May 11, 2013 at 4:37 am #71051
Thanks Holly! I am going to pursue 2nd opinion. My PCP is helping me with that. he is just my family doctor but so supportive. The doctors at UCI seem to have been in disagreement about when to do my post SIRT radiation scans. The radiology oncologist said to wait 6 – 8 weeks & then when I saw the surgeon he wanted to do it sooner. So I had the MRI 5 weeks after the radiation. I am a little concerned about this tumor board meeting that they will not be together on what to do next. Thus my need to get 2nd opinion. I have only had the radiation treatments. No chemo yet.
You all are so knowledgeable! I am learning alot being on this discussion board. It is helping me so much.
Pattimelt!May 11, 2013 at 3:16 am #71050holly22aMember
I had sirispheres on Feb 20th and they would not scan anything for a minimum of 8 weeks – – 3 months is preferred. why? because the radiation causes the liver to become inflamed and annoyed and the mri’s look awful and are hard to read until that time. Then, you cannot tell if things are alive or dead even then. you have to look closely at ct/contrast and at pet scans but even more importantly at the NEXT scan 3 months out later. do not be distressed! it takes time and then full effects are 6 months out, even. Best of luck to you. HollyMay 10, 2013 at 6:08 pm #71049
Thank you lisacraine! Very encouraging to hear good results. I have been feeling really good this week. My anxiety causes some physical stuff but no nausea & the bad taste I was getting is gone. When I feel this good it is hard to believe I am in Stage 3 CC!May 10, 2013 at 2:33 am #71048lisacraineParticipant
My case has been presented at the tumor board meetings several times but I have never been present. I had steriotactic radiation three times. The first time I had it, my first scan results were not great…no change…..my radiologist said the radiation continues to work so we ran another scan in about 6 weeks and the results were excellent. Maybe the radiation isn’t done destroying your tumor yet.
LisaMay 9, 2013 at 4:52 pm #71047marionsModerator
Patty….Only specialist with expertise in the specific cancer take part in the meeting. The patient’s primary cancer physician will present the case and participate in developing a strategy based on the information given.
It would be way to difficult for a lay person to understand this conversation. The fact that a tumor board is taking your case under consideration always is a good sign, dear Patty.
MarionMay 9, 2013 at 3:38 pm #71046
Does anyone know or has anyone been able to be present when the ‘tumor board’ meets to discuss your case? My doctor is going to the tumor board on Monday & then we will see him afterwards.May 7, 2013 at 4:13 pm #71045marionsModerator
Patty…..agree with the T-shirt description and your comment in regards to the strangeness of this disease. Patty, from what we have seen, radiated tissue undergoes immediate and ongoing changes. Hang in there and try to relax (if possible.) The blood test will aid the physicians in providing a clearer picture.
MarionMay 7, 2013 at 2:51 pm #71044
Thanks Lainy. The MRI results were not conclusive. It did not show that my tumor had changed but the doctor said the radiation may have caused some swelling before it ‘shrinks’. This is a strange disease. We saw a guy at lunch yesterday with a t-shirt that said, “F— CANCER”! I never use that word but I wanted to wear that t-shirt yesterday!May 7, 2013 at 5:24 am #71043
Pattimelt, please don’t be discouraged as this is the strangest ever disease. For one I am glad that the whole Board is in on this decision making. You can find that many members got what they felt was discouraging news only to have it turn around for the better. We call this our roller coaster ride. What did he say that made you feel it was not great. In the mean timetry to do something a little fun and different during this little break. Wishing for the best for you and I know you will let us know right away. Good Luck.May 7, 2013 at 4:20 am #71042
I am very frustrated. The results of my MRI were not great but doctor said he needed my bloodwork redone to see what the CA 19 will tell & then present my info to the tumor board to decide if I should have a 3rd sirtex radiation or move on the Chemo. I am feeing really down tonight.April 24, 2013 at 7:11 pm #71041gavinModerator
I’ve never heard of that either and did a quick google for it. Seems to be lot of sites making outlandish claims about it to say the least and one even claimed that it was more valuable than gold! If it is more valuable than gold, why does it only sell at $90!! I’m with Lainy and your docs, keep your $90 to yourself!!
GavinApril 24, 2013 at 3:45 pm #71040
Dear Pattimelt, I always go with my gut feeling and it never steers me wrong. If your Onc says no, I would’t touch it, as it “rubs” me the wrong way. I know friends and family mean well but why can’t they take no for an answer. When my Teddy got sick, in the beginning, I let people know in a nice way that this is a strange and rare Cancer and I would appreciate more if they were just there for us and please NEVER tell me what to do or suggest because unless you have dealt with CC you cannot begin to know. It worked! I just didn’t have brain or energy enough to spare to argue with all the well meant suggestions.
P.S. I just researched this Company and they had a 2* rating out of 5. Buyer beware.April 24, 2013 at 3:09 pm #71039
I have had some friends suggest that I use doTERRA essential Frankincense oil. Has anyone tried this ‘alternative’ medicine? One of them was determined I do it & gave me a bottle. I said I couldn’t afford it (it is $90) so she gave it to me. My massage therapist also suggested I rub it on the area of my tumor! I am such a sceptic & my doctor doesn’t see any benefit of it.April 24, 2013 at 4:03 am #71038
Next Tuesday, April 30th. Then May 6th with my doctor to get results. Lots of waiting because of all the authorizations I have to get.April 24, 2013 at 1:04 am #71037
Excellent, Pattimelt. So glad you are feeling better, onward and upward. When is your MRI?
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