[becca53]

My fiance was diagnoised with metastactic renal cell carcinoma stage1V, that has gone to his lungs and had a brain scan today, to see if it has metastisized there too, his first brain scan. was done Aug 1st and it was neg...His symtoms he is having are nausea and vomiting, with some what of a personallity change, i am seeing it and you'd have to really know him well to see this change..He was diagnoised the first of August of this year, and he just had his kidney, adrenal gland, which had two tumors with mrcc in it and all six lymph nodes, only one was affected with this horrible disease.. We waited months for the surgery, he just had it done November 17th, his first surgery was canceled at the last minute on Sept 19th, due to him blacking out which brought him to the hospital in the first place, the surgeon wanted more cardiac test done, which were done 3 weeks later and all neg..I informed the surgeon's office that he was all set to go and somehow there was a date for Oct 23rd which no one ever let us know about, it was canceled a week before due to a meeting that was on that day for the urologist all surgeries were canceled that day.. I found out by mistake and was so upset i have been chasing down doctors the surgeon since day one i contactacted the office for the first app, which i insisted that they take him right away...I am so upset by all this, he needs borderline chest, abdomen, and pelvis scans done and they are going to repeat the brain scan again, but he won't have them done till after Christmas, i can't get him to change his mind, he says he is to sick right now to even try to drink the contrast and he told me tonight he is scared too, and i am trying so hard to be positive, but i am scared too and i don't want him to know how scared that i am... Does anyone out there know anything about brain metastesis or has been a caretaker that can help me, try and understand or anything that i should be looking for ?? Thank you for any replies that coulf help us get thru this, we should have an answer tomorrow with the results of the brain scan...
Thanks for reading,
Becca

[dwjake]

Becca, I am new to this post...but I wanted to send you a note after reading your post. I hope your fiance is feeling a little better right now than he was in your last post.

I am a 39 year old male and was recently diagnosed with Renal Cell Carcinoma. At this time, mine seems to be confined to the kidney (according to the scans), which have only been done of my chest and abdomen....but sometimes, I feel as if my memory has slipped...and I cannot get out the words as clearly and quickly as I used to. I also seem to have a shorter fuse than I used to, going from calm to shouting in short order...but I do have four kids that fight a lot and a new dog which can definitely add to my stress level at times. I know that Renal Cell Carcinoma is a tricky one if it becomes metastatic....that it is not really very predictable. CT scans also showed some small spots on my lungs...that will just be followed in the future.

There are many studies out there at some of the higher institutes of learning for metastatic patients....you probably are already aware of them. I received my initial education about kidney cancer on the Kidney Cancer Association website: www.kidneycancer.org

I hope that you are getting care at one of the top institutions. I am going to Northwestern Memorial Hospital in Chicago. But I have heard that Mayo, UCLA, Sloan Kettering Cancer Institute in New York are all really at the top as well. How old is your fiance and when was he diagnosed?

You and your fiance will be in my prayers.

[becca53]

Hi,
i am so sorry that it took me so long to get back to you, Tim is 56 yrs old, both you guys are to young to be going thru a terrible disease as this, especially you..Tim was diagnoised Aug 1st of last year on an emergency room visit, unrelated to the cancer, but that next day we were told the devastating news..You know, you are under an extreme amount of stress, so as for forgetting things, and the eractic mood swings are very common for knowing that you have rcc, i do see that alot in Tim...Tim has had 2 brain scans and just had a repeat brain, chest, abdomen and pelvis the other day, his 2 brain scans seem normal, but all have been done without iv contrast, his blood creatinine level is elavated, with only one kidney, the oncologist doesn't want to take any chances with his good kidney, the iv contrast is hard on the kidneys..We live in a small city and we are seeing a very well known oncologist, that Tim and i feel very comfortable with right now, we started out at a well known hospital in Mass. his surgery was there, and we did see an oncologist there at the time, but we both didn't want to travel, and the care that he is getting now is better than he would of gotton there..Tim is doing very well right now, he has started his treatment with Torisel, he finished his 4th treatment Monday and is having very few side effects, i am very proud of him, he starting a small rash, and does have nausea, but doing so good.. If Tim is bothered with to many side effects, i know him he will stop treatment, for him quality of life is what he wants, and for me is whatever he wants to do...So for giving Torisel a try is a big step for him, for that i am grateful,...
So please tell me how are you doing ?? I'm sorry that i talked so much about Tim, but he means the world to me, i am sure your your wife feels the same about you, please write back, i would really love to know how you are and how things are going for you and your family..
You and your family are in my prayers,
Becca

[dwjake]

Hi Becca,

Good to hear back from you. I am glad that Tim's treatments with Torisel have been going pretty well. Keep fighting with him to get past all of these obstacles. I understand what you are talking about with regard to quality of life being Tim's primary concern. I feel the same way....sometimes its not so important how much time you have, but how you feel during that time. During the emotial roller coaster that accomanied this news, I have mentally prepared myself for the worst, though hoping praying and fighting for the best.

I actually had surgery last Wednesday, 1/28, a partial nephrectomy to remove the 5.5 CM diameter tumor. The surgery was a tremendous success, leaving me with about 60% of my right kidney. I had a consult with a neurologist while I was there and also had a MRI of my brain. Everything checked out clean up there....and I was discharged on Monday 2/2 of this week. All in all I am feeling real good....and I have no follow up treatment required at this time.

Trying to put in a few hours per day at the computer to catch up on emails and such.

I am glad to hear that you are very comfortable with your doctor. I undersand the desire to stay close to home. However, the surgeons in my immediate area were not prepared to perform the surgery that I had done....so I actually drove in to Chicago for the procedure (35 miles).

I wish you and Tim continued success with the treatments and excellent quality of life for the time that you do share together. Keep me posted on Tim's progress. You will be in my thoughts and prayers.