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Patients Against Lymphoma

 

Support > Patient-to-Patient > Patient Experiences & Guidance

Connie's Story

Since some of you have asked here is my diagnosis and treatment. Understand that my treatment was a bit more radical due to my being diabetic.

5/98 diagnosed with some benign tumor in right parotid gland, it would have increased in size so it had to be removed.

When the ENT got in there he new the biopsy was wrong so sent slides to 3 different labs (god love the man). My parotid had been destroyed by infection so he had to remove it. lab came back with MALT. I had radiation (200 for 20 days). I reacted severely to the treatment, I had to stop in the middle to let my face heal because it had broken open and was reaching a critical burn level.

In 12/99 diagnosed with MALT in the left parotid gland. Again the gland had been destroyed by infection and the tumor had spidered out to the center of my cheek. Removed the gland and tumor. Because of my history with radiation, my new Radiation Onc. suggested we use Amifostine (sp) a drug that protects healthy tissue from radiation for about 45 minutes after being administered. (I understand it has been used in chemo as well). It was developed by the military to protect soldiers from radiation, that is a
whole other sad story.

Had a picc line put in and started the exact same treatment but on the left side. It went much better, I still got severely burned but was able to make it through the treatment without a break. I healed in about half the time. The drug is not for everyone, because it does cause nausea. But for me it was very helpful. It also has an accumulative affect, this was the first time my doctor had used it, and I think it was fairly new at the time so he didn't know it would do that. the last week it became quite a routine, get the Amifostine through the picc line, vomit, get radiation, vomit, go home and sleep. even Zofran didn't help after awhile. However I did manage to save some of the secondary glands on the left side so I didn't dry out like I had before. Finished second treatment 3/17/2000 then 10 days later turned 40. Been great tests and checkups since.

So that is my story, and I know it will continue to have a happy ending.

Connie

 
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