Hodgkin's - mantle radiation - lungs / heart / breast cancer

Hodel13 said:

ICU
Kathy,
I am sorry to hear that your husband is in the ICU. I wish him the very best and hope he has a full recovery.

Heart Transplant Needed
Thank you.

He has been unable to exit the hospital. He is refractory to treatment for heart failure now. He goes into kidney failure when he is given diuretics. Diuretics are needed to remove the fluid that builds up in the body from the heart failure. He has a severe case of it - 30 to 40 pounds of fluid now.

In case this helps anyone someday, the only thing that is keeping him going now is Nesiritide. It has an FDA warning against home use so he is stuck in the hospital. It is controversial because it has not proven to help with shortness of breath in left heart failure; however, he has right heart failure and pulmonary hypertension. The drug works for these problems which has been noted in various written clinical observations; however, there are no studies to support its use. I presume this is because right heart failure is more rare. He also has restrictive cardiomyopathy (also caused by radiation), which the doctors have also noticed is helped by Nesiritide. Again, there are no studies. Restrictive cardiomyopathy is the rarest form of heart failure.

He may also have constrictive cardiomyopathy, which is the lining of the heart preventing the heart from filling. The areas where the surgeon cut through the pericardium to perform the valve replacement in 2002 could have adhered to the heart, causing the construction.

He may also be suffering from scar tissue from the 2002 surgery pressing on the right side of the heart (which faces the front of the body).

Surgery for the above-two options is very risky and may not work.

He was initially denied for heart transplant due to calcified aorta (scarring from radiation). I applied to other hospitals until one took him under consideration. I asked his surgeon from 2002 that replaced his valves to review his case, and his surgeon took his case to the heart transplant committee for reconsideration. They have reopened his case and are now allowing him to proceed with biopsies to rule out exclusion factors.

He has a tumor on his adrenal gland. If it turns out to be malignant, he would not be eligible. Next they need to do a liver biopsy to be certain his liver would withstand a heart transplant (he has liver cirrhosis, which is a result of heart failure).

The committee is also considering him for an artificial heart.

Hodel13 said:

Long Term Effects from Hodgkins Treatments
Thanks Cathy. I have never heard of a Long Term Effects specialist but it is an interesting idea. I have mentioned to my Dr. that they really should do some type of follow-up on long term survivors. Just had a breast MRI and a bone density done. I believe I had an echo before my thyroid surgery last year and everything was good. I will definitely have them keep an eye on it.
All the best!

Northwestern Memorial Hospital
Hi "Hodel13" -- I had never heard of such a thing either and only by chance ran into this doctor. We moved 18 months ago to Illinois and at the Northwestern Memorial Hospital, they have a STAR program http://www.childrensmemorial.org/depts/cancer/2003ar.aspx Check it out! I go through Dr. Suresh Didwania (the female Didwania... there are two), but it looks like there are other doctors in the program. It's designed for adult survivors of childhood cancers. Very thorough and I like that they know what to look for. Good luck--

cathyp said:

Long Term Effects from Hodgkins Treatments
Glad to hear you have an empathetic oncologist, that certainly helps. Do you have a Long Term Effect specialist on your team? I go to a LT Effect clinic and have found this to be extremely comforting. Are you having regular echos and/or stress echos? Not to alarm you but it's important to stay on top of potential cardiac complications. As you may know, there are potentially numerous effects that occur 20+ years out from treatment. I'm with you on the emotional roller coaster of the ups and downs.
I was dx'd in 1989 (radiation) and 1994 (ABVD) w/Hodgkins Lymphoma, Invasive Ductual Carcinoma (double mastectomy) in 2007. Have a host of other "gifts" from the treatments, but as you stated we are "lucky" to have been dx'd and cured when we were.
Best wishes to you,
Cathy

Long Term Effects cont'd
I am so glad to find this blog. Apparently I joined this last year but my memory is absolutely shot due to all the various medical issues since the Hodgkins. I was diagnosed at age 15 in 1982, went through the strange tests, biopsies, splenectomy and 6 weeks of radiation. Since then I have had a plethera of issues. The summer after I was diagnosed, I came down with the chicken pox which then lead into a staph infection requiring hospitalization. The next issue was the diagnosis of hypothyroidism which could explain why I required surgery for a fissure. I had always been very active but was starting to slow down. I hurried to get married and gave birth to 2 healthy children after one doctor made sure I was aware that I would go through menopause early. The day after I delivered my second child,at age 27, I experienced excrutiating abdominal pain (fortunately while still in the hospital). The scar tissue from my splenectomy had formed a kink around my intestines creating a blockage so I was rushed into emergency surgery. Not too long after that the bacteria from my intestines created an infection and my incision had to be lanced so I cared for my newborn with a gaping hole in my abdomen. I remained healthy for a while but shortness of breath increased. In 2006, I developed pericarditis along with sepsis and was in ICU for 2 weeks with multiple organ failure along with a leaky aortic valve. My next diagnosis in 2007 was, as well all know DCIS, which resulted in a double mastectomy. In 2011 I started off having a severe persistent cough and extreme shortness of breath. Finally my doctors determined I had pleural effusions and started draining a litre of liquid out of my plueral sac each week for a month. This turned out to be chylothorax. In the end after various treatments and 2 weeks in the hospital, I ended up with a talc pleuridisis (sp)where the end result is now my lung is adhered to my chest wall to keep any further fluid from accumulating. My lung capacity is now 65% which is difficult from being so active earlier in my life. In February I started getting seizures which are not sure why but now I get to take anti-seizure meds. I get checked every 3 months by my pulmonologist and primary care doctor who are amazing as my latest diagnosis is pulmonary hypertension (which apparently I've had for a while??). I don't know if any of you experience the anxiety or PTSD? After not worrying about health issues for a while, I now wonder what's next or if this is the one that 'gets me'.Has anyone had any of these other lung issues?

Hepfan said:

Interesting Article about lung issues
http://www.touchbriefings.com/pdf/3221/needham.pdf

Long Term Hodgkin Survivor
I read through some of the stories here many sound so familiar to my own. I am 56 years old I had Hodgkin when I was 16 way back in 1973. I must say I have had a lot of good fairly trouble free years. I had what they call total nodal radiation and they removed my spleen followed by years of chemo. My first indication of any problems were problems with my thyroid. This was easily handled with a daily dose of synthroid for the rest of my life. I had some other problems too down the including gallbladder disease which runs in my family.

My real issues started about 12 years ago when I contracted pericarditis. I had it so bad after a pericardium window I spent 3 days in a coma. I was in the hospital for 6 weeks during the time I also had a cardial mri. In the end it was determined that the pericardium needed to be removed so this was done and I got better for awhile. Doing ok until about 6 years ago I had trouble with my heart again in the form of valve leaking. They were leaking so bad that open heart was necessary and I had a quadruple bypass with a double (mitral & aorita) valve replacement. It was a long surgery with an even longer recovery and when I first started my recovery I needed physical therapy and occupational therapy. I could not string 2 words together.

In November of 2011 I was diagnosed with malignant carcinoma in my right breast. Fortunately for me the lump was caught early only 1.2 cm. I had a lumpectomy which took forever to heal followed by 6 weeks of radiation to my right breast. No nodes were involved because they could not find any nodes. All of this followed by a daily dose of tamoxifen. But wait there's more.

Finally I though 2013 would be my year to feel ok but sadly its not to be. Last week I went to the hospital with shortness of breath and they diagnosed me with CHF gave me a shot of lasex and sent me home. That was on Wednesday. On Sunday I was back into the hosp ER and I was having terrible problems with light headed vertigo. (I also had this in the middle of the course of radiation treatments for the breast cancer but it was positional so worked through it.) This time they did a ct on my head and found an "adnormality" my latest doctor in a long list of specialiasts (a neurologist) had an MRI done on my brain and it was determined to be an old stroke. It could have happened even during my open heart which I would not doubt. At least it wasn't brain cancer!

Finally after a few days in the hospital my cardiologist has determined that I may have myocardial fibrosis. I had never anticipated this but it seems I have had the whole spectrum of mantle radiation effects to my heart as he explained to me I already experienced 3 of the 4 and that the fibrosis is the last. I am taking one day at a time now but must say I am quite scared of where this will lead and I really don't have any answers or know much about this latest heart condition.

breathless said:

Long Term Hodgkin Survivor
I read through some of the stories here many sound so familiar to my own. I am 56 years old I had Hodgkin when I was 16 way back in 1973. I must say I have had a lot of good fairly trouble free years. I had what they call total nodal radiation and they removed my spleen followed by years of chemo. My first indication of any problems were problems with my thyroid. This was easily handled with a daily dose of synthroid for the rest of my life. I had some other problems too down the including gallbladder disease which runs in my family.

My real issues started about 12 years ago when I contracted pericarditis. I had it so bad after a pericardium window I spent 3 days in a coma. I was in the hospital for 6 weeks during the time I also had a cardial mri. In the end it was determined that the pericardium needed to be removed so this was done and I got better for awhile. Doing ok until about 6 years ago I had trouble with my heart again in the form of valve leaking. They were leaking so bad that open heart was necessary and I had a quadruple bypass with a double (mitral & aorita) valve replacement. It was a long surgery with an even longer recovery and when I first started my recovery I needed physical therapy and occupational therapy. I could not string 2 words together.

In November of 2011 I was diagnosed with malignant carcinoma in my right breast. Fortunately for me the lump was caught early only 1.2 cm. I had a lumpectomy which took forever to heal followed by 6 weeks of radiation to my right breast. No nodes were involved because they could not find any nodes. All of this followed by a daily dose of tamoxifen. But wait there's more.

Finally I though 2013 would be my year to feel ok but sadly its not to be. Last week I went to the hospital with shortness of breath and they diagnosed me with CHF gave me a shot of lasex and sent me home. That was on Wednesday. On Sunday I was back into the hosp ER and I was having terrible problems with light headed vertigo. (I also had this in the middle of the course of radiation treatments for the breast cancer but it was positional so worked through it.) This time they did a ct on my head and found an "adnormality" my latest doctor in a long list of specialiasts (a neurologist) had an MRI done on my brain and it was determined to be an old stroke. It could have happened even during my open heart which I would not doubt. At least it wasn't brain cancer!

Finally after a few days in the hospital my cardiologist has determined that I may have myocardial fibrosis. I had never anticipated this but it seems I have had the whole spectrum of mantle radiation effects to my heart as he explained to me I already experienced 3 of the 4 and that the fibrosis is the last. I am taking one day at a time now but must say I am quite scared of where this will lead and I really don't have any answers or know much about this latest heart condition.

your latest news
I am very new to this so I apologize in advance if I'm not doing something right!!

I was so struck by your story as it so closely mimics my own. I was diagnosed with Hodgkins in 1972 at age 15. So we were going through all that at the same time!! I also had trouble with my thyroid and ended up with a thyroidectomy. I also had open heart surgery to replace my aortic valve. Pure hell that one. I had several complications and ended up in the hospital for the better part of 6 weeks. I had a lung biopsy a few years ago for "suspicious" nodules which ended up being scar tissue, thank goodness. I elected to have bilateral mastectomies about 10 years ago as a preventative measure. My most recent issue is with my voice. About a year ago my left vocal chord essentially stopped working. I'm left with rather raspy voice and occasionally difficulty swallowing. I'm not sure I would be a candidate for surgery to correct this as I'm sure there is ongoing concern about more scar tissue from all that radiation.

I'm so sorry that you are having to deal with yet another health issue. It does seem that the negative effects of radiation turns out to be the gift that keeps on giving!! You sound like an incredibly strong, determined person who has already weathered your share of obstacles. I wish I could help but I don't know much about myocardial fibrosis and Hodgkin's. I can only say that I will be thinking of you, a "kindred spirit," and praying that you get through these ordeals with flying colors. You deserve that, and more!! Take care- best of luck to you. Hang in there! You are not alone!!

breathless said:

Long Term Hodgkin Survivor
I read through some of the stories here many sound so familiar to my own. I am 56 years old I had Hodgkin when I was 16 way back in 1973. I must say I have had a lot of good fairly trouble free years. I had what they call total nodal radiation and they removed my spleen followed by years of chemo. My first indication of any problems were problems with my thyroid. This was easily handled with a daily dose of synthroid for the rest of my life. I had some other problems too down the including gallbladder disease which runs in my family.

My real issues started about 12 years ago when I contracted pericarditis. I had it so bad after a pericardium window I spent 3 days in a coma. I was in the hospital for 6 weeks during the time I also had a cardial mri. In the end it was determined that the pericardium needed to be removed so this was done and I got better for awhile. Doing ok until about 6 years ago I had trouble with my heart again in the form of valve leaking. They were leaking so bad that open heart was necessary and I had a quadruple bypass with a double (mitral & aorita) valve replacement. It was a long surgery with an even longer recovery and when I first started my recovery I needed physical therapy and occupational therapy. I could not string 2 words together.

In November of 2011 I was diagnosed with malignant carcinoma in my right breast. Fortunately for me the lump was caught early only 1.2 cm. I had a lumpectomy which took forever to heal followed by 6 weeks of radiation to my right breast. No nodes were involved because they could not find any nodes. All of this followed by a daily dose of tamoxifen. But wait there's more.

Finally I though 2013 would be my year to feel ok but sadly its not to be. Last week I went to the hospital with shortness of breath and they diagnosed me with CHF gave me a shot of lasex and sent me home. That was on Wednesday. On Sunday I was back into the hosp ER and I was having terrible problems with light headed vertigo. (I also had this in the middle of the course of radiation treatments for the breast cancer but it was positional so worked through it.) This time they did a ct on my head and found an "adnormality" my latest doctor in a long list of specialiasts (a neurologist) had an MRI done on my brain and it was determined to be an old stroke. It could have happened even during my open heart which I would not doubt. At least it wasn't brain cancer!

Finally after a few days in the hospital my cardiologist has determined that I may have myocardial fibrosis. I had never anticipated this but it seems I have had the whole spectrum of mantle radiation effects to my heart as he explained to me I already experienced 3 of the 4 and that the fibrosis is the last. I am taking one day at a time now but must say I am quite scared of where this will lead and I really don't have any answers or know much about this latest heart condition.

your latest news
I am very new to this so I apologize in advance if I'm not doing something right!!

I was so struck by your story as it so closely mimics my own. I was diagnosed with Hodgkins in 1972 at age 15. So we were going through all that at the same time!! I also had trouble with my thyroid and ended up with a thyroidectomy. I also had open heart surgery to replace my aortic valve. Pure hell that one. I had several complications and ended up in the hospital for the better part of 6 weeks. I had a lung biopsy a few years ago for "suspicious" nodules which ended up being scar tissue, thank goodness. I elected to have bilateral mastectomies about 10 years ago as a preventative measure. My most recent issue is with my voice. About a year ago my left vocal chord essentially stopped working. I'm left with rather raspy voice and occasionally difficulty swallowing. I'm not sure I would be a candidate for surgery to correct this as I'm sure there is ongoing concern about more scar tissue from all that radiation.

I'm so sorry that you are having to deal with yet another health issue. It does seem that the negative effects of radiation turns out to be the gift that keeps on giving!! You sound like an incredibly strong, determined person who has already weathered your share of obstacles. I wish I could help but I don't know much about myocardial fibrosis and Hodgkin's. I can only say that I will be thinking of you, a "kindred spirit," and praying that you get through these ordeals with flying colors. You deserve that, and more!! Take care- best of luck to you. Hang in there! You are not alone!!

nlmy said:

Hodgkins diagnosed 1973, chemo and radiation, MFH, Thyroid

Hi!  I, from Ohio and CT (now living in CT), got Hodgkins Disease in 1973 at age 12.   I had lots of chemo, prednisone and MOPP Mustard, Vancrystine.  I had extensive radiation in 1974 as cancer was detected in my lungs.  I was then healthy for 25 years...wonderful years growing up with my siblings, marriage.  During 3rd pregnancy (3 kids! so grateful!) I developed MFH (bone cancer).  I have a steel/cadaver bone right femur - walk with a limp.  But, since then I have been healthy - all well - until last year I developed thyroid cancer.  I am managing thyroid cancer fine. My lungs in the past year have not been well...the talk is COPD.  Just joined tonight as I wanted to learn more about Hodgkins survivors and these other issues that seem to beat on us as we age. I have fabulous doctors here in CT and have had many years of terrific health.  My best to you. Take care, Nancy

Hodgkins stage I II A diagnosed 1987, mantle radiation

I was 27 when I was diagnosed,I am now 53. I went through all the usual tests including lymphangiogram  (which thankfully they don' t do anymore). I received 3 months of mantle radiation to the left side of chest, neck abdomen. I have chronic anemia as the radiation affected my bone marrow, and I am hypothyroid. I have SOB with cardio exercises due to scar tissue in the upper lobe of my left lung. Saying all of that, I have led a very active life, tae kwon do in my 40's stopped because of a fx wrist. I am now doing Pilates 4 days a week..and yes I have to push my self, but the more I exercise the larger lung capacity I have and my breathing improves. I am still seeing my hematologist 2x per year and he has referred me to a hematologist oncologist who specializes in the issue of breast cancer in peri menapausal women who have had mantle radiation. It freaks me out that I am high risk, but keeping positive and enjoying life.

LBP53 said:

Hodgkins stage I II A diagnosed 1987, mantle radiation

I was 27 when I was diagnosed,I am now 53. I went through all the usual tests including lymphangiogram  (which thankfully they don' t do anymore). I received 3 months of mantle radiation to the left side of chest, neck abdomen. I have chronic anemia as the radiation affected my bone marrow, and I am hypothyroid. I have SOB with cardio exercises due to scar tissue in the upper lobe of my left lung. Saying all of that, I have led a very active life, tae kwon do in my 40's stopped because of a fx wrist. I am now doing Pilates 4 days a week..and yes I have to push my self, but the more I exercise the larger lung capacity I have and my breathing improves. I am still seeing my hematologist 2x per year and he has referred me to a hematologist oncologist who specializes in the issue of breast cancer in peri menapausal women who have had mantle radiation. It freaks me out that I am high risk, but keeping positive and enjoying life.

Hi LBP53,
Lymphangiogram,

Hi LBP53,

Lymphangiogram, "just a few needles" is what my doctor said!

Sorry to hear of your SOB.  I am interested in your pilates reference.  I'm going to start this to help with the radiation fibrosis syndrome.  I was curious , do you go for regular cardiac screening such as stress echos?  As you may know, our risk for cardiac complications is high and that sometimes manifests as SOB. 

Good luck with your onco regarding your breat cancer risk.  Mine appeared 18 years after mantle radiation.  Right before this I was asking to schedule prophylactic mastectomies.  I wish I had done it many years prior.  Keep us updated if you would like with your progress and the Dr's recommendations.

Cathy   HD 1989- RADS   HD 1994- ABVD   IDC 2007- DBL MX

nasman said:

Hodgkin's Stage 2 In 1986-Same symptoms

Hello All,

 

I was diagnosed with stage 2 Hodgkin's Disease in 1986. I underwent a free months of ABVD chemo, followed by two weeks of mantle radiation, then a few more months of chemo. They removed Bleomycin from the last few of my treatments due to poor pulmonary tests. I've got scarring (pulmonary fibrosis), asthma a calcified valve/mumur, arterial stenosis, get run down & sick easy. Have gum issues, teeth, & get very tired/short of breath at times even without exertion. I have joint/bone issues as well-particularly in neck, back, shoulders. I get told my thyroid is within "normal parameters but don't feel normal. I had issues with bloating/weight gain even when adhering to a strict diet & aggressive workout regimen for years. I let this fall by the wayside in 2005  when I tore both rotator cuffs & both viruses became active. I was slow to recuperate & my boss at that time was unsupportive of my medical needs, diagnosis & FMLA certification. He changed my job to one of much lower standing & ultimately fired me for "lack of documentation" because a doctor wrote a re-certification on his office letterhead instead of the HR form he had been given. I took legal action, but ultimately only received a small settlement.

 

At times my ability to work is impacted. Bosses have been mixed in understanding. I also had both Epstein-Barr & Cytomegla Viruses. Between the two I have been told they are responsible for Hodgkins Diease. Occasionally if I get ill or run down, they flare up again, which can leave me sick for months. '

 

I am both sorry to hear you share many of the same issues & relieved that I'm not crazy to feel so affected by these treatments & side effects. I find it very frustrating. Don't get me wrong, I am very glad to be here. My wife & I have three children, & have my own businesses. My youngest son has autism & I often wonder if my treatments my have ultimately genetically effected me & hence resulted in or contributed to his condition. 

 

Has anyone had any experience with having children with disabilities ? 

Hi Nasman,
My first child was

Hi Nasman,

My first child was born 3 yrs after my radiation treatment and my second 2 years after ABVD.  They do not have any medical or disability issues.  I do worry down the line for any genetic abnormalities I may have passed on because I have a braca mutation of unknown significance and a clotting mutation.  Who knows what else... considering.

Hang in there!

Cathy

Breathing Problems

I received the most radiation 23 years ago for hodgkins lymphoma. Currently, I have been diagnosed with radiation heart disease (cardiopmyopathy) and now I have difficulty breathing with any amount of exerting energy. Dr.'s cannot figure out why. Anyone else experiencing these problems or know a Dr. who can help? I have very little energy, constant dry cough, and no appetite.