Multiple Myeloma Radiation Side Effect

Hi Richard,

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.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5856981/

Thanks again,

David Emerson

Hi Frank,

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,

David Emerson

Hyperbaric oxygen therapy for the treatment of the late effects of radiotherapy

https://www.cochrane.org/CD005005/GYNAECA_hyperbaric-oxygen-therapy-treatment-late-effects-radiotherapy

“The issue
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.”

Hi Bob,

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.

Thanks

David Emerson

Hi Lori,

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,

David Emerson

Hi Beatiz-

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?

David Emerson

Hi Kris-

One of several therapies is discussed in the blog post that is “recommended reading.” HBOT-

David Emerson

Hi Jasmina-

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,

David Emerson

Hi Deana,

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.

https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/

Let me know if you have any questions.

David Emerson

Hi Jennifer-

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.

David Emerson

Hi Anna-

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.

Thanks

David Emerson

Hi Sue-

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.

David Emerson

Hi Joanne-

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.

thanks

David Emerson