(Web) Extra: Read All About Proton Beam Therapy
Reader Comments
My Favourite Website
Great site, how do I subscribe?
You do not provide the 6 accounts you say you do
In your April 18, 2008 discussion of proton beam therapy, you say you excerpt and respond to 6 accounts, but there is only one (Eric of Washington State). Where are the others?
I am especially interested any any NEGATIVE accounts of proton beam therapy for prostate cancer (or even just generally) and of Loma Linda especially also. There are a few in the reader's comments, but generally it is very hard to find negative accounts or accounts of side effects, because there is so much positive press and comments about Loma Linda and proton beam. Fine if true, but no therapy is perfect, and I suspect there is another side to this if being fully truthful. Especially with the few, very disturbing, comments that suggest Loma Linda suppresses or ignores/doesn't respond to complaints or cases gone awry, it is even more important to have full disclosure and investigation and have the whole story. I am favorably impressed by the Loma Linda and proton beam accounts, to the point of considering subsituting that for surgery for my fairly early (Gleason 6 and 7 - right and left sides) prostate cancer, but I want to be rigorously sure of having the full story - all aspects pro and con - and as soon as possible. Thank you,
Philip
i am wondering was my husbands treatment wrong
my husband had prostate cancer and he had sergery at the va hospital in philadelphia, which a metal rod was placed in his penis and he then went for radiation for six weeks he had side efects
he leaked urine from his badder, i felt somethang was wrong but of couse he never spoke about any of his treatment so i am wondering was his treatment handled wrong all this time took place when we lived in pilly at that time
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Mass General Proton Therapy
I just had a single dose of Proton Therapy for treating a pituitary tumor. I had a transphenoidal surgery 4 years back but given the growth rate of my recurrent tumor I was advised that the proton therapy was the best course.
After getting second opinions from doctors at Pittsburg who were recomending a second surgery and perhaps using the Gamma Knife and based on the opinion of my neurosurgeon at MGH whom I fully trust I decided to embark on the Proton Beam Therapy at MGH.
Last week I went in for putting in skull markers which are small sized BB's. This procedure was done in 30 minutes using local anasthesia. I experienced some soreness for two days following this treatment with the occasional headache. The real issue here was more the anticipation than the pain. During this session a skull mold was prepared along and a CT scan was also done with the skull markers. All of this was very professional with me the patient being well informed of the steps.
Today I was strapped onto the table and the entire procedure took around 1 hour with 4 angles of radiation. The total radiation time was around 5 minutes with the bulk of the time being spent in the preparation. The doctor walked me through the isoplanes of radiation and the levels on the lobes of the brain varying from 1800 cGy to 200 Cgy. An hour after the radiation my head did feel heavy like one feels from a stuffy cold. After taking a Tylenol this subsided and I feel normal. Its still early and I will be monitored every 6 months.
Loma Linda's proton beam treatment, prostate CA
Loma Linda's refusal to deal with the problems they create with their "marvelous" treatment beam therapy should be publicized widely. This lack of medical accountability speaks to arrogance and coverup.
Loma Linda Hospital should be ashamed and should not abandon those patients who have side effects of any kind.
One might appeal to their probably Republican values of ACCOUNTABILITY!
Loma Linda is not the only doctor or hospital to run from responsibility. It is an epidemic in USA. Medicine is full of compassion until you really need it.
As a nurse practitioner, I see it frequently and cringe for the patient who is abandoned by trusted doctors/surgeons.
Hannah Frank, APN for 30 years
Proton beam radiation after second atypical meningioma tumor surgeries
Eugen Hug, MD convinced me to have brain tumor bed radiation at Loma Linda. I started my radiation three weeks ago. I also gave stage 3 kidney failure. My treating physician at Loma Linda knows all my medical hystory. In March, 2008, my Doctor at Loma Linda created for me a fixed head piece by using only a contrast free MRI and CT scan. I waited over two months before they called me in for treatment, despite I called them every week. later I find out that the problem was that I sent to my Doctor's nurse an article by the world's formost radiologist, Dr. Eric Hall, who wrote an article that ONLY THE SCHERER INSTITUTE in Switzerland has so far the so called SPOT SCANNING system that has 10 time less radiation over all the old fashioned US systems. The FDA has approved the new Swiss system to be built in the US in the next few years. Loma LInda got offended. I called Dr. Eugen Hug in Switzerland who admitted the scattering Loma Linda radiation, but because I am 69 years old, so what? I am OLD! To me it does not metter. Now, I am experiencing baldness, pain, teribble leg pain to opposite side of my radiation to my brain. I spent six hours at the Loma Linda emergency room with my terrible leg pain, up to my hip. I got three different opinions from three different doctors. A few days before I started my radiation, I gave my Doctor a recent FDA approved list of five new MRI contrasts that can be used for patients with kidney failure. My doctor promised me that she will have now a contrast MRI, so she can re-design an up to date radiation path, because the radiation I am getting is based on an approximate contrast-free MRI, that was made in Marc, four months ago. Despite they had the FDA approved new contrasts for MRI's, the injected me with the recalled Gladolonium, that can not be given to patients with kidney failure. The Gladolonium contrast they gave me can cause Nephrogenic Systemic Fibrosis. Otherwise, it can destroy your kidneys, you must go on dyalisis, you can experience bone, joint and muscle pain, and just waist away. My orthopedic doctor told me that the leg/hip pain is not from my back. I am also experiencing a considerable eye pain and burning at the radiation side. Thank you for patience reading this.
proton treatment
I "did" my treatment in Boston, at Mass. General Hospital 2 years ago.
My treatment was for a Chordoma brain tumor.
After 5 surgery's over a 15 year span, I was told that surgery was not an
option anymore, Proton was my last chance for treatment.
For 9 weeks I had daily treatments, lasting about 30 minutes.
It just pulled all the energy out of me.
I did not feel tired, I just had nothing left!
I have returned to full-time work, and I am doing o.k.
My sex drive however has disappeared, and I am still trying
to find a solution.
At the present I am taking steriods as perscribed , and I see
a slight improvement.
