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thirty year survivor now having medical issues--tell me I'm not alone

Fran-HD
Posts: 12
Joined: Mar 2009

I had Hodgkins in 1980 as a senior in high school at age 17. With all the advancement in treatment I almost feel like I had Hodgkins in the stone ages now. I am now 47 with a wonderful family. My chest and neck were radiated. Five years ago I was told that I had pulmonary fibrosis(scar tissuein my lungs) probably from the radiation. It is kept under control for the most part with asthma medicine. I started having reflux about 3 years ago and it has been under control with reflux medicine until about 4 months ago. I am now having a lot of gi issues. My gi doc wanted to have a surgical procedure done to stop the reflux but the surgeon does not want to do it because of the radiation to the esophagus and he would be trying to do this procedure with unhealthy(radiated) tissue. They did further testing last week and determined that my esophagus is not functioning well at all. They are saying that it is the radiation. So now they are saying they cannot do the surgery to stop the reflux but they want to do something because they do not want me to continue to reflux and aspirate and lose more lung capacity. This is a horrible health nightmare that has come back to haunt me again. Thirty years of remission is awesome and I am very grateful but having to deal with all these late side effects is not very comforting.

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

Fran. It seems that cancer is always a part of our lives. To be a 30 year survivor is great though. And no, your treatment was not in the stone age. 6 years ago I had 25 radiation treatments to my face. Shortly after my neck started hurting. Within two years it was in pain most of the days of the month. Then my left arm went into pain and quit working. My neck basically fell apart and nothing could be done because the radiation had made all the bone brittle. I got my arm working some after 3 months of rehab but ended up on disability as I am in pain most of the time. Half my sinus is full of scar tissue and not working. And who really knows what will come later in my life. So NO. Your not alone. We survived though and I am happy for every day I am here. And I am very happy that your here. Bless you Slickwilly

Fran-HD
Posts: 12
Joined: Mar 2009

Thanks for your support. I am so sorry that you are not able to work and are in pain. That is one piece that I am fearful of having to give up. I have had to cut back just because I do not have the stamina to do it all any more. I am very grateful for many things that God has given me in my life including my husband and my two children as well as some supportive friends. My husband is having a hard time with this recent bout of medical issues but I do not think he understands the long term effects of what happened 30 years ago. I pray for him everyday as well to get understanding and acceptance that this is going to continue to be a long term problem/issue. Bless you as well. I will pray for your pain to be lightened. Fran

2manyrads
Posts: 16
Joined: May 2010

As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. After surgery, radiation and chemo treatments for four cancers (leukemia, thyroid, lymphoma, prostate), three open-heart operations, four years under Hospice care, and twenty-six years after being told I had six months to live, I believe that one of the reasons I am still alive is to tell this story so we can learn to use medical radiation with greater caution. I am firmly convinced that the proper use of radiation saves many more lives than it threatens—I have benefited from diagnostic and interventional radiation, without which I would not have survived the very diseases that excess radiation caused.

I am currently working on a book about the tragic misuse of radiation on children for benign conditions (including thymus, earache, acne, tonsils, adenoids, birthmark, mumps, fungus, etc.) and would be very interested to hear other’s stories.

I want to alert parents to the risks from the increasing amount of radiation children are receiving from CT scans today. According to a recent New England Journal of Medicine report, “there is direct evidence from epidemiologic studies that the organ doses corresponding to a common CT study result in an increased risk of cancer. The evidence is reasonably convincing for adults and very convincing for children.”

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

Hello Fran, so sorry to hear that you are having after effects after such a long time out of treatment. Long story short, you are not alone. I am a 20 year NHL survivor and have countless after effects from my treatments, only recently have they started to realize they are from treatments, or admitted it. My heart is damaged from chemo drugs and now I have a pacemaker and many heart medications. I have early arthritis from the total body radiation I received and scar tissue in my lungs as well from pneumonias I had during treatment. I have chronic bronchitis that has just this year seemingly been a bit better but it has take a long time and it still is an issue - especially in the winter.

There are many papers written on the long term effects to long time survivors so don't feel alone because you aren't. You will find this board helpful I am sure. Blessings, Blueroses.

Fran-HD
Posts: 12
Joined: Mar 2009

What a lovely blue rose. I am sure as lovely as you! Thanks for the supporting words. It really means a lot. I have been reading some other blogs on long term effects and am surprised about all of the additional health concerns that are affecting people who have already been through so much. It almost doesnt seem fare but guess somehow it is all a part of God's plan for us. Someone told me at church yesterday that when I get to the pearly gates that they are not even going to stop me that they are going to say sorry and wave me right through. That did make me smile. I hope it is a long time before I get to the pearly gates but am happy for every day I get. Hope your lungs continue to improve aven baby steps are better than nothing. Bless you Fran

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

Hi Fran, The idea of a blue rose has always appealed to me since I read that Tennessee Williams play 'The Glass Menagerie', one of the characters in it had blueroses as a nickname. As you probably know there are no such thing as a blue rose in nature - no color combination can produce a blue rose. So sad really. Now and again I get a florist to dye some white roses for me and then I dry them and have my blueroses - they are quite pretty.

I believe that God has a plan for all of us and for some cancer is part of our path. Hope this message finds you having a good day. Blessings Blueroses.

Fran-HD
Posts: 12
Joined: Mar 2009

Thanks for the words of encouragement. I have had a wonderful day. I have done a lot of meditating today about everything going on in my life right now and have been at wonderful peace today. That may change when I go to the doctor on Thursday for the results of the tests telling the doctor how poorly my esophagus is working and how much reflux I have and then they tell me that it was most likely the radiation and there is nothing they can do because all the tissue is damaged. I really am not anxious about the results of the tests because I really already know, they told me some the day of the test. The part that I am concerned about is there not being anything they can do to help the situation and my quality of life deminishing. But I find peace in the fact that it is all a part of HIS plan. Have a great evening. Fran

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

Fran, I was so glad to hear that you had a good day and managed to get some meditation in. It can so help reduce a person's anxiety and put them in a better frame of mind, I should do it more often myself. You are in my prayers in regards to the doctors appointment on Thursday and I will say good luck to you now because my memory is short and I may forget closer to the day. Do let us know how it goes will you? Hold a good thought and pray and if you know prayer chains in your church do ask the Minister to ask them to put you on their chain and you never know what results you will see. I had a prayer chain or two going when I was in grave trouble during my transplant and I just KNOW that they were responsible for my healings. Hope today is another good day for you. Blessings, Blueroses.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Fran,

I can totally relate to having to deal with late effects for long term survivors. I stopped seeing an oncologist over ten years ago, because "I didn't need to see one anymore. I was in the clear for sure after 6-7 years. While I don't have your survival years notched, I know what it's like to be told you are facing the effects of what save your life so many years ago.

I'll try to keep my story short. After 18 years, developed a chest "tightness" which was more annoying than painful. But my GP, on a whim, ordered a nuclear stress test and found out I had a major blockage to the main artery to my heart. The cardiologist didn't even want me leaving his office. I had an emergency double bypass to repair arteries that had been scarred by either the radiation or one of the chemo drugs. Neither my cardiologist, or GP are prepared or schooled for how to deal with this, not to mention, what else might I be facing.

There are two things that I am going to suggest. The first, there is a wonderful support list of long term survivors like us, specifically dealing with late effects. It is the LT Survivors which can be found at www.acor.org. Now I will warn you, there are all kinds of survivors on this list whose treatments were even more barberic than I would consider mine, or you might yours. And the late effects are just as bad. And there are many, like I used to be, just dealing with small issues such as thyroid and fertility or less.

The other thing, believe it or not, there are actually doctors who are familiar with late effects. They are not common, but can be found on both coasts. There are plenty who can recommend from the ACOR list. The great thing about the doctor I found, is that he communicates with my GP. In other words, he has studied and knows what to look for. Then has my GP order the tests, and for the most part, the GP will take care of any courses of action. And all I do is follow up with the late effects doc.

I will admit, you wanted to believe that you were done years ago. And nothing is more attention-getting than, it's not a question of if you are going to have a fatal massive heart attack, but when... But to be honest, mentally, I couldn't feel any better knowing that I am in the hands of someone capable of recognizing what to look for.

No, these late effects are not fun. But as my specialist says, we "can manage them if we can diagnose them".

Paul E., 43
Lansdale, PA
Hodgkin's Disease IIIBNS
treated with 4500 rads and 8 cycles of MOPP-ABV
hypothyroid and infertile from treatments
emergency double bypass in April of 2008
blessed with two beautiful daughters adopted in 2004 and 2006

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

I am a 20 year survivor of NHL and have a whole whack of late effects and it has only been in the last 3 years that I have been validated in thinking that most of them were directly related to my treatments. You are so blessed to have found an actual late effects doc though and I can only pray that soon they will be found in more abundance. I am in Canada and as far as I have found we have no actual late effects doctors here. If anyone knows of any new ones can you let me know please? Thanks. Thanks for the posting hodgkoid. I hope this posting finds you having a 'good day'. Blessings, Blueroses.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Blue Roses,

Please do not think that Canada is that far away. There are late effect clinics in Boston and NYC, Seattle, and Cleveland. Someone from my LT list once said, if it comes down to it, don't let economics determine your fate. I know, easier said that done in most cases, but even if it is for just an evaluation, like I do, it could be so worth it for you.

Paul E.

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

Thanks for your response. I actually looked into getting a head to toe once over at The Lance Armstrong Clinic at Dana Farber but when they started adding up all the specialists and tests I would need, even with their Canadians discounts, it was way up there in the thousands and I couldn't do that on my disability. It would be so worth it I know but if you don't have the money you just don't have the money. No plan would cover that kind of visit here either, they would say that we have the same specialists here but wouldn't acknowledge the late effects aspect as they do there but maybe someday soon. Thanks. Blessings, Blueroses.

RichardW1
Posts: 2
Joined: Sep 2009

Blue rose,

My current late effect doctor is Dr Hodgson. One of many doctors available at Princess Margaret Hospital in Toronto with late effects experience. He reads the latest journals and recommends pro-active testing/screening when he sees potential risk. Your GP should be able to refer you to get an appointment. If not get your GP to use his network to find the nearest cancer center to find another. I hope this works for you and good luck!

Richard

ralphie322's picture
ralphie322
Posts: 20
Joined: Mar 2009

when u said thyroid issues can u let me know your symptoms@ who u had to see.. my blood always come back good but my symptoms read like hypothyroidism or is it side effects of radiation @chemo.i am a 7 yr survivor..it just seems like it never ends please let me know thanks fran

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

I never really had any symptoms for my thyroid. To be honest, a lot of oncologists pretty much assume that if you had radiation to your throat area, chances are pretty good for thyroid issues. But simple blood tests at the least can determine hypo or hyper thyroid. I believe the test are TSH and T4 (though don't quote me - it's been a while).

Paul E.

ralphie322's picture
ralphie322
Posts: 20
Joined: Mar 2009

Sorry about the name.. thanks for the reply i am gonna look into the bloodtests thanks

Fran-HD
Posts: 12
Joined: Mar 2009

Paul thank you for the information. I had tried to access the LT survivors list before but did not get the correct link so that you for that information. I will definetly look into the long term doctors. I have great doctors where I live but I do not think they are well versed in long term radiation effects. They are doing a lot of guessing because they do not know what to do. I did find out that my upper esophagus is mildly weak with its muscle strength but the lower have does not work at all. It causes a major problem with reflux because the reflux gets into the lower esophagus and the muscle is too weak or cannot push it back in at all and there it sits. They have determined that they cannot do surgery because the radiated tissue will not hold the procedure and I would end up in a worse situation. Hopefully I will be able to find a long term health issue doctor close by that will be able to work with my primary care doc.
You have a beautiful family! I know that you cherish them.
Fran

Stone77
Posts: 2
Joined: Jul 2010

After full mantel radiation therapy, I survived 2nd stage Hodgkins in '77 as a student. Now as a family man, I'm now getting late effects: and due to my heart stopping a pacemaker was put in. Seeing a cardiologist and late effects expert in NYC, I'm on Micardis 40mg, Vytorin 10/20mg, Synthroid .1mg, Toprol XL 25mg, and a baby aspirin a day. I have no idea what my Pacemaker is programed for, but when I got it, I could barely move - they adjusted within a week. I've had this pacemaker for 5 years.
I'm exhausted - my muscle tone is great, I'm in shape, but I get tired fast.
Does anyone else have this problem?
My feeling is its not the drugs - it could be the pacemaker settings - but my doctors are not responding - they simply say that my stats are terrific. I can't keep up with people 25 years older and have a hard time holding up my head.
Any ideas on pacemaker adjustment?

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

no but 1 of my clients has a pacemaker fitted and she has just had to have her battery replaced after 5 years as it was not running efficiently.
She got very very tired also.

Maybe your battery needs changing?

lucky13
Posts: 1
Joined: Jul 2010

Hi,
I am new to this sight but am glad to have found this as I have many problems also. I am sorry so many of you have the same problems.

I was wondering how your heart problems started out? I was just told I have a leaky valve but not to worry about it. I am still getting medication (Herceptin & Femara). Treatment is for BC, had bilateral mastectomy. Neither of these medications are good for the heart. I also had full mantle cobalt radiation 34 years ago when I was 15 and have had several long term side effects like many have mentioned. My heart leak is a new discovery. When do I start to worry about it? I get winded very easy.

paulaandersen
Posts: 6
Joined: Jul 2010

I am a 5 year survivor of NHL. I received 22 radiation treatments from the base of my brain to my collar bones. My salivary glands were affected and now I have no thin saliva, only thick saliva. I'm constantly coughing up phlem and my ears plug up on me too. I try to go and get them cleaned often at the ENT. I also received 6 chemo treatments (RCHOP) and 6 intra-thecal chemo treatments in my spinal column. Now I suffer from hip pain since January of this year and noone seems to be concerned. Has anyone else ever had these treatments to the spine and if so, have you suffered any side effects such as back pain or hip pain?

LCollodi's picture
LCollodi
Posts: 1
Joined: Aug 2010

Wow I am so happy to have found this site. I am a 18 year survivor of Hodgkins and now 2 months from melanoma. I really thought I was going crazy. I am 44 years old. I am having all the same symptoms you all are experiencing. I had radiation from tip of ears to just below the breast and having all sorts of side effects. Lung capacity very minimal, loosing teeth no saliva, lumpy breasts and irregular heart beat. I am a martial artist, and just got into working out and have lost 30 pounds. I have done this before but hit a wall when it comes to lungs and pain. This time I refuse to give up and when I found this site I cried at the joy of knowing I am not alone but cried because of all of you suffering this same pain. So this morning I shot my Doctor a message and he is refering me to a pulmonary doc. Thank goodness!! I want answers and I want to get passed this. I do understand they don't do the radiation treatments like they did in the 80's and 90's. I know the chemo abvd (7months)is what i got and 2 months of radiation. Which I ended up in the hospital for 2 months due to burning my inners. Anyway, I thank you all for your support and we can get through this together.
With a smile,
Lisa

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

I too, am glad to have come into this site. I am a 2 yr survivor that also went through the ABVD process. Like you,, I have the problems with decreased lung function, thick saliva, pains. My docs had let me know at the beginning the lung function decrease was going to be a given since they were going with the chemo and radiation. I've tried everything I can to get back to the spot I was before, but just can not get to the same level anymore. That does'nt keep me from trying though, and it gives the guys in the shop a good laugh when I try and show up the younger ones.( I'm 44 also)
Keep up the good fight!
Dave

PatrickTX0860
Posts: 1
Joined: Mar 2008

I just turned 50 a few weeks ago and am kicking off my 30th year of surviving Hodgkin's, not once but twice. I was diagnosed Stage 3B Hodgkin's as a junior in college in 1981 and had full body radiation from my neck to my hips for several months, along with having my spleen removed and a number of lymph nodes in my abdomen also clipped. I was in remission until almost exactly 4 years later when I had a recurrence, this time doing the infamous ABVD chemo. However, I had to stop chemo just over half-way due to the massive side effects, but there was no presence of the disease when I did.

While I thankfully haven't had the drastic side effects some of you have, which I thank the professionalism and skill of my doctors and nurses for every day, my current doctor is warning me of the potential ones to come and we're taking pro-active action to meet them. My oncologist has me on treatments for immune effects due to my missing spleen (I tend to get sick when someone coughs nearby). I do have some damage to one of my heart valves, but it's very minor. My cardio doctor agreed that it was probably radiation/chemo damage. Other than that, 2 complete stress tests have shown only minor blockage consistent with my age and no other problems. I also have a condition known as Schatzki's Ring, which is scar tissue likely caused by radiation in my throat, which I have to have treated (endoscopy) about every year or so. Aside from the mental demons that appear every so often, that's the extent of my side effects so far, but I am constantly wary and being checked yearly. Obviously, there's no guarantee that something drastic won't happen but it pays to be constantly vigilant.

For those of you new survivors that might be reading this, I'll leave you with a positive note and some hope for you. First, hunt down and never let go of a good oncologist and treatment staff that truly care for and protect you at every step. These people are vital to your future survival in a most literal sense. Without them, I would not have had a career spanning 26 years now in telecommunications, my wonderful wife of 16 years, or my two miracle children that are strong, healthy, and intelligent, and that I had no hope of ever being able to have!

Never give up! Never surrender!
Pat

nkay26's picture
nkay26
Posts: 2
Joined: May 2013

Patrick you are amazing! So is everyone on this thread! I am in the middle of treatments right now,  and may need radiation too... 

But like Patrick says,  never give up, never surrender. =) 

40yearsandcounting
Posts: 14
Joined: Dec 2012

Just want to add to Patrick's sentiments- I'm a 40 year survivor of Hodgkins, diagnosed in 1972 when i was 15. Had LOTS of radaiation, chemo, surgery, etc.  I've also had my share of the after effects of the radiation used in those days. The good news is that A. I'm still here! and B. The medical community has learned so much from people like Patrick and me, and all the other brave survivors you have and will meet on this site. They have figured out ways to spare newly diagnosed Hodgkins patients from many of the long term issues that us "old" folks are dealing with. So, stay brave, stay positive, never give up, and know that you are not alone. We are all here rooting for you!!! Take care- Erin

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