Robin Shares About Aortic Stenosis And Cancer (Hodgkin’s Lymphoma)

Robin: You’re right in your feelings, waiting can get awful and your stress and anxiety levels will be up high when you do it. Muy husband had 4 months ago a mitral valve replacement and he was completely asympthomatic and excercising a lot, spinning, swimming. Doctors told him NOT TO WAIT FOR SYMPTHOMS they said: do it now you’re feeling well, the recovery is going to be easier and it did, he didn’t had trouble excercising again after the recovery and now he is cycling, working and looking great, as if nothing ever happened. So don´t be afraid, you’re going to be fine, you seem to be a warrior so if you beated cancer this is going to be a piece of cale for you, believe me. Good luck and keep us posted.

Hi Robin, I understand COMPLETELY what you are feeling! I lived with my aortic stenosis for 4 years before I had my surgery. Feb 11th of this year. I had known I had a murmur since I was twenty two, but did not know the exact cause. Well four years ago I was officially diagnosed with stenosis, but it was mild to moderate. This past year my cardio told me I had a bicuspid aortic valve, which became calcified. I too, have always been active with walking,and gym workouts. I was pretty much asympthomatic , and it really progressed quickly to severe this past year. They recommended I have the surgery. My exercise was limited for 2 1/2 mos before the surgery. I found it extremely depressing, so I decided it was time to go with it. I have had complications with PPS. The pericardial fluid is gone, but I am still experiencing some inflamation. I am walking my 2 1/2 miles several times per wk. I also, am starting to exercise at the gym. The surgery was a complete success, but we still need to resolve the inflamation. I am VERY HAPPY THOUGH to have the surgery BEHIND ME! Things can only get better for me now.

Good luck,
Kathy Mccain

Thank you, Maribel and Kathy! I really appreciate your advice and encouragement! Robin

Hello Robin,

Please let me know how you are coming along. Once you make your decision, and are on the road to recovery, you will have more peace of mind!

Sincerely,
Kathy

Hi Robin,

Thank you for your post. I too have had Hodgkin’s and am facing aortic valve replacement along with coronary artery bypass x 3. It was comforting to me to see your message since I was feeling like the only
person with this scenario. My cancer was almost 40 years ago. I am 63 years old. My diagnosis of aortic stenosis was 6 years ago
and all seemed fine till my most recent 6 month check up in June.

Waiting is very difficult. You will be in my thoughts and prayers.

Sincerely
Sherrye

Hi Robyn,

Yesterday I went for my checkup at my cardiologist and found out that my surgery for my aortic stenosis was sooner rather than later. I had radiation treaments when I was 16 years old that contributed to my current condition. At 43 and a mother of 2 young children, I’m not looking forward to this proposition, and I’ve been hunting for information on the internet ever since.

Thank you for your story. I wish you well!

Hi Robin
Adam pointed me to this blog when I asked him about other heart valve patients who had had Hodgkin’s. My story is very similar to yours.
I am a 54 year old man and had Hodgkin’s when I was 15 for which I received radiotherapy. (Amazing the number of hits you will get if you search for Hodgkin’s / Aortic Valve on google). I didn’t really have any symptoms of Aortic Stenosis (I kayaked regularly) until quite recently but I understand that once you start to get them, things progress quite quickly and in the last few months they have! But here is where my story departs from yours – I have prostate cancer which needs an operation. I can’t have the anaesthetic for this until after the heart is fixed so I am booked in to have my aortic valve replaced on 10th July. My big decision is deciding on which type of valve to have – mechanical which will last for ever but require Warfarin or a bovine one that may need replacing in the future but apparently is the better bet if I ever need more radiotherapy in the future.
It is a while since you posted your story on this blog so Robin I wonder whether you have taken that big step? And also Jil from the last entry who appears to have another similar story – have you had yours?
I would like to keep in touch – it’s always nice to know you aren’t the only person in the world suffering!

All the best

Keith
Orewa, NZ

Robin – I googled “Hodgkin’s/Aortic Stenosis” and found your entry. I know it’s been awhile since your entry, but I feel compelled to comment. I’m a 49 year old female, married for 25 years with two adult children. I had Hodgkin’s when I was 20 years old.

Ten years ago I had Thyroid cancer – had it removed and treated and have been fine. Two years ago I had a bacterial infection that went to my bloodstream. One test lead to another and I was told that my aortic valve would have to be replaced (in 0 to 10 years), and that my lung has a bad area. Last year I had a bowel obstruction caused by adhesions in my small bowel. Last Tuesday I had a mamogram, a 2nd mamogram, an ultrasound and a biopsy, and was told that I almost certainly had breast cancer. (All within less than two hours!) The next day, pathology verified that I have two primary invasive ductal carcinomas – one of which is very aggressive.

In each case, the doctors specifically call-out the mantle cobalt radiation I had in 1980 as the cause. Of course, without the radiation, I wouldn’t even be here to have these long-term side effects. I’m grateful, but can’t help but feel a little…well….disheartened.

Three months of chemo starts next week, followed one month later by a mastectomy of the left (bad) breast, another month of rest, five months of chemo (I believe), then mastectomy of the right breast and full reconstruction. I can’t have any more radiation, so they have to take both breasts. So in about a year I’ll have a new set of TaTa’s, a new head of hair and, hopefully, a new lease on life.

I don’t mean this to be a downer. It’s like playing Whack-A-Mole — just keep knocking them down one at a time.

I hope everything is going well with you now. I’ll visit the site soon hoping for an update on your situation. Peace.

I too had Hodgkin’s at age 18 and now 20 years later am facing aortic valve replacement, possibly mitral also. All of this is due to radiation. We (my parents and I) were specifically told that there were blocks made to make sure this did not happen. I just feel really betrayed by the whole medical system and now, once again, I have to put my trust in them for this surgery. I have also had a significant amount of thyroid disease following this also.

OMG OMG I am reading my own life expereinces in all of yours. To both Robin’s and Steve.

I am almost 56. I had a non Hodgkin’s lymphoma at 21. Had large doses of radiation and chemo.
At age 35 had thyroid CA
At age 50 picked up heart murmur and the aortic valve was moderate until now,
I need 2 replaced. Aotic and Mitral valve.
Needless to say I was in such shock.. Ido not want to go thru all this pain again, I have been ill so much and know as you what it is like to feel yucky !
I am very active and exercise, thou I know my limits.

My kids are grown so that is a blessing. Still I would rather not add this to THE LIST of medical issues.

So glad to know I am not alone.

I live in Poughkeepsie, NY but will go to Mesa AZ to have surgery and recovery time. Lived there for 30 yrs. have a huge support system there.
Will come back to NY for the Rehab.

I bought this book the day after I found out and have made it the BIBLE for now. I am grateful for the different blogs, found a surgeon on the surgeon web site already.

If any one expereinced issues b/c of radiation plus let me know.

nyangela1954@hotmail.com is my email also.

Thanks,
Angela Braxton

Well, here we are. At 22, in 1970 I was diagnosed with and treated with the mantle radiation treatment for, Hodgkin’s disease. I am now on calendar for aortic valve replacement at USC, on April 19, 2011 (about three weeks from now. I keep Adam’s book pretty close. I am not feeling very “up” about this surgery because having had the radiation, my Cardiologist…the same one that Adam had, the amazing Dr. Starnes- has said that scarred (was that the right word?) tissue in there can make this …like the OTHER radiated-for-Hodgkin’s surgeries. I also have ankylosing spondylitis which is big on putting calcium in places, too, so this was a double crosshairs.
My RCA was found “by accident” (by prayer) and stented in 2004; but other than that I have been so very lucky…and got 40 years more and they saved my life. I am apprehensive because radiation makes us all “unique” in this. Hope to get back on later to tell you all how it worked out for ME so, like Adam says, at ,east there will be a little MORE personal info for us guys to not be taken by surprise…and fear…about. Hope Adam does a writing on the radiation phenomena; a doctor interview that are on his blogs. Thank you Adam, for your work!

Wow…Reading these stories is deja vu! I was 19 when I was treated with mantle radiation (1989). I’m now 41 years old and have five children. I had an echo done a few weeks ago for a preop and they said I have moderate aortic stenosis. I have no symptoms. I also have been diagnosed with breast cancer (dcis) stage 0. Fluke that we found the breast cancer so early, negative mammograms, negative ultrasound, positive MRI. MRI was suggested by an Oncologist as an after thought. I was researching treatments for aortic stenosis when I found this page and will be talking to someone ASAP about this!!

Robin- or Adam… I also had Hodgkins, in 1970, and this last April had a new aortic valve put in, by Dr. Vaughn Starnes at USC. Amongst other reasons he was specially chosen because he is familiar with the problems radiation for Hodgkins can do to one’s heart. Also an RCA or LCA can be blocking, ossified at it’s OPENING to the aorta… A prayer got that diagnosed for me, it is now stented.There are many other concerns ‘re mantle radiation; read up on it- or choose Dr. Starnes to go in- the is the best!!! And checks out for possible future radiation-caused damage. Just don’t think God does coincidences. Good luck! Michelle Marrs
There

My Husband (Russell)had Hodgkin disease at age of 14. They also did Radiation on him then and removed his spleen also. But Today 9/11 he has been diagnosis with Heart aorta valve disease and They say it was due to this Radiation he had in past.. We didn’t realize this was so common today. But Russell is still scared to death knowing what is going to happen next. They are doing a Arterial-gram on him first, but Doctor said may have to continue to Open heart surgery to repair this problem. I hope and pray all that has this problem can understand back many years ago they only knew to Help safe Lifes was Radiation. I really don’t think they expected this in the future. Or I hope not anyway..

Same Hodgkin’s disease story as most all of you before me. My doctor Is considering to treat me with a transcatheter aortic valve replacement procedure. I am sceptic because of all the calcification of my aorta caused by the radiation. Some say a thoracotomy is the best approach for the aortic valve replacement. Does anyone have any knowledge regarding this. Also, is there a particular hospital or surgeon recommended? Thanks in advance for your input. Scared out of my mind!

My husband is 45 and had Hodgkin\’s 20 years ago. He just had a cardiac cath last week. We found that he has 4 vessels blocked and needs his aortic valve replaced. He is being evaluated at a University Medical Center right now but he feels like he should get a second opinion somewhere like Cleveland Clinic. We are just so scared because of the scar tissue caused by the radiation. Where is the best place to go for surgery?

Well , All has come True so far, As my first comment about Russell’s test and artery gram . We know due to radiation given for Hodgkin’s disease, it has harden the valves and also sac around heart. He is in Hospital today 10-8-11 awaiting Open Heart to replace maybe 2 to 3 valves(aorta , mitral valves) and do 3 by passes on arteries to and around heart.. If any one has had cancer in early 70’s, Please keep a good check up every year on things like this… But no matter what, you can be damaged due to lack of study or acknowledgment in the 70’s and early 80’s of Cancer and radiation treatments. They have and Do know more about it Now than they did back then…We are at UAB Hospital in Birmingham , Alabama. which is one of the best known hospitals in USA.. So we feel comfortable with our Doctor.. but also worry about complications..

Another Robin here, April 2012. I am 58. I had Hodgkins 20 years ago, with radiation therapy. I was diagnosed today with a heart murmur and aortic stenosis. I will go in next week to see if it is mild, moderate or severe. My husband died 4 months ago of cancer, so this is a little much to take in. I would love to hear more about the original Robin’s journey since her post. Thanks to everyone for their stories and to Adam for his book and this blog.

Just found this site. I also had chemotherapy and radiation starting at age 18 and ending at 21. I just turned 50. At 44 I had to have vocal cord surgery for polyps that had developed. At 46 I had surgery to open my left carotid artery and found out my right was completely blocked. Two years later I went in for a stent and woke up 60 days later out of a coma with a 6 way bypass a metal aortic valve and a pacemaker. When they went to do the stent they found all the major blockage and did the emergency surgery. The day after I was doing ok but then they gave me a blood transfusion. My body rejected it and shut down every major organ. I died twice for over a minute each time. The doctors were shocked I made it through. It’s taken me almost two years and lots of rehab, but I am doing very well today. Walking 3 miles a few days a week and working out with weights also. It wasn’t until after all of this that anyone made the connection of the radiation with my heart issues. I would have handled things much differently if I had known this was going on with others who had hodgkins. My dilemma is no doctors can give me an answer on what the life expectancy would be after all this. I played soccer all my life and I feel like I’m into penalty time, you know the ref is going to blow the whistle and end things but you don’t have a clue when. Single dad with two of my three kids still in high school so I really have to make sure I have my ducks in a row just in case. If anyone knows of any more information or a good place to go for information, I would love to know.
Thanks
Chris

Hi Chris
I had testicular cancer in 1970 at age 30. I had a small tumour removed. I was given about 20 radiation treatments as a precautionary measure. I had a heart attack because of a 100% blockage in an artery in 2008. A stent solved that problem. I had my aortic valve replaced with mech valve and an aortic aneurysm repaired in 2010. I never made a connection between the radiation and my heart problems. I have had skin cancers remove (many over the years) in the areas where I had radiation. The doctors claim no connection. My recovery has been smooth except for the warfarin checks. I am sorry to here of your problems but I never considered a radiation/heart problems connections. Good luck.
Frank

My husband is 37 and he has been fighting Hodkins Lymphoma for the past year and a half. He took 6 months of chemo and they said he was cancer free. We went back for a pet scan 3 months later and the cancer was twice as active. His tumor is on the pericadium and now wrapped around his aoerta. He didn’t want to take radiation because of the damage it could cause to his heart. His doctors response to him was, what good is a good heart, to a dead man? Les finished his radiation and had a pet scan, we will know the results Oct 8. He has had complications from his radiation, heart related, and last week he had pnemonia. Please remember our family. I didn’t mention he also a dad of a 14 yr old and 16 yr old, he is a great dad and wonderful husband. It does sometimes feel like your the only ones going through this but we are not. Prayers going out to all who have posted.

Hodgkins in 1977 (I was 15 and a half). Chemo & mantal radiation. Breast cancer in 2009 caused by the radiation – say the doctors. Double (skin saving) mastectomy at UC San Francisco. I just got back from the cardiologist an hour ago, (2012). Moderate aortic valve & MVP. It will need to be replaced – open heart surgery. I have severe asthma and a high heart rate (102 BPM in the AM before activity) and low blood pressure (94/62 today). I am a personal trainer and work out daily. Docs putting me on Digoxin because the other meds would make my asthma worse. It’s soooooooo frustrating to now have this heart issue! I was having a little pity party all by myself. I read all of your posts & I am now encouraged. I honestly thought I was almost alone as a Hodgkins survivor experiencing these new challenges. I’m still fighting back tears but my paradigm has changed because all of you shared. A big hug and thank you to you!

This is a great blog I was lucky to stumble on to. I was 18 when I found out I had Hodgkin’s. Took 9 month regiment of chemo each year for three years. Didn’t work so they gave me radiation. This was 1980-1983. I’m 51 today. Over the years the radiation has played a part in health. I have had 2 vocal chord surgery’s, have one completely blocked artery and the other was opened to 40%. A little over 2 years ago I went in for a small stint and woke up 62 days later from a coma with a new metal aortic valve, 6 way bypass, pacemaker and feeding tube. Couldn’t walk or speak and lost almost 40 pounds. My doctors told me I flatlined twice and they gave me a 5% chance of survival. I’m a single Dad and they had also told my teenage kids that the chances were slim I would come through. When hearing the percentage my 16 year old was quoted as saying ” well someone has to be the 5%”. He was right …….. Today you would not know I had anything wrong. I was asked if I was bitter about the radiation, actually it bought me another 30 years. Although the longterm results are not appealing, they are still ” long term ” results. Live life in hope and not in fear …… Be the 5% !

37 yrs ago I was diagnosed with breast cancer. I was 26 yrs old. Had radiation. I am now being diagnosed with aortic stenosis and told I need it replaced. I am so scared of having this surgery. Has anyone had this surgery and are their procedures that are less invasive.? Can someone live a normal life and duration they would have lived pior to this surgery. I am so confused, worried, and have done so much research. Would like to hear from others on this subject..thanx

Hi Maureen,
I had cancer 40+ years ago. I had surgery and radiation. In 2004 I was diagnosed with aortic valve stenosis and an aortic aneurysm. I had yearly follow-ups. In 2008 I had a slight heart attack due to a 100% blockage of an artery. It was corrected with a stent. In April 2010 I had to have the aortic valve replaced and the aneurysm repaired. The surgery was done 4/28/2010. I had the valve replaced with a St. Jude’s mechanical valve and the ascending aorta repaired. I was leaning towards a tissue valve but the surgeon suggested the mechanical valve. He said that my arteries were that of a 40 year old man(good condition with little blockage). I come from a family with a history of longevity and he felt that the mechanical valve was a better choice(longer life). The only problem I had was the monthly blood work to check my proteome. It is not a big deal now. I am very active-golf several times a week, wood working, maintaining a 10 acre property. The recovery from the surgery took about 2 months. I was back play golf and feeling good within the 2 months. The mechanical valve is loud at night when trying to sleep in certain positions but I have adjusted. I hope this gives you some information that you can use. Good luck.

Hi all
I also had radiation therapy for hodgkins disease when I was 14. I am now 47
I have know I had aortic stenosis for about 20 years. I’ve had yearly echos since diagnosis.
We thought I could wait until TAVR ( trans aortic valve replacement) become more widely available. I had all the work up for TAVR. I wasn’t a canidate for the Edwards Sapien Valve (not enough calicum in the right spots to hold it on place)
This past January I started having chest pain, I had another heart cath and the stenosis was down to 0.82 and the reguargitation was worse also. I was sent for a consult for the Medtronic Core Valve (another TAVR valve) but since it’s a randomized trial Medtronic turned me down. So I am looking at aortic valve / aortic root and partial ascending aorta replacement.
The surgeon said he would only place a mechanical valve do to a repeat operation would be even higher risk when the bovine would have to be replaced in the future.due to all of teh scar tissue from the radition therapy and valve operation.
the extent of the surgery is scaring me. Has anyone else had to have all of that done? I am looking at surgery in teh next 3-4 weeks

My husband had Hodgkin’s disease when he was in his early 20’s and at 44, 1 1/2 years ago he had chest pain. He had blockages requiring coronary bipass and he also had aortic stenosis requiring a valve replacement. Despite Cat scans & echos they were not able to know whether they would encounter significant scar tissue caused by radiation. He had his surgery at Columbia Pres in NYC with Dr Craig Smith. Dr Smith said that when he saw his heart and surrounding tissue, he would have never know he had received radiation. My husband really didn’t have any notable scar tissue and chose to have a Bovine valve. We were also shocked to learn that he had a bicuspid valve. (2 leaflets instead of 3. This bicuspid valve contributed to his stenosis.) still not sure why they didn’t see it on an echo before hand.
I wish you all of the best. It is quite a difficult time in your life but you will make it through. Before you know it your surgery will just be a memory. Best wishes to you.

Hello, fellow Hodgkin’s survivors! I had cobalt mantle radiation for HD in 1977 at age 17 and am now looking at some ugly echo cardiograms over the last few years. My doctor recognizes that there is a large gap between the appearance of my tests and my syptoms and fitness level, but he is pushing me toward surgery for the mechanical valves. Currently I am seeking alternative therapies including vitamins K and D, serrapeptase, magnesium lactate, and Ondamed treatment. Has anyone tried these?
Robin, regarding limiting exercise, my experience tells me exercise as hard as you can while you can. Your fitness will carry you through when you do have late effects from the treatment. I am a little older than you are and I suspect I had much more radiation. Now, 36 years out (who could have predicted 36 years?!) I am certain that my refusal of treatments and agressive fitness program were very beneficial.

Hello Hodgkins Survivors! Similar story…diagnosed when I was 15, and with mild aortic stenosis 10 yrs ago. I am 54 and scheduled for double valve replacement (aortic/mitral) next week. Scar tissue and calcification are the anticipated complications. Only recently, we determined that radiation was the cause. I would like to know of your experience and if surgery went without further complication. I appreciate the past 38 yrs that allowed me to be a wife, mother and grandma, and I will get through this too!! Best of luck to you for many more healthy years!!

mary Jo
I had Aortic Valve replacement May 6th 2013 with a Soren mechanical valve I was off work for apprx 13 weeks. My surgeon thought he was also going to have to replace the aortic root and part of the aorta due to scare tissuse but he did not. He did have to do a paracardial stripping as the sac around the heart was also calicfied causing the heart not to beat properly.
I did have some complications post surgey, I kept getting plural effusions (fluid around the lungs) I had to have several thoracentisis’ after one of the procedures to drain the fluid I had some bleeding in to the plural space and the fluid becoame loculated this caused me to have to have a 2nd surgery to clean out teh fluid pockets anf blood.
that was actually worse than the open heart suegery it’s self. But I am now feeling great and cannot believe the energy I have. all the pain and discomfort I had after surgery was worth it. I would do it again if I needed to. Ididn’t relize how bad I felt until I started feeling better.

Wow! I take comfort from all of the foregoing, so similar sounding stories post radiation. I was diagnosed and treated for Hodgkin’s at Johns Hopkins in 1978 (at age 21), full mantel field radiation at very high doses. I’ll be 58 next month and have always considered myself healthy. Thyroid went on the blink 12 years out, breast cancer and double mastectomy 24 years out, and now – 36 years out, I’ve been told I have only 52% kidney function due to aortic stenosis that has been closely monitored since 2009 by a cardiologist. So, now it’s time to step up to the plate and face the whole heart valve replacement/repair issue. In 1978 my oncologist warned me there’d be side affects, “we just don’t know what they are yet. But 66 treatments with radiation has bought me a pretty good last 36 years. I am bummed because I am very active. Good luck to all!

Comraderie! Love It! I am a thirty-two year Hodgkins survivor this year, diagnosed at age 25, (ruined that year) and then diagnosed w/ blocked coronary arteries and a failing aortic valve at age 50 (ruined that year). Living w/ makeshift surgery of LIMA (Left Internal Mammary) currently feeds my blocked left descending artery and two stents in circumflex. This is seven years later and becoming more and more symptomatic w/ aortic stenosis. Mechanical vs. Bovine is that a decision made when they are in there, based on scarring? Wondering how bad I am feeling, (physical limitations and fatigue) and if should just do the BIG SURGERY and repair a 100% blocked right descending and the valve (s). What do people think about going to the bigger centers for second opinions and/or care i.e. Cleveland Clinic vs. my local Detroit hospitals.

Hi Everyone,
I was quite excited to discover this discussion as I have been trying to do some research on Hodgkin’s Lymphoma and heart bypasses. In New Zealand it seems that very little is known about this link between heart issues, appearing years later, and radiotherapy treatment. Hence, I had difficulty being diagnosed as I was fit and slim and “didn’t fit” your typical heart patient, very little weighting appeared to be given to my history of radiotherapy. My surgeon with his extensive experience immediately recognised that my heart damage was caused from the radiotherapy. Unfortunately they are too busy to ever see you again so I have had little advice that was specifically based on my needs and was treated like an ordinary patient from that point. I was proactive and wrote to my radiotherapy oncologist who researched extensively for me and has provided better advice. She is keen to set up survivorship clinics in NZ which she said are common in America to monitor patients so my situation has triggered a potentially positive outcome for patients who follow me. I was not told about this possibility following my treatment and hence did not spot my symptoms neither did my medical advisors.

I am now 6 months post op from a double bypass and I am still experiencing excruciating stabbing pains which are not localised and therefore I cannot say it hurts when I move to the left I suspect it is nerve pain. I have been back to my cardiologist who did not appear to know but with our small population he is not that familiar with masses of patients in this situation. I was wondering if anyone out there has information on if recovery is complicated by the previous calcification etc from treatment. I seem to be taking a long time to come right and it is impacting significantly on my ability to return to a full time work load – I love my job.
Any advice would be appreciated or any links to potential readings.

Thanks
Chris

Lori,
I’m just finding your post two years late. I am also a Hodgkins disease survivor. I am 49. I had TAVR last November. I would love to hear an update on you!

Hi Everyone I too had Hodgkins disease 20 years ago and was treated with low dose radiation to the chest and neck. In addition I’ve a heart murmur since birth. I am now facing an operation for both my aortic and mitral valves and am being told this i due to radiation. I was interested to read that your doctor said to wait as long as possible. I recently saw a surgeon, head of surgery at large Boston hospital who said the same thing, to wait. This surprised me as surgeons usually just say when should we schedule this.. When I spoke to my cardiologist, at the same hospital he was taken aback spoke to the surgeon and now they both say I should have the surgery now. I am thinking of going back to the surgeon and asking why he changed his mind or did he overlook something that made him change it. Of course I am worried about the repercussion from the cardiologist. What to do

Hello Hodgkin’s Survivors. My nickname is Moe. Please, feel free to address me as Moe, or with my uswr name. Oh my goodness. Many of your stories tell me how BLESSED I’ve been. I am a 40-year survivor of Stage 3B Hodgkins. I was 22 years old when diagnosed. There were no PET scans, no chemo ports, no nuclear medicine, no anti- nausea meds. I underwent a staging surgery and spleenectomy, AFTER a horrifically barbaric 10-hour surgical test where I was awake and had to remain 100% STILL– A Lymphangiogram. Afyer that, in my staging surgery, I was cut from sternum to pelvic bone. My organs and nodes were biopsied. Any malignant nodes, surgically removed. My spleen was removed. I spent 10 days in ICU afterwards, oblivious to everything and everyone except the nurse who tore at my tangled hair, saying she was just going to shave my head, and my sweet Michanel — my husband who walked in on her, grabbed the comb & brush from her, and had her fired. After, I was given a 3-year prognosis and asked if I’d like to go on a study, “be a guinea pig.” I said yes. I had 6 or 8 months of experimental chemo, brought by courier on an airplane, from Houston Cancer Ctr, to Cleveland Clinic of Ohio, every other week. It was called MOPPP, or something like that, the “M” being a derivitive of mustard gas. The oncologist would wrap a red, rubber hose around my upper arm and inject, intraveneously, a large vile of my chemo, ALL AT ONCE. The smell of gasoline & rubbing alcohol & chemicals came rushing OUT of my eyes, nose, ears, mouth, the second that needle punctired my vein. I began vomiting within 5 minutes, and vomitted for 3 days, each week. I lost my hair the first week. AFTER my chemo, I had a few weeks’ break, where I was xrayed & tattooed for TOTAL NODAL RADIATION. They made a lead block for my spine. EVERY OTHER PART OF MY ENTIRE BODY WAS RADIATED, 1st the upper mantle, chest cavity, 5 days a week, for 5 weeks or more. Then a few weeks’ break.
Then, my middle body, 5 days/week, for 4 or 5 weeks. Then, my lower body, all the way from pelvis to toes, 5 days a week, for about 5 weeks. I WAS FINALLY IN REMISSION! ***However, I had a 95% chance of getting breast/brain/bone/
lung/liver/kidney/
pancreatic/skin cancers… plus recurrence of Hodgkins, plus leukemia or lymphoma, and a few more. I forget.
***I NEVER RECURRED, NOR HAVE I EVER GOTTEN EVEN ONE CANCER. I HAVE BEEN CANCER FREE FOR 40 YEARS. I AM 62 YEARS OLD. I KNOW I AM A WALKING MIRACLE.

FYI: I refused to take estrogen replacement therapy, or hormones of any kind, even though my ovaries were fried and I went thru menopause even before the radiation… from the chemo. No one knew of the risks from ERT/HRT back then, ie, breast cancer. I took ONE “Premarin,” and as it slid down my 22-year-old throat, I heard a voice, from within me, telling me to never take another. I never did. Hot flashes ensued at age 22.5 years of age. My thyroid became underactive, so I took RX thyroid meds, and still do. I NOW HAVE SEVERE OSTEOPOROSIS AND MY RIGHT FEMORAL NECK (NOT HIP) BROKE FROM “JUST SITTING, GRADING PAPERS AT TEACHER IN-SERVICE FOR 5 HOURS.” I was tested for bone cancer and misdiagnosed by a physician’s assisstant. I did NOT have bone cancer. My orthopedic surgeon (I chose an orthopedic oncologist, “just in case”), opted for no surgery, since my bones are “toast,” lol. ***Also, I’d already been diagnosed, at age 50 or so, with aortic stenosis and bicuspid valve, all caused by radiation. BUT IT WAS MILD, NO SYMPTOMS. (After remission, I became a dancer in Cleveland area musical theatre, AND a fitness professional, teaching 12 aerobic dance classes per week for 18 years.) I’ve also been a vegetarian for 38 years, with very low fat intake. I also am a teetotler (total non-drinker), and I do not smoke (anything). My cardiologist told me that TAVR TRIALS had begun at Cleveland Clinic, Ohio Main Campus, and that by the time I’d need my aortic valve replaced, I wouldn’t have to undergo open heart surgery, but have it done via catheter thru my groin or a slit between my ribs, under my arm. We moved to FL 3.5 years ago. My first FL cardiologist did echo and nuclear stress test (b/c of broken femoral neck). Still moderate, no symptoms, all AOK. The stress test was unbelievable… like that of a pro-athlete. In 2016, I changed cardiologists b/c my cardioligist’s scheduling dept. kept micing up my appts, times, dates, echos, everything. In Dec 2015, my NEW FL cardiologist did EKG and Echo. He NEVER TOLD ME I WAS NOW AT SEVERE AORTIC STENOSIS! HE NEVER ORDERED A CARDIOVASCULAR CATH. I never learned this until DECEMBER 21, 2016. I’d switched to a new cardiologist in Nov. 2016. Something about the vagueness in that office didnt sit right with me. But, i thought my stenosis was still MILD. So, I found a new doc, and loved him from the start. He got my records from the other doc. He didnt “badmouth” the other carduologist, but within one week of my initial app with him, he did an echo. THAT DAY, he told me I HAD to have a cardiac cath, which was done the Monday before Christmas 2016. I learned that day that my aortic valve must be replaced. Florida, in my opinion, is not the best place to expect stellar medical care: I was already 2-for-2 in a mis-diagnosis of nonexistent bone cancer, AND a negligent cardiologist. SO, I called home to The Cleveland Clinic of Ohio. Their TAVR Dept is reviewing my records. I’m next-daying CDS of echo and cath to them tomorrow. Within a week, by Feb 1, 2017, we will know what the CLEVE CLINIC TAVR BOARD says. My cardiac cath explored “both sides,” on me, for viability of aretries, veins, blood vessels, FOR TAVAR. My cardiologist says they are all clear and he does not see why I won’t qualify for TAVR. Thw report says I “may” have a bicuspid valve, ie, caused by the radiation, resulting in my aortic stenosis.

SO, here I am, praying that I can have TAVAR at Cleveland Clinic of Ohio. They are #1. Volume, safety, success of TAVR is unmatchable in our nation.

That said, I will absolutely REFUSE OPEN HEART SURGERY if they cannot do TAVR on me. I have no spleen, I almost died 5 years ago, from going septic (ICU 6 weeks & ICU step down 2 weeks). My bones are like crumbling cookies. My ENTIRE BODY has been radiated. My body has been through so much. (And, I’ve read how much each of you have gone thru.) I just cannot and will not have someone stop my heart & lungs, saw me open, turn my heart and lungs OFF, put me on a ventilator, and do Open Heart Surgery. NO WAY. And, i could care LESS about the scar, the “zipper.” Ive already GOT ONE runming from just beneath my sternum to my pelvic bone. AND, the hair never grew back on the back of my head from the rasiation 40 years ago. So, pride or vanity does NOT entee into the equation. I cannot mentally or emotionally even consider open heart surgery. I’d go.mad before we even got to the hospital, which will be c a 3-day drive for us. I don’t fly. Ever.

I don’t have symptoms. I think. I have a little shortness of breath, but I suffer from chronic pain due to a student breaking my back in 3 places 1.5 years ago. I walk with a cane now. My broken vertebrae were cemented. I’m allergic to NSAIDS & will not take narcotic pain killers. SO, that constant pain winds me. I’m sure it could be a little of both… a lot from lower back pain, and some from aortic stenosis. I’ve never had chest pains. I DO have a very high threshold for pain though….

I know you all are going to tell me how LUCKY I am to not have gotten any cancers, recurrences, or other problems besides menopause, osteoporosis, and my valve disease.

SO, I’VE GIVEN YOU A “BOOK” HERE. (I’m sorry.) PLEASE, COMMENT AWAY. Please. I value every single word each person has to say.

Thank you all. And God bless each of you!

Adam Pick? Please, do read my post, just posted, 1/29/2017 at 8:25 pm? Please bring it to the attenting of any docs, patients, survivors you think would be interested. ***Oh, I did look into Florida Hospital Orlando AND the exact Dr you interviewed (heart surgeon, head of dept, collaborates on TAVR). I considered going there, even though their ratings and volume are way below Cleveland Clinic of Ohio Main Campilus. BUT HE DOES NOT PARTICIPATE IN OUR MEDICAL INSURANCE FOR OHIO RETIRED EMPLOYEES (OPERS), ie, Medical Mutual, Super Med PPO, billed under PCHS in FL. We ABSOLUTELY COULD NEVER AFFORD THE EXTRA OUT-OF-POCKET expenses, AND A PAYMENT PLAN IS AN IMPOSSIBILITY, even $5 per month. Besides, Cleveland Clinic of Ohio far outweighs FL Hospital of Orlando, AND IS IN-NETWORK FOR US. We will drive there from FL, and have friends to stay with. It’s a no-brainer. BUT, I DO WANT YOUR OPINION, THOUGHTS, AND THOSE OF EVERY OTHER SURVIVOR OF AORTIC VALVE REPLACEMENT,
TAVR ESPECIALLY (BUT, ALSO OPEN HEART).

God bless you & your beautiful family, Adam!
“Moe”

Please, David, read and respond to my post, posted this evening, 1/29/2017?
THANK YOU!

Please, Chris, read and respond to my post, posted this evening, 1/29/2017?
THANK YOU!

Hello Donna. I just saw your post, 3 years later. Did you end up at Cleveland Clinic of Ohio? PLEASE, READ & TESPOND C TO MY JANUARY 29, 2017 POST?

Karina, it’s Sunday, January 29, 2017. I just read your post
Please, read and reply to my long post from this evenimg, January 29, 2017? THANK YOU. YOU ARE IN MY PRAYERS!

Hello — Please, read my January 29, 2017 post and comment? THANK YOU & GOD BLESS YOU!

Ohhhh, Lori. It’s now 3 years after your needed surgery. Can you please read & reply to my January 29, 2017 post? I pray you are well, fellow survivor.

Susan, I’m just finding YOUR post, a year later. Can you please read and reply to my January 29, 2017 post? It’s a long one, but I pray you are well and can find the time to read it and comment. THANK YOU & MAY GOD BLESS YOU!

Maureen, my name also is Maureen, and I just read your 4-year-old post today, Sunday, January 29, 2017. I, too, am SCARED TO DEATH. I just will NOT undergo open heart surgery. But, TAVR, I would do. Can you please read my post, posted this evening, Sunday, January 29, 2017? I would value your opinion, and hearing about your experience, what you chose to do, and what you think of my situation and “NO OPEN HEART SURGERY” mindset. Thank you! God bless and keep you healthy.

Hi Karla: I was wondering if you had any luck using serrapeptase. I have severe aortic stenosis and my cardiologist is pushing for surgery despite the fact that I have no symptoms. I’m taking 1,500,000 SPUs of serrapeptase daily along with K2 in both the MK-4 and MK-7 forms. I’ve read a lot of positive things about serrapeptase and I’m hoping it will remove the calcification from the valve. Thanks!