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[…] Multiple Myeloma Radiation Side Effect […]Reply
I had chemo-radiation for base of tongue squamous cell carcinoma in 2011 and so far no recurrence. Soon after completing radiation I developed a fairly large and bothersome lymphedema on the right side of my face and neck. This slowly dissipated over a month with a lot of help from a physical therapist who was learning about facial lymphedema on the job!
During that time I read several articles by Delanian et al regarding the use of pentoxifylline (Trental) and vitamin E to combat radiation fibrosis in breast cancer patients. the results were promising so I started on this regimen and have continued . I do have obvious radiation fibrosis with reduced mouth opening, moderate dysphagia, stiffness of neck muscles and painful muscle spasms. I will never know for sure whether this regimen helped but I have had no side effects and my symptoms are mild compared to others I have communicated with.
It is said that this regimen can even help patients who have well established RIF.
Dr Michael Stubblefield does mention this as a possible help but with the caveat that the studies are small.
Something to consider.
Thanks for your post. Your therapy of pentoxifylline (Trental) and vitamin E was discussed, I think, in an online group I belong to called Radiation-induced Lumbo Sacral Plexopathy (RILP). There was discussion of Dr. Stubblefield as well. As if to say that Dr. Stubblefield is the doctor out there who understands the most about our side effect-radiation fibrosis.
I think it is interesting that your example (base of the tongue), the study linked below (breast cancer) and the RILP group (the lower back and related areas) all experience radiation damage and we all look for some form of therapy to help us.
Question- the study of pentoxifylline (Trental) talks about a problem with patients and nausea. Did you experience any gastro-intestinal issues? If so, what did you do about them? Just curious.
As suggested in your web site briefing, I’m writing to you for ideas. etc.
About six weeks ago I completed a 28-session of IMRT radiation treatment for aggressive prostate cancer that was viewed by the doctors as still being localized within the prostate. Post-treatment I had the usual side-affects– bladder and intestine emptying events coupled with fatigue. I also began having what appeared to be muscle ache-pain in my right buttocks cheek and right hip area. It has become progressively worse; when I walk the pain with each step is akin to getting hit with a baseball bat. I get occasional waves of nausea which ya just live with until they go away.
About three weeks ago I underwent brachyotherapy, radioactive seed implantation of the prostate. Since that procedure I have been experiencing the same pain mentioned above, except more intense. I’m taking the heavy duty arthritis OTC pills (625Mg variety) which do reduce the pain somewhat.
I’ve tried electrical stimulation of the sore areas with no noticeable results. Earlier today it seemed as though the treatment exacerbated the pain.
During a search for probable causes I literally stumbled upon the term “radiation fibrosis” (RF). Some of the presented symptoms of RF match what I’m going through.
IF I do have RF, I’d appreciate any advice and counsel you could provide. Being an active individual encumbered with this pain is a big downer.. can’t do 25% of what I normally do. Frustrating. And, no, none of the folks in the radiology department, or my urologists, advised me about the potential pain.
Thank you in advance for whatever assistance you can render.
Frank S. GattolinReply
I am sorry to read of your radiation fibrosis. Several things. First and foremost, I believe that your best chance at healing is a therapy called Hyperbaric Oxygen Therapy aka HBOT. Depending on where you live, there will be clinics near by. Maybe even a hospital that provides this therapy. The best thing going for you right now is the fact that your radiation (damaging therapy) was reasonably recently. Weeks is recent. Months or years is not. Don’t wait.
Just as important, if your M.D. oncologist, medical professional will write you a perscription for HBOT, your insurance should pay for it.
Let me know if you have any questions. Good luck,
Hyperbaric oxygen therapy for the treatment of the late effects of radiotherapy
There is a risk of serious complications developing after radiation treatment (radiotherapy) for cancer (late radiation tissue injury (LRTI)). These problems can be very difficult to resolve and there is some doubt as to the best approaches to treatment. Hyperbaric oxygen therapy (HBOT) involves breathing oxygen in a specially designed chamber. It is used as a treatment to improve oxygen supply to damaged tissue (cells within the body) and support healing.
The aim of the review
We searched medical databases for clinical studies aimed to find the evidence for or against the ability of HBOT, compared to either no treatment or alternative treatments, to improve these complications. The evidence was current to December 2015.
What were the main findings?
There was some evidence that HBOT improved outcome in LRTI affecting bone and soft tissues of the head and neck, for radiation proctitis (inflammation of the lower part of the large intestine caused by radiotherapy treatment) and to prevent the development of osteoradionecrosis (bone death caused by radiotherapy treatment) following tooth extraction in an irradiated field. There was no such evidence of any important clinical effect on tissues in the nervous system.
Quality of the evidence
The evidence was generally of moderate quality and limited by small numbers of participants, poor reporting of methods and results, and uncertainty as to the exact degree of improvement with HBOT.
What are the conclusions?
The application of HBOT to selected participants and tissues may be justified. Studies of radiation injury suggest that other tissues are also likely to respond (e.g. bladder). Further research is required to establish which people may respond and the best timing of such therapy. A study of costs would also be useful.”
Thank you for your reply. Beginning Monday, 05/06/19, I’m going to contact my radiologist and discuss the RF condition with him and request a HBOT prescription from him.
Thank you again, I’ll keep you in the loop with the hope whatever I learn can be passed onto others to help them out.
Anything you can report, good, bad or ugly, will be greatly appreciated.
Had HL IIA in ‘87. Symptoms started in ‘02. “Best Drs. in the world “ just shrugged. Found Dr. Stubblefield on my own about ‘11 after many hrs of internet research. I think he had just recently come up with the term RFS. Best Dr. I have ever been to. Long story short, I am on oxygen, can barely walk, am in extreme pain, and prob have something wrong with every cubic inch of my body. He told me right away that I would end up like an ALS patient, which is happening. I hope other people don’t progress to this stage I’m hoping no one else has to deal with this. Good luck and God bless.Reply
I am sorry to read of your challenges. I have heard many positive things about Dr. Stubblefield from members of the RILP group I belong to on FB.
Hello – – I am a 31 year Hodgkins survivor, stage 2A. Mantle Radiation and abdominal radiation. Open heart surgery at age 50 (happy birthday) to replace aortic valve and one bypass ( due to calification). After surgery and months later, I had several instances of severe pulmonary edema – and several thoracentesis procedures done. Thoracic surgeon and pulmonary specialist have both determined this is “trapped lung” – a rare side effect of open heart surgery. A fibrous peel has developed on both lungs – they say due to the fluid accumulation from the surgery. They tell me the only solution is to have a surgery to remove the peel which will allow the fluid to leave the lungs allowing the lungs to return to normal function. I had pulmonary edema occur after a C-section in 1998. It cleared up with lasics. Currently, the fluid remains stable but has accumulated in the lower lobes. Some days better than others with breathing upon exertion. But no unbearable. The doctors tell me thoracentesis procedures are of no good now – because after the procedure – even though a few liters of fluid are removed – the fluid returns within hours.
Is this lung complication actually a result of pulmonary fibrosis undiagnosed ? I am 52 years old. I do not plan to undergo the surgery. I have researched and still cannot find any information linking this complication with Hodgkins late side effects & pulmonary fibrosis. Thank you for any advice or information you may have.
I am sorry to learn of your health challenges though you seem to understand your challenges as well as can be expected. I will be honest/direct with you. I cannot answer your question “Is this lung complication actually a result of pulmonary fibrosis undiagnosed?”
The complication you describe certainly sounds like a side effect but it is impossible for me to give a specific answer without more complete history, imaging studies, etc.
Let me know if you have any questions.
Hang in there,
I would like to know if there is any treatment for RFS. And if physical therapy can help it.
The short answer is yes, a person can heal or at least slow the damage but it all depends. The answer to your question depends on 1) how much radiation the patient sustained, 2) when the radiation was given and finally 3) where is the fibrosis occuring.
For example, hyperbaric oxygen therapy has been shown to heal many types of radiation damage. I tried HBOT years after my own fibrosis and did not experience much healing. So it depends on several factors.
Can you tell me more about your particular situation?
One of several therapies is discussed in the blog post that is “recommended reading.” HBOT-
Hi. You mentioned there are ways to treat fibrosis and bring quality of life back. Pls recommend some treatments.Reply
Several things. QOL for radiation fibrosis depends on 1) where you were radiated and 2) when you where radiated. In other words, I will list several therapies that research and my experience say are therapies but whatever QOL you realize depends on 1 zn 2.
1) physical therapy- while my nerve damage is extensive generally in my lower body, I can improve the function of certain muscles by exercising them regularly. This can take weeks but it can be worth it.
2) HBOT- I learned about this therapy and tried it years after my radiation. I felt great the day of the therapy but the benefit did not last. If your radiation has been relatively recent I would find a clinic that provides this therapy ASAP. Further, your health insurance should cover this therapy if your oncologist prescribes it (according to studies.)
3) Acupunture- I underwent local radiation for a lesion in my c5- I developed xerostomia and dysphagia (dry mouth and difficulty swallowing). I underwent acupuncter for about six months and continue to do the Shaker exercise daily- both forms of radiation damage have improved.
4) vitamin E and l-carnatine- these supplements have been shown to improve certain typs of fibrosis-
I hope this helps. Hang in there,
Can anyone tell me which doctor I should see for treatment for radiation fibrosis? My oncologist kind of brushes it off as something that just happens. I haven’t seen my radiation oncologist since I finished treatment as he is not involved in my clinical trial. Any suggestions on what doctor I should see about this? It’s quite painful and debilitating. Thanks.Reply
I am sorry to learn of your radiation fibrosis. A couple of things. I below to a closed Facebook group for RILP people. Lots of knowledgable people on the list who have experiences with raditation fibrosis. Further, don’t expect your oncologist to know much about this long term side effect. Lastly, if you underwent radiation treatment relatively recently, I recommend hyperbaric oxygen therapy. This is the only treatment that I know of that may be curative. I will link the FB group below.
Let me know if you have any questions.
I had radiation treatment for Hodgkin’s Lymphoma in 1993. Since then I have been in severe pain that is only getting worse. The pain is in my upper back/shoulder area and radiates down my left arm. I also have dysphagia, neuropathy, myoclonus, muscle spams and lung scarring. I attribute all of these things to radiation damage and now suffering from Radiation Fibrosis Syndrome. I am looking for any guidance to deal with this as it is very unknown and misunderstood and I am tired of being in constant pain. I am also looking for a doctor in the Chicago land area that is familiar with RFS. help!Reply
I am sorry to read of your constant pain and health problems caused by your radiation therapy. While my experience is a bit different from your, the result is the same. The therapies that I undergo in hopes of helping my radiation damage are deep tissue massage, anti-inflammatory supplements, whole body hyperthermia and frequent, moderate exercise/stretching, etc.
I’m sure you do most or all of the above. I belong to a radiation-induced lumbo-plexopathy FB group and most if not all the members have the same long-term and late stage side effects from radiation that we do.
Let me know if you have any further questions. I’m sorry I can’t offer more help.
Hi, Look for a Survivors Clinic. Some one there should be aware of the issues. In the meantime, google Sloan Kettering – Dr Stubblefield – Radiation Fibrosis Syndrome. There are you Tube videos about it. Also, Stubblefield is part of a group called ‘ReVital’ that seems to be going around to educate other medical professionals about the effects of radiation and chemotherapy. Dr. S is now at the Kessler Institute in New Jersey….Worth the visit.Reply
In 1986 I had radiation for Hodgkin’s Lymphoma. I had more radiation that was usually given at the time, do to a reflux problem discovered during treatment. I have had my thyroid removed (90’s), triple heart by pass surgery (2007), and just finished treatment for a secondary cancer (nonhodgkin’s lymphoma). I have neuropathy in my face, can’t taste sugar or salt, migraines, and dropped head syndrome. Recently I have had episodes where I can’t breath for a minute or so. It has happened when I was drinking water with my head tilted back. It doesn’t happen every time I drink this way. I have looked the symptoms up on line and it looks exactly like Laryngospasm, but the voice therapist says it is not, because it has only happened 5 times in 2 years. Can radiation fibrosis effect your voice box?Reply
You are asking a great question. Keep in mind however that I am not any sort of medical professional and I can’t begin to assimilate all of your health issues in order to answer your question.
Having said that I believe that yes, radiation fibrosis can effect the voice box. I say that with confidence mainly because my own radiation fibrosis causes ongoing problems with my own vocal cords and I believe my voice is deteriorating.
I can’t do more than give you my own experience. I hope that helps.
Hi, I had Radiation for Hodgkins in 1974. Similar issues…thyroid, Open Heart Surgery, paralyzed diaphragm…and recently diagnosed Radiation Fibrosis Syndrome in the Neck and Shoulders (tight choking feeling) and, Atrophied Vocal Cord. Otolaryngologist recommended Neck Therapy which has provided huge relief. It was mostly myofascial release massage combined with exercises.Reply
HI , i had radiation treatment for tongue cancer march 2016, including radiation to neck area and lower face. also had 23 lymph nodes removed from neck. 6 weeks radiation and now horrified to read about radiation fibrosis syndrome. is there anything that i can do to prevent getting this. i am freaking out about it all. as if radiation wasn’t enough with no saliva, ulcers , thrush, tooth problems etc etc. i did a bit of physio post surgery and try to keep active. thank you. from dunedin nzReply
While I understand your initial desire to freak out, you will be happier and healthier in the long run if you try to learn about possible therapies and set about undergoing each one day at a time.
The research is hazy about actually healing radiation fibrosis but I will link therapies below.
1) HBOT- this is probably your best hope for healing radiation damage to your body– HBOT click now-
2) Re radiation to your neck- I too had radiant to my neck and began to notice difficulty swallowing. This is called dysphagia-
I now do head raises- sort of “sit-ups” for my neck- To strengthen my neck and ability to swallow. I encourage you to add this exercise to your daily routine.
3) Saliva- I too had dry mouth- I underwent acupuncture to fix this side effect.
If you would like to talk more I am a cancer survivor and cancer coach. Let me know if you have any questions.
FYI- Side note- I have a great family friend who lives in New Zealand. Christ Church I think? Wonderful country.
I am struggling with radiation induced fibrosis after treatment for breast cancer. Looking for support and resources.Reply
I am sorry to read of your struggles with RF. Keep in mind that there can be short, long-term and late stage RF side effects. For example, a short-term side effect might be your skin. But this problem should heal. I will link Dermatitis
Further, hyperbaric oxygen therapy has been documented to heal radiation damage. Your doctor must prescribe this therapy in order for your insurance to pay.
When you say “stuggling” do you also mean nerve damage and heart damage? There are supplements cited to help this damage though studies will advise supplementation before radiation not after. Let me know.
Let me know if you have any other questions, comments.
Hang in there,
It’s interesting that you say that.I belong to a Facebook group for radiation fibrosis people. We are all over the place in terms of how bad we are, when the damage occurred, everything. Let me know if you would like to joing the radiation-induced lumbo-sacral plexopathy Facebook group.
My name is David Emerson. I wrote the blog post that you and Sue McDonnell both replied to. Sue’s reply was written more than two years ago. I do not know if she will reply to your question. I do not know how extensive your RF is but I recommend that you try hyperbaric oxygen therapy in an attempt to heal your RF.
Hang in there,
What about stem cell help with RFS in the neck from radiation (HL survivor)?Reply
I don’t know the acronym RFS. I know a bit about “stem cell help” as I have read about it for heart damage. I live with chronic atrial fibrillation from various chemotherapy regimens. As for stem cell therapies for RILP or nerve damage either from radiation therapy or chemotherapy I understand the main problem to be scar tissue. In other words, radiation causes scarring. It is the scarring that then blocks the nerve conduction.
Therefore I don’t believe that stem cells prevent or eliminate fibrin from scarring.
This is my layman’s understanding anyway.
Just wonder in you ever had the stem cell therapy for RFS? I am a HL survivor and had radiation in 1993. I have been in chronic pain for years, that has gotten worse lately. I also have muscle spams, lung scarring, myoclonus, dysphagia and neuropathy but the pain in my shoulder, neck and upper back area is the worst symptom. I am scheduled for stem cell therapy in two days!Reply
Hi Jennifer Curtis. I wonder did you have the stem cell therapy and did it help for any of your symptoms, especially the shoulder, neck and upper back area pain. I’m a HD survivor of 36 years, treated with Mantle Radiotherapy and have had problems with similar musculoskeletal symptoms for the past 8 years.Reply
Or does anyone else know anything about stem cell treatments for muscular atrophy secondary to radiation therapy? My understanding is that the main problem here is the death of muscle cells, not really the fibrosis or the damage to nerves. Stem cell therapy may allow new muscle cells to be produced. And David Emerson , what did you find out about stem cell therapy for heart muscle damage? If it works for that it might very well work for skeletal muscle damage.Reply
The info about stem cell therapy for heart muscle damage is sparse if at all. I will keep looking though. I know little about radiation causing muscle damage.
Yes, I did have the stem cell therapy for my RFS, and unfortunately after spending thousands of dollars, it did not work for me. However, I did have the stem cells injected intravenously. I wonder if I had them injected directly injected into my main source of pain site, if I would of had a different outcome. Lately for the pain, I have been practicing yoga and meditation. It definitely helps me deal with the pain.
Hope this was helpful. Best of luck to you!Reply
Thank you for your input. Sorry the stem cell therapy did not work but good to read that yoga and meditation are helping.
I wish I knew what I know now before I had radiation … I was so naive… I did not have to have chemo so Inthought Inwas having the easier option.. Little did I know that years later I would pay a high price for this treatment…Reply
[…] Multiple Myeloma Radiation Side Effect […]Reply