Hope all had a great holiday season.
I ended up with shingles through the whole season. Have not worked since Christmas eve hope to go back Monday.
I know it was my good Lord's way of helping me get through this first year without my Stan.
I checked this board every so often and think of all who is here and has been here.
God Bless.... Mary Jean
Wendy, Mary Jane, Nancy and all. Thought about all of you.
Keith is now taking Torisel by drip each week. They have to check his creatin level on his one kidney. If it goes up to a certain point they will have to stop it. He has about two days that are rough so far right after the drip. One is because he has to have a dose of benedryl to ward off an allergic reaction to this med. They say that it is the going medicine today for RCC. We will see. I will keep you posted.
We have been a little sad. Keith met someone at the cancer center that had RCC. They talked and talked like two little boys because they were glad to have found each other to compare notes. This was in January of 2008. The friend had mentioned the Torisel and how excited he was to hopefully take it. Well, here and there they got busy with life and my husband called the other night to compare notes to only be told that he had passed away. It floored him. The sad part was that Torisel had not been approved soon enough for him to try it. It broke our hearts.
Talk later got to get to working. Jackie
Would like an update on everyone.
I really look forward to hearing from you. I get some what worried when the time goes by. I am so sorry to hear about Keiths friend at the treatment center. Best wishes to him with the treatment. I know the side effects are the wost part of dealing with this. He's been and will continue to be a very strong man. He is a true warrior. Please tell Keith hello from dad.
Dad and mom left for FL on the 12th. They were not going to go. However I could sense it was doing dad no good sitting here and getting more and more down. He said the other day he would be cured when he got home. Wish it worked that way !! He has been doing okay. He has lost about 30lbs with the nexavar so far. He is still within good range for weight though. He is very tired at times and has had some skin issues with this medicine. He will have another scan in March.
Mary Jean and Nancy how are you doing? Ellen? I know theres fewer and fewer visits here. As always thinking about you all.
Any way as for all the friends I have met here it worries me when I have not heard from you all.
Sorry I haven't posted on this forum in such a long time. I am glad to hear from all of you and hope you are all doing well so far in this new year, 2009.
Things are not so good here. We found out on Monday 1/12/09 that Dave's cancer has metastasized to his brain. There is a tiny, 4-mm tumor present with some edema around it. That was devastating news. Dave is having a "symptom" of this, as occasionally his left arm goes numb and tingly for a while. That is supposedly from the brain tumor, even though it is very small. Right now he's doing fairly well. He had his nephrectomy in November and has recovered nicely, and other than having mouth sores from the Torisel and being pretty weak and shaky, he's going about his daily routine and trying to enjoy each day as it comes.
Of course, I've been emotionally a wreck. I'm so tired of being heartbroken all the time. It seems like one thing after another. I've been so tired I just haven't really been on the computer a whole lot. Seems like some days all I can do is cry, yet I try not to do it around Dave because I want to support and encourage him. I'm trying to hold myself together, but it isn't easy. Only by the grace of God, and I know He is with me, that I can get through these difficult days. And I know there's a lot more in store for me. It is disheartening to think about.
You are all wonderful people, and I wish each and every one of you the very best. I hope 2009 will be a better year for all of us!
Hi to all
Yes I still have some discomfort with the shingles and have been told this can go on for a long time. I am back to work and have started night classes a computer class. I goon Monday's and Wednesday's from 4pm to 5:15pm. I also have started a breavement support group through hospice and that started last Wed. at 1pm so it has been a lot of firsts in one week.
Still have tears but maybe not as many as before. The sadness will always be with us all in some way or another, that is something we learn to with. I hate HATE HATE this new life of mine without my dear dear Stanley BUT I still love what GOD has be here in this life for. I hope that makes sense to you all.Life is not the same and never will be but it still is a life and I know I have to go on because for one that is what I am suppose to do and it is what Stanley wanted me to do AND I KNOW THAT MY SUFFERING IS NO WHERE NEAR AS BAD AS WHAT OUT DEAR JESUS WENT THROUGH ON THE CROSS.
Everyone know yuo are in my thoughts I just don't visit here as much as I used to. Mary Jean
I have learned through this journey of 7 years when there seems no hope there is some hope even if small. My husband with RCC has had 4 lesions to his brain. He was offered gamma-knife. It is a percision laser of radiation that pin points just the bad cells and does not touch the other cells giving less chance to negatively effect the brain. We had it done in New Orleans and they did and interview with him which is online. Ask your Doctor about this.
Mary Jane..my prayers are with you. I can't even imagine your loss.
Wendy, How's the dad? Tell them hello for me.
Not sure how the Torisel is doing for hubby. Makes him weak. Seems like he has new symptom each day.He says if it has not done any good in a month he wants to go the route of getting the spots in lung out by surgery. We will see.
Love all of you! Jackie
Thank you for your kind remarks. You mentioned your hubby's interview about the gamma knife is online. Where can I find it? The lesion in Dave's brain is tiny at the moment, only 4 mm. The doctor said it is so small we can't do much about it right now. Is that true? It seems to me that NOW is the time to attack this before it can grow and spread!
Dave has been on Torisel now for 34 weeks. It has literally saved his life. When Dave was first diagnosed on June 27, 2008 he was so weak and "so far gone" that he was deemed inoperable and they wouldn't take his cancerous kidney out because he wouldn't have survived the surgery. They immediately started him on Torisel, and after 6 weeks all the tumors (yes, ALL of them) in his kidneys, adrenal glands, and lungs as well as the tumors in the lymph nodes in his chest had shrunk nearly 30%. Not only that, but Dave had stopped coughing and was a lot stronger and feeling better. He was so much better that he finally had his nephrectomy last November.
The Torisel has had some nasty side effects for Dave, the worst of which are the mouth sores, but it has literally saved his life. I know it is kind of "individual" whether it works or not, but I am hoping your hubby has a positive response to it like my Dave did. The last CT scans showed the tumors are all still stable, neither growing nor shrinking, but now we do have this new brain lesion to worry about.
Dave doesn't like the Benadryl, either. It makes him feel weak and sleepy, but usually the day of Torisel we come home and he eats and then goes to bed.
Hang in there, keep fighting. You are ALL in my thoughts and prayers.
I am so happy to see everyone has stopped in again. I know that its a journey we all wish we were not on. I feel the steps we all take together make it a bit easier. I know we are not all on the same step in this but we can be there when need be. A shoulder to lean on an ear to listen. Thats what I am offering. I hope that every one knows without each other this would be so much harder to deal with.
I just wanted to say I am thinking about you all and hope this finds you all having a good day. Jackie, Nancy and Mary Jean !!! I am here today and any other day you need me to be.
Look up gamma knife/ keith interview and you will see the interview and it tells about this process. I don't want to be thrown out so I won't use last name.Just see the interview where I call him Frankstein and thats the one.We decided to get this because it pinpoints. Whole head radiation we were told causes more memory loss and this as for as we know did not bother him other than his eye sight some and we think that is just from age. They asked us to do the interview and we did to hopefully help someone else.Like you said each person is different but thats what we decided to do.It is really neat and we filmed it. They have to screw a metal contraption to their head. You can look it up and see. It holds the head in the exact place. Doctors and engineers sit and calculate this to perfection. Best thing since bread. LOL We always try to see the lighter side of everything he has had to do and this was one of them with his name being Frankinstein. LOL
Thanks so much for the encouragment about the Torisel. He has been very depressed because of the weakness and I just read what you said and it gave some hope. He had went the last time and his creatin level was up on the one kidney but he went yesterday and it was down so I am almost sure it is doing some good.
Hang in there and when it gets rough tie a knot and hang on longer!Hope Dave feels better sooon. So glad he was able to get that bad kidney out.
I read Keith's interview about the gamma knife, and it was very encouraging. Thank you for your support, Jackie! I appreciate it.
Wendy, how is your dad doing? I hope things are better for him. I have been praying for him!
Mary Jean, you are still in my thoughts and prayers. I know life is really different for you since losing your Stanley, and I just hope you know there are so many people who love and care about you, and you are not alone.
I got some shocking news today, and I'm really pretty bummed about it. I had a horrible gall bladder attack on New Year's Eve and was in so much pain I nearly went to the ER but managed to tough it out. The severe pain abated, but I was "uncomfortable" for the next couple of days. I feel okay after that, though, and have not had any more pain. I went to my doctor for prescription refills on Monday, and I mentioned my gall bladder episode and told him my mother had died 2 years ago of pancreatic cancer. He thought it would be a good idea to get a CT scan on me. I got the results today.
I have a mass the size of a golf ball sitting right on or next to my pancreas. It is not "in" the pancreas itself, as far as they can tell, and at this point they don't necessarily think it is cancer but I'll have to have a biopsy just to make sure. In addition to that, there are multiple cysts on my ovaries and fibroids in my uterus. I'm severely anemic, and the doctor thinks this is due to my uterine problems. I will need a hysterectomy for sure, and probably will also have to get that "thing" out of my pancreas.
The weird thing is....I am more worried about Dave than myself. His RCC has metastasized to his brain, and the MRI he had showed his tumor is 7 mm. He's going to see a radiation oncologist on Tuesday to see what our options are. I now know I will, at the very minimum, be having a major surgery. "If" I have cancer, then who knows what lies ahead for me. I am going to have to hurry and get myself taken care of quickly so that I will be able to care for Dave if/when his condition worsens. And, to top it all off, my little dog is extremely sick and will most likely have to be euthanized next week. When it rains it pours!!!
I have not lost my faith in God. I guess there is a purpose somehwere in all of this, even if I don't know what it is. Please keep me and Dave and my little dog Ratchet in your prayers. Thanks to all of you for being there for me!!
How is everyone doing? I hope this finds all well.
I am so sorry to hear of your troubles. I had a hysterectomy in November. All is ok now. I am thinking about you with all the issues you are dealing with. Thoughts are with Ratchet too. Please let us know what you find out. On you and hubby. Thanks for asking about dad.
Thanks for asking about dad. He's doing ok. He is in FL for another 5 weeks or so. Wish it would warm up there for them. How is Keith doing? I am thinking about you both as well.
I think we are going to have to start another post. As we have a large one now. I will start it and it will be Kidney Cancer Warriors Part Three
Sorry to hear all is happening at once. However, I do have a question. Have you expeirenced weight gain? Either sudden and then 1.5 lbs approx per week and you just can't stop it? I am asking because I have a giant hemangioma I am having removed from my liver however I have also had this serious weight gain and doc is looking for a tumor on my pancreas or in the endocrine system. He couldn't test for it as my insurance would not cover a nuclear test -- they called it experimental. thanks
Keith is in the hospital. He was rushed to emergency room Tuesday morning. We spent Monday geting two bags of blood because his count was down. He had been on "torisel" but it didn't help. He has cancer in his lungs and cancer tumors popped out in different areas of his body on the outside. He also developed another brain lesion.
He has 4 tumors in his stomach. All 4 are ulcerated and one burst and he through up blood and we almost lost him. If I had been 20 minutes later getting help he would have been.
One lung has fluid in it and is caused by the cancer. They drained it once but no more because it will just fill up again. He was gasping for breath but they have him on morphine and he rest but is alert and can talk without panic and pain.
I ask all to pray because they say that the tumors will burst and he will hemorage to death and I pray that we don't have to witness that and God will be merciful and take him in his rest so he won't suffer.
He has really rested btu woke up alert yesterday and wanted alot of stuff done that he had not done. He made me power of attorney and our two sons came to his bedside and they discussed together what he wanted them to each have of his if he is called home. As I sat and watched this I was overcome by my husbands awesomeness. Even in this time of this journey he still stands strong and wonderful as a lion in our eyes.
As I sit here in the wee hours of the mornings watching him take a breath and not knowing what the next minute will bring all I can say still is "God Is Good". He is our strength and comfort and will not forsake us.