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Healing Radiation-Fibrosis- Xerostomia aka Dry Mouth

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I underwent local radiation to my newly resected fifth cervical vertebra in February of 1994. I was told I had a single bone plasmacytoma (pre-MM) in my C5 that had to be removed. I underwent local radiation to the area following the surgical procedure.

During the years following the local radiation therapy I developed a long-term side effect called xerostomia.In effect, my local radiation damaged my salivary glands’ ability to produce saliva. I learned the hard way just how useful, how important saliva is to us.

Benefit of this therapy? 

I developed full multiple myeloma less than a year after this local radiation to my neck. I don’t see how the local radiation could have been any benefit to me. Therefore, I had to figure out how to manage the negative effects of xerostomia. I had to manage the enamel erosion from my teeth, the receding gums, and much more.

The 4 blog posts linked below document this side effect, my therapies, coping mechanisms, etc for my dry mouth.

Like all my other long-term and late stage side effects,

  • I was not told about the likelihood of this side effect during my therapy
  • I had to figure out the side effect, the seriousness and possible therapies
  • I wrote about the experience in PeopleBeatingCancer.org over the months and years following treatment

Alternatives to local radiation therapy?

Though I developed full-blown MM less than a year after my local radiation, I do believe that this therapy- local radiation- can be an effective therapy for patients’ with a SBP. I believe I was mis-diagnosed with pre-mm when I already had full MM.

I have worked with many patients who have also been diagnosed with a single-bone plasmacytoma (SBP) and many people live with this pre-myeloma diagnosis for years.

Therapies to heal radiation fibrosis?

Both resveratrol and acupuncture have been shown to reduce the damage done by radiation (resveratrol) and heal radiation damage. I do neck sit-ups (shaker exercise) every morning for my dysphagia. (dysphgagia is closely related to xerostomia in my case)

I get bored if I just hold my head off the floor. So I do sit-ups, front, side, on my stomach, yada yada…

I do all three therapies regularly and have for years now. The only addendum I would add is to begin this therapy ASAP following local radiation to your head and neck area. I would also consider hyperbaric oxygen therapy immediately following radiation therapy.

In short, this post and links to my blog posts documenting this side effect is designed to address my mantra of  “I wish I knew then what I know now-

Scroll down the page, post a question or a comment and I will reply to you ASAP.

Thanks and hang in there-

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Acupuncture Relieves Dry Mouth from Radiation in Head/Neck Cancer

Patients who have received radiation for head/neck cancer often suffer from the unpleasant and distressing side-effect of a dry mouth, caused by damage to their salivary glands from the radiation…

Skip ahead to today- 6/27/13. My gums have receded and the enamel on my teeth is slowly eroding. Dry mouth is sneaky. I wish I knew then what I know now. I read the study below about acupuncture healing dry mouth about five years after I had begun struggling with dry mouth. I found an acupuncturist in my town and underwent this therapy for about six months. Long-story short,  my dry mouth is much improved…

Multiple Myeloma Side Effect- Xerostomia aka Dry Mouth Therapy

Xerostomia can lead to speech and eating difficulties, halitosis (bad breath), an increase in the number of dental cavities (saliva helps prevent tooth decay), and infections in the mouth, such as thrush…”

At the time I had no idea that the radiation would damage my salivary glands  causing a long-term multiple myeloma side effect that I would spend the next 25 plus years struggling with dry mouth..

For the record, my case is manageable. I have read about cases that are much more serious than mine. Serious radiation-induced dry mouth can cause your gums to recede and your teeth to fall out.

According to the article linked and excerpted below, dry mouth is a common side effect of many medicines…

Dry mouth treatment: Tips for controlling dry mouth

“To relieve your dry mouth…

Multiple Myeloma Side Effects- Radiation Fibrosis Syndrome- Therapies

Radiation fibrosis syndrome describes the myriad clinical manifestations of progressive fibrotic tissue sclerosis resulting from radiation treatment…

“I then underwent 6 weeks of radiation and now I am horrified to read about radiation fibrosis syndromeIs there anything that I can do to prevent getting this horrible long-term side effect? I am freaking out about it all. As if radiation wasn’t enough with no saliva, ulcers, thrush, tooth problems etc…”

The research is hazy about actually healing radiation fibrosis but I will link therapies below. These are therapies that I do and that have helped me with my own radiation-fibrosis syndrome.

1) Hyperbaric Oxygen Therapy (HBOT)  this is probably your best hope for healing radiation damage to your body–

2) Re radiation to your neck- I too had radiation to my neck and began to notice difficulty swallowing. This is called dysphagia-

3) The Shaker Exercise-  I encourage you to add this exercise to your daily routine. I could do only about 20 neck sit-ups when I first started. Now I can do sit-ups at various angles, and complete more than 100 each angle, each session.

4) Saliva- I too had dry mouth caused by radiation. This side effect is called xerostomia. I read this article about acupuncture to heal xerostomia and I found an acupuncturist. My dry mouth improved measurably after about six weeks of therapy…”

Multiple Myeloma Side Effects- Fibrosis- Pentoxifylline (Trental), Vitamin E

Pentoxifylline and vitamin E for treatment or prevention of radiation-induced fibrosis in patients with breast cancer.

“Radiation therapy (RT) plays an important role in the management of breast cancer. Radiation-induced fibrosis is a side effect of radiation therapy and may occur in up to 13% of the cases in patients (Radiother Oncol, 2009;90:80), fortunately usually is modest/localized and not associated with marked symptoms.

However, occasionally, fibrosis can be moderate-to-severe, and cause clinically-meaningful symptoms. The current review summarizes the use of pentoxifylline and vitamin E of treatment or prevention of radiation-induced fibrosis in breast cancer patients. Even though data are limited, this regimen may reduce RT-associated toxicity…”

 

 

 

 

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