While the forum discussions have been up to now primarily devoted to helping those who are newly diagnosed or currently in treatment, we have been monitoring and are aware that an emerging group of people need to share ideas and support; those lucky enough to get through their cancer experience with successful treatments, and who now, many years out from treatment, are having complications related to that treatment.

To provide some ideas for the discussions in this forum, I will put a few posts up over the next week that look at my own experiences as an example. We all know that the treatments that we endure have consequences, and that still being on this side of the grass 5 years, 10 years, or more out is a blessing... but be assured these treatments have consequences of their own. And our treatment facilities and our oncology professionals are not so concerned about us years down the road. We can talk about why this is as well.

My personal list of complications at 15 years out from the completion of treatment are; acute xerostomia, dysphasia, carotid artery stenosis from radiation induced scar tissue, esophageal stenosis, loss of ability to control the right side of my face and mouth, bario-reflex disfunction, sleep apnea from mucous secretions, and more. Some of these are seriously life altering, some are aggravations, some are simple coping adjustment things to deal with.

Before I start on some of these let me relate a quick anecdote about a conversation I had with my radiation oncologist Dr. Kian Ang who we recently lost to cancer. We were at an oncology conference where we were both speaking, and having his ear for a while, I decided to rail on him about a litany of complications that his treatment had left me with more than a decade out, and which had nothing to do with my cancer. Patient ever with my long windedness, Kian listened quietly as I went through the quality of life issues, and serious medical issues that I faced as a result of our original time together. 20 minutes into the conversation I had the main topics out and was ready to detail things further. Kian stopped me. He said "Before you continue, I just want to ask one question Brian, is it completely lost on you that you have to be ALIVE to have these complications?" Well, that clearly put things in perspective for me. It could have so easily turned out very differently, with me on the other side of the grass all those years ago. I am so very thankful to be here today, and to have bought with those difficult treatments a decade and a half which I feel I have put to good and meaningful use. So as you hear about my issues, please do not think that I am lacking in appreciation of how lucky I am, nor my taking any of it for granted.

I will start talking about the one that is little understood, and often difficult to diagnose, bario-reflex disfunction. It essentially means that my body's ability to control my blood pressure and my heart rate, has almost completely become non functional. This has consequences which can be life threatening. It is a result of of radiation to a small group of micro nerve fibers that are located near the carotid artery notch, and who are tasked with sensing your blood pressure and telling your body to compensate up or down as they do. Sitting still, my blood pressure can go from a dangerous 160 over 115. to 90 over forty all in a matter of minutes. This is real fun and the long-term consequences of it are scary. This started about year 13. More later.

Great idea! Thank you, Brian.

I have posted recently about dental complications (5 years out). I was concerned several times when I saw that my post pushed questions from those recently out of tx further down the list.

This will be of great interest to me, and I fear, also some frustration.

Lottie

Brian,

I agree, a great idea!

I also have dental issues 8 years later, which are different than the issues I and others had while going through treatment. Having a separate forum to discuss these and other long term issues is a great idea.

Thanks!

Good idea Brian,

I have the dental issues wlso after 2 years out from radiation, and a few others that effect QOL.

Thank you, Brian. This new forum will be an excellent resource and "shoulder." I think that newly diagnosed patients and those who have completed treatment in the past several years will also benefit from long term survivor stories.

I too am thrilled to be here now to share, but in retrospect I do wish I had pushed my RO to discuss potential long term effects of my radiation. When I asked about long term effects I was stopped short by his answer, "We're here to save your life." That he did and I am forever grateful, but that does not negate the challenges of living now with the long term effects. Had I known then what I know now, I would have moved forward with treatment and started research into how I might forestall future radiation-caused maladies. I do know that many, if not all, effects might have occurred anyway, but I would feel better now to know that I had done all I could or was willing to do to prevent their occurrence.

I look forward to participating.

I really appreciate this new forum, too, as my husband is having a number of issues that are results of radiation and subsequent surgeries (no recurrent cancers). Once you get through the 5th year, you are somewhat on your own. For those who have the good fortune of being long time survivors, finding solutions to these issues is frustrating. This is new territory for many doctors.

It will be helpful to learn about others and how they cope and also have some ideas on what MIGHT be on the horizon. Thanks for starting this, Brian!

Brian, it sounds like you've been through the wringer. I am curious about your barrio-reflex dysfunction. I received a diagnosis of dysautonomia which is similar but extends to all autonomic nervous system functions like digestion, breathing, insulin mgt, protein synthesis, hormone loops, muscle tone, bp, heart rate. I have never had tests that confirmed but everyone points back to brain stem issues from radiation fibrosis. I also have damage to one lung causing extra secretions like cystic fibrosis.

I think the unbelievable part of all this is the doctors incessantly ignoring the symptoms and chasing a diagnostic code. The truth about widespread fibrosis/nerve/vascular damage from radiation causes very sporadic or random problems throughout the body. I am happy to be alive and I did sign all releases knowing there were risks but I also believed there was an underlying assumption that the people subjecting me to the risks also had experience and a plan of attack long term.

I have found the concept of "aftercare" is more of an afterthought. I have tried to encourage aftercare centers much like what the Livestrong Foundation was helping get started with their Centers for Excellence and to some degree the Livestrong at the Y program. Having such recovery oriented centers could be staffed by NP's or some PA's with kinesiologist type therapists/doctors to work on getting all the biomechanics re-established from the destruction of soft tissue throughout the body from chemo and radiation.

Yes tear me down and kill the beast but please...help me build back up from all aspects of life.

Ed

Great idea Brian!

One of the issues that Alex and I face is that we have been "cut loose" from the health system 3 years out from treatment, so that when we go for the obligatory 6 month check up the specialists are only interested in examining Alex for recurrence and have no interest in hearing about the issues that need addressing. To add insult to injury, the RO infers that Alex should be thanking his lucky stars that he is alive and that these issues are inconsequential compared with what could have happened. The RO also shuts Alex down by inferring that his issues are unusual or unrelated which makes him feel like a whinger or a hypochondriac.

Consequently, Alex has just stopped mentioning it which of course is exactly what the RO intended and does not help Alex's situation.

Alex is still horribly underweight, still unable to eat solid food in any meaningful way, remaining teeth have now all fallen out or broken off, fatigue is still an issue, he oscillates between "foam" and "desert" in terms of saliva, and has intermittent pain from peripheral neuropathy.

The problem seems to be that no one will take on these adverse events and try and solve the issues. The oncology guys (ENT, RO and MO) think their job is done and the general physician and regular dentist don't feel they are qualified to deal with it. Access to speech pathologist, dietician and oral surgeon is severely limited and we are in line behind the people currently undergoing treatment who are in more desperate need. Whilst we understand this, it is very frustrating and I notice Alex doesn't even try to talk to them anymore (we see them on "group hug" day every 6 months). Not a good way to address the issues.

At least an opportunity to discuss issues here will give us an opportunity to explore possible solutions whilst not feeling like freaks or complainers.

Having said all that, I don't think we can input much to your issues Brian but would love to hear how you and others manage your issues so that in the future, we at least have a starting point that isn't behind the 8 ball to begin with.

This really is a great idea, Brian. The long term effects of surviving cancer do not seem to be anyone's specialty in the medical field but they are issues that need to be addressed. And it seems that this is the best place to start - with those survivors who are currently experiencing it. It would also help caregivers, to have some idea of what might be ahead, health-wise and how to cope with it. Every time my son has some health issue I have to wonder how it might be connected to the after effects of his cancer treatment.

WOW Brian. This is exactly what I am looking for. After over 5 years, I'm experiencing things worse now than I did while having treatments and several years afterwards. It's bedtime now, but will write more and ask questions of others later this week. I think this type Forum will help me and others. I've written you, Christine, and Eric about some of my problems, and will have a place now for others who may have similar problems and can make suggestions. Thanks so much.

Julieann

yeah!

This certainly helps to explain my husband's BP issues over the past few years.

His dysphagia issues have gotten to the point where aspiration pneumonia (his 3rd episode in the last few months) landed him in hospital ICU. He's back on PEG tube feeding after all these years.

At 5 years out, when we asked the radiation oncologist about long-term effects, all he said was "increased risk of lymphoma at around 10 years out." Did they not know about all the long term effects of H&N radiation back then - or did he think he was being charitable by not telling us what was ahead?

Thank you so much for this new forum, and THANK YOU for the information about blood pressure. My doctor and I have been stymied as my blood pressure has gone down while my weight has gone up (slightly), and my activity level has remained static.

In 2004 I had "old style" radiation to the left side of my head/neck, and in Jan 2008 I had IMRT to the right side.

I am alive. I am very very thankful and now that I am 5 years out from my second cancer - 9 years from my first, I am feeling as well as I ever have and am working at 'moving on past this' but the side effects keep me in the cancer realm.

I very much look forward to participating in this lucky forum (perhaps the name of the new Forum could contain a word to indicate how lucky we are).

I have copied the article about B.P. and sent it to my doctor. At this point I am taking about 1/2 of the b.p. medication that I was about 3 years ago and we had no idea why. THANK YOU FOR THIS. I don't know what we will do with this and how to proceed from here but it is great to get a handle on the WHY and to know this is a relatively common side effect for the fortunate ones.

Donna

Excellent addition. Definitely should help motivation to change and not stay stuck.


KC

I look at what radiation has done to me and while I wonder why no one told me what to expect, I realize there are three issues at play.

1). I was Stage IV - twice, why talk about long term issues when they don't know if I will be here to complain about them.
2). Every cancer patient has different bone densities, cancer locations and other physical attributes. They cannot predict how someone will react.
3). I had radiation TWICE, and there are no studies, etc on this. Things like permanent fatigue are common amongst the few patients my R.O. Has treated twice, but other than that complaints are apparently all over the place.

Bottom line is that I would not have changed my course of action even if they had listed every possible problem. I am happy to be here to complain!

I would like to hear from others with long term rad tx side effects.


Donna

Brian,
One caution I might throw out there is use definitions for medical terms for those of us without the medical background. I know I have issues but am not at all sure what the doc's would call it (or what you just described you have issues with). If you include definitions we may recognize our issues and hopefully explain to the doctors what we may have, too.

My biggest help through the last few years was going through a "Swallowing Boot Camp." I thought I needed my throat dialated again but what was happening was food was getting caught up on a shelf in the back of my throat. By working on strengthening my tongue muscles and forcing swallowing by not relying as much on washing down my food I was able to work around this issue on some foods. Over the 11 + years and washing my food down with water my muscles were not as strong. I no longer panic that I may be chocking and work on forcing my muscles to work harder. Took some of the fear away and one less surgery. - Kris

Kris - Maybe this recently updated list will help:
http://web.utk.edu/~aalix/abbreviations2.html

Looks like you need to copy and paste the link into a new window.

Hi Kris! Hope you are doing well.

I am curious about your boot camp. Where was it. This is what I have been looking for but my SLP says if I am not aspirating all the team nothing can be done.

The baroreceptors are sensors in arteries, veins, etc. that relay information to the brain. Veins are actually smooth muscles. Compromised nerves, brain stem damage from fibrosis can affect the entire baroreceptor reflex response by increasing or decreasing the blood flow/pressure beyond what is necessary or a reduced nerve signal response by the autonomic nervous system.

Radiation can damage any muscle in the body by restricting blood flow are scarring in the nerve casing. These along with myelitis, inflammation of the spinal cord, are the main causes for most neuromuscular problems we face lifelong. Muscle weakness whether eating, breathing, voluntary or involuntary movements is caused by vascular, nerve myelin damage or myelitis reasons.

A very key piece is the nerve sheath is a fatty layer around the nerve. One theory is it gets burned up during radiation and the body floods the area with cortisol and scar tissue. Low fat or no fat after treatment can easily exacerbate symptoms.

Ed

Thanks Kris, you give me great hope with my swallowing. My problem is just as you describe, food getting stuck on a shelf, and my muscles not being strong enough to force food down so I have to cough it back up, unless it is soft and slippy. I am 22 months out from treatment and have had very little improvement for many months so I was beginning to accept that it probably wont get much better. Then at my last checkup earlier this month a new doctor told me that there was no reason why I should not improve providing I exercise the muscles and force the food a bit (he was the first doc to tell me this!). So since then I have made more effort and I think there may be a slight improvement already. I realise that I have got into habits of eating only easy stuff, so not making the swallow muscles work. I think early on I got so disheartened it was easier to avoid the upset. Swallowing boot camps should be available for all!

I'm 3 days shy of two years cancer free and still have minor issues. When I get choked it's usually right after doing something stupid like a huge bite, no water (or beer) or getting cocky and trying to eat something I KNOW will give me trouble. Two things that have helped are what I call the weight lifters swallow: breathe in and then swallow overly hard like you're forcing something down. Also a slight turn of the head to one side sometimes helps.

Good luck and keep fighting!!

Saxicola have you looked at the iSwallow app. It has all the swallow exercises the SLP would use. There are videos so you see how it is done. I just try them and the one that is the hardest is that way because something isn't working right and I do that one throughout the day for a while. I could not swallow any food for weeks a year ago and restored it almost completely.

The "shelf" is probably the throat pockets that are supposed to prevent food from going into,your airway. Food has always stuck there since halfway through radiation for me. I feel like a cud chewing cow or rather bull sometimes hacking it up over and over till it goes down. I have learned to breath then swallow.

Ed

Thanks for creating this forum. My husband is an almost 7 year survivor of stage 4 oral cancer. He underwent surgery to remove a neck tumor, radiation and chemotherapy. At my husbands annual exam and blood test we were informed that he is deficient in Vitamin D. He immediately started the oral Vitamin D otc as recommended by his Dr (general practicioner). The next blood test continued to register the Vitamin D defeciency. His Dr put him on a once a week Vit D2 50,000 units tablet and he will have another blood test after 4 weeks of this. My husband is a very healthy eater, gets plenty of sunshine and exercise and we can't understand the vitamin D issue. Has any other survivor experienced this?

Hi Ed, yes I tried iSwallow awhile ago and it corresponded well to the exercises I got from my SLT, but over the months I slipped out of doing them because I wasn't seeing any results. However, I will have another go and see if I can be a bit more determined. I know what you mean about the 'chewing the cud, my added problem there is no back teeth so it can be a long process! Sally

Thank you Brian for this forum,and for all you do for all of us. I haven't posted for years, but looking for some answers I have ended up back here. I am 7 years since my treatment. I am having problems with BP, and have an MRA scheduled for this Monday for stenosis in carotid artery. My bloodwork has been good, so I was curious why this was happening. I even asked the doctor if it could be related to radiation I had received. He just said that was a good question. Reading your post and doing some research has helped me to see that it could be a result of treatment. I'll know more next week, hopefully. But wanted to thank you for sharing.

If your blood pressure is all over the map, even though you are sitting still, that is one issue some of us have. The more common issue is chronically low blood pressure and faintness as a result. Two contributing facts are scar tissue formation in the carotids (no good solution as stenting them does not have the same impact as stenosis from fats) and the destruction of the small nerve fibers near the carotid notch which are the sensors that tell your body what your blood pressure should be. This is a many years out of radiation issue, and highly dependent on number of grays and how heavily this area got nuked. The resulting syndrome is called barrio reflex disfunction. Most cardiologists have never even heard of it. But it is peer reviewed published on, and in the world of head and neck cancer patients, fairly well understood that it can happen. Again no workable fix that I personally have found.

Yep, my mom can relate to blood pressure issues and faintness. She's been dealing with that for about four years. Swallowing, burning mouth and dental issues due to radiation are chronic, nerve and hearing problems from chemo are prominent and the latest issues include speech problems and an inability to eat orally resulting from a partial glossectomy. I'm not gonna sugar coat it, it sucks...but my mom has a life that she is grateful for and I'm thankful to still have her.

No question it's an arduous road, but, as noted, the option was to not be here. As a result of your battle, Brian, you've created a wonderful organization that's helped thousands. That's a pretty amazing thing. Thank you.

Since today is my son Paul's 7 year anniversary being cancer-free, I asked him if he had anything memorable that he wanted me to pass on to others, here. He said he had nothing inspirational . . . just lots of gripes which I quote here:

"1- teeth brushing makes me gag
2- shaving is horrendously inconvenient around scars and with stubble that grows in different directions.
3 - teeth damaged by enamel loss are wrong shape to bite your nails with.
4 - you'll always wonder if the cx or the treatment are the cause of any health issue that you deal with later in life."

I can think of some answers to the above, but I think it might be better if it comes from someone who has had similar issues or the CG of a long-term survivor.

Re the Baroreflex dysfunction. This hit home as it must be what Bill is dealing with. We have had every test to make sure it is not something else and nothing has been conclusive. Glad to know that there may be an explanation since his symptoms follow exactly the known results of the baroreflex failure/dysfunction. Of course, none of his physicians have brought it up.

Thank you Brian and OCF...once again you are my resource and support system.

Hi everyone.
I'm 5 years plus after treatment, which included chemo
( 2 rounds cisplatin ) and 32 radiotherapy @ 60Gg.
No recurrences.
But as the years go by, I just feel worst and my overall health state seems to worsen every other month.
The pain to the neck area is bad, and since I had a resection of a important group of muscles on the right side, I have a permanent contraction of the shoulder muscles. I developed a bad cough and mucous galore. Experience tinnitus and mild neuropathy on one arm.Lets all share and learn.

Hi to all.. I have been absent from board for a long time. I too understand the long effects treatment has left me with after 8 years. Thanks Brian for making this new area for all of us to learn from.

My new challenge is jaw decay, or dieing, infection. Looking into this now. Seems to be some confusion on what should or should not be done for now.. I find it very interesting that my dentist is concerned and My new surgeon is not to concerned. Leaving me really wondering. I hope to make contact with my original Surgeon and see if I can find out what really should be done.
Well, that is it for now.. take care all

Good to see you again DM32ASA. I hate you are now dealing with this but the good news is there are a lot of advancements in this area. If your surgeon isn't concerned please find someone who is. Maybe have your dentist make some calls. Get on it fast and hard and get something done. I assume you are speaking of ORN.

Current trials are under way in Europe that combine a lot of things tried here. Things such as HBOT, Pentoxyfilline/tocopherol with a bisphosphanate are among things working. Even some studies by PerioSciences found improvements by accident when trying to help xerystomia.

You are in a state that understands this very well. Be your own advocate.

Best wishes.

I am so happy to have this forum. I am three years post-treatment, living with daily reminders of my cancer. My oncologist has also reminded me (when I tell him about side-effects) that I am alive after all. And I know that, but dry mouth, limited mouth opening, one paralyzed vocal chord, occasional thrush, more than occasional mouth sores�these things take their toll. This site was tremendously helpful to me when I was going through treatment, so I am certain it will help with these long-term issues. Thanks, Michelle

Thanks Uptown, Yes, I am trying to get more info. The concern here is the amount of radiation to jaw bone. At least that is what I am getting and scraping the bone to clean the area. Don't worry the one thing that this Cancer has taught me is to do my own thinking and research. My Dentist has consulted with another Cancer Dr. and they say to go in and clean.

Thanks for your input!

Not knowing all they have already tried, I'm a bit concerned when I hear "scraping the bone". Hopefully you are seeing a dental oncologist and being treated through a major cancer center. ORN is something that needs to be treated correctly, diligently and by someone with experience. Without addressing the reduced blood flow in the area, any surgery can cause significant issues.

Like Brian, I'm a 15 year survivor and have all the issues that Brian spelled out ---- acute xerostomia, dysphasia, carotid artery stenosis from radiation induced scar tissue, esophageal stenosis, loss of ability to control the right side of my face and mouth, bario-reflex disfunction, sleep apnea from mucous secretions, plus a few more -- hearing loss and speech impairment.

Yes, there should be physician specialist/consultant support for us long-term survivors, practitioners who know what the issues are. This is sadly lacking. Over the course of my 15 year survival, I've had to fight to communicate my issues. At times I've had to find answers to my issues only through my own research. Some doctors were totally uninterested in hearing that my issues were related to the treatments to my cancer.

Like Brian, I am grateful to be alive. Best of health and happiness to everyone.

Quick update.. I have been gone from the board. I am now heading into a jaw replacement on the right side. The new bone will come from my leg. I will get more details later. I will be going for pre-op Oct.23. Surgery Nov.3 I was wondering if anyone has anything they might want to share about this proceedure. I say hello to you all.

Diane

Im very sorry to read you are having a major surgery coming up! A mandibulectomy can be a difficult surgery. Its very intricate and can take 8-12 hours in the OR. Recovery can also be quite long. Expect to be in the hospital at least one week with most patients being there 10 days to 2 weeks (depending on insurance). It will take a while to bounce back as you have not just your jaw to heal but also your leg and relearning to walk on it while it is impaired.

If you are going to get a trach ask for a possey muir valve to make speaking easier. Just like going into rads, eat now. Your ability to eat may be compromised for a while making eating your regular diet impossible.

Make sure to get your doc on board about pain meds. This can be a very painful surgery. Many nerves will be throbbing and you probably will be hurting pretty bad (at least I was). Best to ask for 2 different ones to be prescribed so you can flip/flop between them so you never have to wait until its "time" for the next dose. Neurontin or gabapentin works very well with this surgery as you probably will have some nerve pain.

Just remember its all just temporary. If the surgery needs to be adjusted down the road then you will have further reconstructive surgeries. Its necessary to wait for at least one year to allow all the swelling to go down and things to heal.

If at all possible try to have someone stay with you even if you are sleeping your days away. Every patient should have their own advocate to be there to speak up for them and make sure everything is ok.

Best wishes with everything!!!

Thank you ChristineB. Hello to you as well.

Oh yes, I will make sure of the pain meds. I was guessing it would be very similar to what we all went through before.
I have the Gabapentin for nerve pain due to shingles. Thanks for the heads up on the Trach, there is some talk it may happen. I have extra lbs. on so ready for the loss.

Sorry to hear about the shot jaw. It is a grim reminder that cancer treatment is extremely harsh on the body and many years later long term side effects can appear.

Hope all goes well; many here have gone through similar procedures and here to advise you.

Thanks donfoo,

Yes it is a reminder. I often wonder how many more..?? I still count my blessing though. I am still here I have seen 2 grad kids graduate. I also was just told I will be a great grandmother in June!! How cool is that? It is all worth the pain.

Well, I am back. Surgery went Ok, but still healing. What little neck tissue I had is now gone. I had other teeth removed end of April to make way for denture plate. Now left side is not healing from that.. may have to go and have bone scraped and go back into the HBO chamber.. I keep hoping his nightmare will end.. I guess not!! The thought of a 2nd Jaw surgery is really pushing me over the top.

Jewells, I feel the frustration you are going through. This is not a fun game. For myself I can only take one step at a time. Give him a hug, cry with him & go to the next step.

Thanks for posting your update. Its been a while and I had hoped everything was well.

Ive been thru the scraping of the bone and its really not that bad. I chose to stay awake and just get a local for the procedure. It took maybe 2 minutes at the very most for the oral surgeon to scrap the bone and put a couple stitches in. Honestly it was one of the easier procedures Ive been thru. I would rather do the bone scraping than HBO any day.

Hang in there, you are past the worst of it.



PS... I moved Jewells original post over to a new thread in the Introduce Yourself section if you want to leave a reply for her.

My husband of 14 years post treatment. Has been having problems controlling his blood pressure. Did you ever find any solution?

Carolyn,

Welcome to the forum. You have posted on a really old thread and it’s likely the person your post is meant for will not see it. To get some response to your question, maybe you would like to re-post under the thread ”Introduce Yourself” and include some information about your husband’s diagnosis and treatment. Hopefully, someone will be able to respond.