I'm homebound today due to icing conditions on the roads (rare for down here!). I thought I'd spend some time this afternoon cutting and pasting from some of your posts while you were getting your radiation treatments. In the absence of full and accurate doctor records, I hope this will be helpful to you and your attorneys in the fight ahead - jog your memory about things to ask and issues to raise.
October 5, 2009: "With the suprapubic catheter in place, there was no drinking or trying to hold in vast quanities of water ahead of time, that is a blessing in itself. They were able to work around my new catheter without any problems, and were quite careful not to hurt me where it exits my body, as it is still very sore 4 days after surgery.... I talked to my radiation oncologist when finished. She said she did increase the length of the treatments and the total greys higher, about to the point of a primary treatment. She determined that the PC in me was very agressive right from the start, both pre-surgery and post surgery, and that anything less than this dosage might prove to be entirely ineffective. I have to trust her judgement on that point. You only get once chance with this salvage treatment, so I guess the more the merrier."
October 8, 2009: "When I asked my current radiation oncologist about why she increased the number of treatments from 35 to 39 and the greys to 72, her answer pretty well echoed that thought without her actually saying it. She did indicate that my pre-surgery and post-surgery psa velocity were something to be deeply concerned about.... Was reading an article about radiation sickness, that even at 1 - 2 greys daily, a person can get nausea and vomiting, so I am in the range for the nausea attacks I have been feeling this week. The one tech on the machine said there was no way I could be feeling nausea. Told her there was no reason I would be lying, as I rarely if ever experience nausea normally. Should have printed off the article and had her read it tommorow."
October 9, 2009: "For the record, have felt nausea on all 5 days. Not severe, but reminds me of the miserable feelings I felt 10 years ago getting radiation."
October 12, 2009: "Today began 2nd week of my 8 weeks of salvage radiation treatment. Zap #6 went a bit smoother, one new operator, and not all the alignment problems like last week. But then there was only one other person in the waiting room this time. Met with my Radiation Oncologist today, and discussed all my current concerns with her. When I feel I need it, she will give me a script for some anti nausea med. Told her it is mild now, rather wait until it really gets bad.... She did say that the 72 grys of projected radiation is a whole lot considering its being concentrated in a very narrow area, but she said with my psa velocity issues, both pre and post surgery, its my best shot to nip what is left in the bud. So she said the side effects will be tough because its not being spread out.... It really helps when you trust your medical team. I am fortunate, as I have a great long term GP, great uro/surgeon, and now a great and compasionate radiation oncologist."
October 14, 2009: "Today was number 8 of 39. Lots of alignment problems, sure makes me nervous, hoping they really have it right when I get zapped."
October 16, 2009: "Today completed my 2nd full week of SRT. Hardly anyone there today, so I was in and out in about 30 minutes, they had different operators this time, and they didn't have all the alignment problems that went on all week."
October 19, 2009: "Today was #11, it was delayed for 2 hours because of an "emergency", though no one would ever say what it was. I was already sore from the stopped up catheter episode this morning (see thread below) and it took 55 minutes to get the treatment done with the radiation. It was the original crew that seems to endless trouble with alignments. Twice, they said good to go, and position the machine to do the first zap, and they had to abort and bring the machine back to the top. No explanations are ever giving, in the position I am in, I can hear them talking barely, but they are out of my line of sight being on my back.
Was going to gripe to the Radiaiton Oncologist, my day to see her, but by the time that got screwing around with the treatment ,the doctor had left the building with a message that I could talk to her after Wednesday's treatment."
October 21, 2009: "I asked if there was anything in particular she monitors once a treatment has began ,and she not really, and even if she did, she said it wouldn't change the plan or the schedule."
October 22, 2009: "Actually she said with IMRT, the alignments are so very critical, despite having the tattoos and the little adhisive dots they put all over you each time. She said as I suspected, as a safety precaution, the machine won't fire radiation unless a great number of parameters that are in patient's program specific to them. Since the machine is used all day on a number of patients and procedures, she said it can take time, but its to assure that I get exactly the gys where and how she wants them distributed. Sounded like a reasonable answer to me, but hey, what would I know? lol. They are the experts. I know from talking to the techs, they have physical alignments, mutiple laser alignments, I see the red lines all over the place in the treatment room, and they even use GPS on some of the fixed points. Quite a machine, that part impresses me."
October 23, 2009: "I am a homebody by nature, unless it was a life or death situation, I would not be interested in going far off for treatment and staying in a hotel for weeks. But thats just me....
Made another Friday, 3 weeks down out of 8, still a ways to go. Lot of pain around the SP tube when they zapped me today. After, they inspected my lower navel area, and admitted what I had been saying for days, that I am getting radiation burns on the skin already. So much for the "there's no way you can be getting that so soon" attitutude I heard a week ago. They are going to have the radiation dr. look at it Monday when I meet with her.... Part of the reason she switched her plan for me to IMRT was to lessen the side effects, and know what a troublesome bladder neck connection I have. She was the one to push for the SP cath for the same reason."
October 26, 2009: "Today's treatment was annoying, no one's fault I guess, was laid on my back for 50 full minutes why they had the usual alignment battle. By the time they were done, had to be helped into the sitting position and my back was throbbing. Since treatment 14, every one now makes the exit of my SP catheter hurt and burn. I hate the thought of going through that 23 more times. Still get nausea, but its not strong, doesnt last long. Have lost 7 lbs in the first 3 weeks of treatment, so it is having some effect on my eating. Saw the Rad Oncologist today, but I really didnt have much to ask this time, was too sore. She said I was doing fine, but to expect the fatigue wall to keep increasing."
October 27, 2009: "Was in and out in 35 minutes. But when the zaps were over, took both of the operators to help me up, because of the burning pain where the SP cath exits my body. This problem is getting worse, they are going to talk to my dr. When I talked to her yesterday, she seemed clueless about why I would feel anything at all, and said to mention it to my Uro. When I mentioned it to him a week or so ago, he blamed it on the radiation and what he called "scattering". All I know its hurts when the treatment session ends, and it can hurt for hours after. Also, and I had mentioned this to the dr too, been getting a lot of penile pain in the hours after being zapped, almost like if my "friend" were bruised, but obviously not a mark on me. No explanation was giving to me for that either. The main operator still stressed that in 8 years, they had never treated anyone with a catheter in place, let alone a SP cath. Hope its not causing or will be causing a problem.
Pain or no pain, I am totally convinced that without the cath, I would be in a total retention situation already, so I am not second guessing the push to have the SP installed."
October 28 2009: "The IMRT machine indexes and zaps 7 times with me as it circles my body. Interestingly, position 6 shoots right where my SP cath exits below my navel. Immediately it started hurting there as soon as the zap in that position ended. Again, a burning, searing pain right at the spot where the cath tube comes out. Not my imagination like one of the operators insinuated. Will bring it up again to the Rad. Oncl. next Monday when I meet her."
October 29, 2009: "At position six, once again, felt a mild burning pain at the SP exit, and told the operators that I wanted a full answer and that I would be reporting it to the dr, again, on Monday. I asked if it were possible if it was like some kind of weird microwave effect, heating up the tube in my. THey said no, unless there was some metal in it, which there isn't. So once again, left sore at that spot and had to be helped up again. My only fear is that something may get damaged out of this deal."
October 30, 2009: "Same as before, when the machine zaps in the 6th pos, immediately felt heat and pain at the SP exit. Also in the 4th position, which is right directly over me, the last two days zap has produced penis pain at that point. Again, my operators claim innocence and act as if it were my imagination. Going to get my URO to speak to the Rad Oncolog after I meet with both of them Monday. I just want to make sure I am safe. If it is a question of sensitivity and pain, I can deal with that for 4 more weeks, just want to be positive that I am not in any danger. One of those times you have to be pro-active."
November 2, 2009: "Did get to have my weekly meeting with my rad. oncologisit. She finally admits (after a month) that some of the pain I have described in my penile shaft, testicles, and lower bladder region are related to the radiation. Duh, told them that after the 1st week. She also thinks the big increase in bleeding over the weekend in my cath bag is probably radiation related. She's concerned about the uro wanting to do a hard dialation of my bladder neck today, concerned it might even make things worse from her side since she is treating that area as well. I told her, before someone ends up putting me into more un needed pain and trauma, why don't you call him up on the phone before I go there this afternoon, and decide if it is really needed today, and is it worth the risk, if any? You wouldn't think I would have to suggest that. Told her that her tech crews are pretty decent, but instead of questioning the validity of a patient's pain reports, just to simply report to her directly what the patients are saying. Told her I have no motivation or reason to make up stories of things hurting for the fun of it. She agreed."
November 6, 2009: "The most experienced operator is being moved to another location, so there will be someone new on the team for the remaining 3 weeks. Not sure how I feel about that."
November 9, 2009: "Talked to my radiation oncologist, she was thrilled that the uro didnt dialate me last week, she felt it would have been a big mistake."
November 10, 2009: "Everyone knows that RT in any form plays havoc on one's immune system, that's a given. The catheter part is a bit unusual, but the alternative is to be blocked up again, involving emergency procedures in the middle of radiation, not a good combination.... I am very compliant with my medical team, and I communicate openly and at depth with all the players. We talk in great detail about a lot of issues."
November 11, 2009: "After giving me a day yesterday of lesser pains and discomforts, the pain gods struck me with vengence today. Been a day of extreme soreness, tiredness (despite sleeping fine last night), many bloody catheter bags, and several dozen spasms. The treatment was about a 30 minute affair today, but it took both women to help this old man back upright, it was so sore at the SP catheter site."
November 12, 2009: "Yes, I am nearing the end, but it will still be a long 10 treatments in my book. When I left there, took both women to help me up again, felt kind of stunned and dazed to be honest. Searing pain in my penis and rectum, entire abdomen was sore and swollen feeling, very sensitive to the touch, and of course ,the SP catheter tube exit felt like it was on fire. By the time I changed back into my street clothes and started walking away, was so nasueated that for the first time, thought I was going to hurl."
November 13, 2009: "Trust me, I am not afraid of vitamins nor trying to prove some Martyr's path here, but my own radiation oncologist is so adamant against vitamins in general and the D-3 in particular, what should I think as her patient? And when her view echos my long term GP on the same subject, pretty convincing to me that they aren't going to help me if I took them. All in all, I believe in being a compliant patient, unless there is something really, really, obviously wrong with the picture."
November 17, 2009: "Today the pain gods were fairly decent until about an hour before I went to the clinic. This session drug on for about 35 minutes. And boy, when that 7th position was done, I felt a strong searing burning right at the exit of the SP catheter. Not a mild hurt, felt like someone stuck a hot nail the size of pencil where it comes out. Took both operators to help me back up on my feet. They had the nurse look at it, but of course, there is nothing to be seen on the outside. I am sure that it is just the aftermath of another good dose of radiation in a sensitive area."
November 18, 2009: "Todays was a 45 minute affair. Back to alignment issues. I went in very sore from the burning at my SP exit hole from yesterday, so I didn't expect todays to be easy. And it wasn't. If you like my fractions, today made 11/13th completion, 6 more to go. Met with my rad. onclogist today. She is already planning my post radiation time. She is reccomending to leave the SP catheter in place until early January. She said that even when the radiation stops the end of next week, it will continue to burn and cause swelling for 3 to 5 weeks after. She will talk to my urologist and suggest that he waits for any attempt at dialtion of my bladder neck till mabe mid-January.... She examined me closely, and still puzzled why I have so much burning pain with both my penis and the SP catheter site. She thinks it isnt the result of "scattering" but the result of hyper-sensitivity to radiation. She said she has some patients that have to abort radiation because of side effects, but they are the rare ones."
November 20, 2009: "Today's session was a 35 minute one. When they pulled the little self-adhesive sticker things off of me (used on top of the tattoos for alignment) they burned and hurt, my skin was that tender to the touch. And the usual burning pain at the SP exit. Had trouble walking without pain while I was dressing, and then had a huge painful spasm attack in the men's room before leaving."
November 23, 2009: "Saw my radiation oncologist after .... She still wants me to keep the SP catheter in at least through the end of December, as she is anticipating additional swelling even after the SRT ends. Even being a Monday, there was considerable burning where the tube exits, doesn't feel real good. She is still really puzzled why I am having so much penis pain associated with the SRT. She said she can't figure out that part, and knows its complicates my situation. Her only guess, is that my body is just that sensitive to radiation in general, and other areas are getting a "scattering" effect that most people wouldn't feel."
November 24, 2009: "My complications were not entirely unexpected. Like my dr. said. she had never radiated anyone with an SP catheter in place. And she planned my treatments based on past performance of my hyper sensitivity to radiation in general. I feel she did a great job, the staff there has been very sincerly caring. You can probably tell from my posts, I am not into the blame game like some folks are. The complications I have encountered in my PC journey, definitely been a few, lol, I dont blame on my uro/surgeon, my gp, or the radiation doctor. Its because I am David Riley, and must be an odd duck and my body has its own quirks. No one to blame, just thankful my current medical staff is in tune with me, my feelings and my pain. And none of them ever rush me when we meet."
November 25, 2009: "Today was my 38th, one more to go. Experienced the most pain yet, in all 7 zapping positions, the SP tube and area, as well as my penis and rectal areas burned with pain. I almost signaled them to abort in mid-stream, but decided to eat the hurt and get through with it. Was a 25 minute session today. Couldn't even get my feet raised out of the body mould by myself. Took both techs to get me out of it, and seated up right again. I swear, had enough."
November 27, 2009: "Friday 1000 - completed the final and 39th radiation treatment. Took 25 minutes. Severe burning again at SP site, had to be helped up again."