![]() Hi All, I had Novalis Radiosurgery on my pit tumor yesterday, 1/28/04 in Reno, NV at Washoe Medical Center. Here is my story. I was diagnosed with hi prolactin due to a pit tumor at age 38. Was a full time self-supporting college student at that time. Was diagnosed by a gynecoligist (and real human being ) who started me on Parlodel. Took this drug for about 2 months with horrible side effects, then quit as couldn't afford it (about $200.00 a month, too much for me as a college student with inadeaqute health ins.) Graduated in '97 and moved back to Reno. After being in Reno for awhile started seeing a gyno but told her I did not want to take Parlodel again because of the side effects (dizzieness, really bad ittitability and nausea) She started giving me estorgen and progesteron. After awhile, maybe about six months, started going to a differnet doc, a GP. SHe was great and we just monitored my prl level which was about 350. When it go to 608 she reffered me to a endocrinoligst. This endo has been good to me. I told her of my negative eperience with Parlodel and she Rx'd Dostinex. Took this for awhile but the dosage kept going up until I was no longer, even with health ins able to afford it, so switched to bromocriptine (now available as a generic) The endo had me take the med in an incremental way at night which did help with side effects, until I was at 15mg a day (that is six 2.5mg pills a day) this was too much, the side effects became intolerable. (lethargic, weight gain, mailise, just didn't feel right) my PRL went down to 30 but I had turned into a slug with no life. Reduced med by one pill to 12.5mg, which gave me lots more engery and was able to function better. PRL went up to 50. Now, while all this was happening, the bromo also caused to me have emotional side effects. The bromo calmed my anxienty, hostility and irritablity, but caused me to have mood swings, crying jags, obssession thinking and I was generally a mess. I felt like a slow motion emotinal train wreck that would never end. I had seen a neurosurgen several times to discuss transsphenoidal surgery. I decided in late Oct to go see her again. We decided to take me off the bromo for 30 days then have another MRI. The reason is, my tumor was just not showing up on recent MRI's, so the thought was that to go off the meds to see if it would affect tumor growth and vibility. Doc also looked again at previous scans, the one from 2001 being the last one where the tumor was most visible. The MRI showed two things, I now have partial empty sella and the tumor had invaded the sinus cavity, and in spite of treament with Dostinex and bromo, had grown larger. What doc explained to me is, PRL tumors grow on the edges (thing left and right) of the pit gland, and can move through the tissue seperating the pit from other areas. Once the tumor was in the sinus it became difficult to see. She reccomned Radiosurgery, as she said the tumor being in the sinus cavity is inoperable. and in Reno we have a Novails machine. This machine provides sterotacit radiosurgery, or fractionaited radiotherapy. This is supposed to be the most advanced radiation sugrery available today. One of the nurses told me that there are 22 of these machines in the US. What this machine can do is shape the beam to the dimensions of the tumor. For some info about this machine, here is the URL to the UCLA medical center which has this machine, (and trained my doc) check it out! http://www.radonc.ucla.edu/index.htm Doc also told me that treatment results (reduction of PRL and tumor) would be slow, possible up to two years. The major possible side effect was hypopituitarism. So, before I agreed to this, I spent some time at medline http://www.ncbi.nlm.nih.gov/PubMed looking at studies. Could not find out too much about Novalis, until I changed my search to include the accronym LINAC. (though now I don't remember what LINAC means (darn memory deficts!!:-( What results were there were encoraging, and also, the rates of hypopit in what I saw seemed to be running about 30% (by my fuzzy math :) I felt that these were my options: live with the bromo which I don't want because the emotinal side effects had become intolrable, have the surgery to see if I could either not have to take bromo any more, or if to take it, hopefully require a smaller dose that I could tolerate. But what about hypo pit. Well, the new info of partial empty sella with pit tumor in sinus, I felt that hypopit was a risk whether I had surgery or not. To my advantage, I felt that with surgery I would be under better surveilence and hopefully catch hypopit in the beginning stages if it occurs. I decdied to have the surgery. Off I went to a radiology onnocoligst, who talked to me about the surgery, what the side effects could be and ordered me to have a "Novalis protocol" MRI. How the surgery works is this way: it's outpatient, you go in in the AM, the doc fits you with a metal frame on your head. The frame is pinned into your scalp-four pins, two on the front side and to on the back sides. The doc numbs the scalp with an injection, and then the pins go into the scalp to press against the scull. With the pins in, I did feel pressure on the scull. This holds the frame very tightly to your head. Then the nurses put this big clear "bubble helment" over my head, this had specail holes in it, and took measurements, then took the bubble helmet off. This way, when it came time for the treatment, they would measure again to be sure the the frame hadn't moved. Then, I had a cat scan. Then waited about 2 hours while my doc, the onnocoligst mentioned above and phyisict planned out where they wanted the beam to go. The actuall treatment was the easyist part. They took to the treatment room, positioned me on the table, then latched the frame to the table, very important that the head does not move at all, thats why you have the frame. The Novalis machine is a big C shaped machine that moves around you. It made 5 passes on me and only seemed to take about 15 minutes. I was home a couple of hours later. Had a pretty good headache and felt kinda "ucky" for lack of a better term. Felt ucky because in the AM before I had the frame attached, I was given a shot of a steriod (sorry, don't remember the name of it) and it was this drug that I feel made feel ucky. The worst part of the day was having the frame applied then having to wear it for about 3 hours. I ate well last night and feel just fine today. After the procedure my two docs, the neurosurgen and the onnocoligst and I discussed follow up and treatment plan. I have elected to not go back on bromo as I feel we can better monitor my PRL levels this way. I did have my PRL levels checked Monday for a benchmark. So, time will tell. Best,
Maureen Reno, NV |
