blessings, Blueroses.

LATE SIDE EFFECTS
Was diagnosed with Wilms tumor way back in the day. Had 2 surgeries, chemo and radiation. My side effects have seemed to be increasing as the years go on. First of all -- my skeletal system is totally off -- radiation was concentrated to the right side of my body -- therefore it stunted the growth on that side. My left hip is normal .. my right hip protrudes more. My spine is crooked and some areas are compressed and from what the orthopedist says -- are pressing on some nerves. Which explains the hot, numb feeling I get when I lay flat on my stomach. I have chronic leg pain, high blood pressure (since I'm 18 years old), can't sleep on my side, can't get comfortable. Also have heavy shortness of breath -- saw a pulmonary dr -- was told I am only breathing at less than 1/2 my lung capacity -- but he can't see anything wrong with my lungs. I am seeing a cardiologist not only because of the shortness of breath, but also because my resting heartrate is over 143 beats per minute. But no one can seem to find anything that help me. That's just to name a few. Anyone have any suggestions??

Dana

hodgkoid2003

deedee0119 said:

LATE SIDE EFFECTS
Was diagnosed with Wilms tumor way back in the day. Had 2 surgeries, chemo and radiation. My side effects have seemed to be increasing as the years go on. First of all -- my skeletal system is totally off -- radiation was concentrated to the right side of my body -- therefore it stunted the growth on that side. My left hip is normal .. my right hip protrudes more. My spine is crooked and some areas are compressed and from what the orthopedist says -- are pressing on some nerves. Which explains the hot, numb feeling I get when I lay flat on my stomach. I have chronic leg pain, high blood pressure (since I'm 18 years old), can't sleep on my side, can't get comfortable. Also have heavy shortness of breath -- saw a pulmonary dr -- was told I am only breathing at less than 1/2 my lung capacity -- but he can't see anything wrong with my lungs. I am seeing a cardiologist not only because of the shortness of breath, but also because my resting heartrate is over 143 beats per minute. But no one can seem to find anything that help me. That's just to name a few. Anyone have any suggestions??

Dana

Dana,
It had been years since I'd seen an oncologist for follow ups for my Hodgkins Disease. You see, once I was done with my treatments, and then on to annual follow ups, I got away from seeing my oncologist.
Fast forward to April of last year, and I was rudely introduced to the world of Late Effects. After dealing with annoying chest tightness (not pain) for over four months, I was active and attended a gym, I saw a cardiologist at the advice of my family doctor. Well, long story short, 36 hours later, I had an emergency double bypass for a condition called a "widowmaker", a 90% blockage of my left artery going to the heart.
Due to my familiarity with a support list dealing with late effects, I hooked up with a late effects clinic and have learned so much. I do have more issues (more than I care to list right now) including pulmonary, more cardiac, and some spinal.
The late effects list that I am involved with has several survivors of Wilm's (the list is not just limited to Hodgkin's, Wilms, but many more). I think you could truly benefit from some of them. If you go to wwww.acor.org, go to mailing lists, then look for LT-Survivors and I think you will find so many answers.

Paul E. (Hodgkoid2003)
cured 19 years without a relapse
radiation
MOPP-ABV
Double-bypass in April 2008
Restrictive Lung Disease
Radiation Fibrosys Syndrome
Osteopenia in lower four vertebrae
muscle loss in neck and shoulder
hypothyroid and more...