Just thought it was time to start a new thread. Been a busy weekend with my sons Birthday party.
I am also tring to figure out how to help my dad and mom. They are undecided on what to do now that fall is upon us, go to FL or stay here. With not " knowing" how dad is going to do on the new medication. I am not sure if my suggestions are the best or not and I know that its what they want to do that makes them happiest that will also make me happy as well. So I wait and they go back and forth which way would be best. What makes it even harder any decision they have made since the diagnoses just has not turned out well. I can not imagion having to life around it.
Thanks for listening and thoughts and prayers to all,
A Friend Wendy
What new medication is your Dad taking? How is he doing?
I haven't posted on this forum in a while. Dave and I have been out camping for three weeks and just got home on Monday. When he was first diagnosed with stage IV RCC on June 27th and was so weak and feeling so poorly, we made a goal that we wanted to go camping again. We've made these small goals which give Dave something to look forward to and to strive for. Going camping was the first thing Dave wanted to do. Three months ago the doctor didn't even think Dave would be alive right now, much less out camping, so I'd say things are better than we expected.
Dave is still on Torisel. He has his 13th dose yesterday. He's had some nasty side effects, the worst of which are the mouth sores, and he's had some pretty bad rashes and soreness of the feet and hands, but the side effects are worth it if this cancer is being held in check. Dave had a CT scan about 6 weeks ago which was compared to the first CT scan. Would you believe that ALL of the tumors....yes, ALL OF THEM, have shrunk 20-to-30% in size??? The Torisel is working!! Dave looks and feels better since he started Torisel, too. He's scheduled for another CT scan in 2 weeks. If this next scan shows continued improvement and more shrinkage, then the oncologist said he can go ahead and have the left kidney removed. That would be great! Dave was deemed "inoperable" at the time of diagnosis because his metastases were so widespread (stage IV RCC, large primary tumor in left kidney, smaller tumor in right kidney, mets to both adrenal glands, both lungs, and lymph nodes in the chest) and also because of his generally weakened condition. He was so weak and debitated that the doctor didn't think he would survive the surgery. We are hoping and praying for a good CT scan result in 2 weeks so we can get this kidney out.
Dave has his good days and bad ones. He went for 12 days without eating a while back due to the horrible mouth sores. I made shakes for him, and this kind of got him through it. He is weak as a kitten, anemic, and tired all the time. We went camping, but Dave was physically unable to do much of the work or lift anything heavy. It was so heartbreaking watching him struggle to do things that used to be so easy for him. At one point, he became frustrated and nearly cried. He kept saying, "I'm so useless now." Seeing him like that broke my heart. He's still able to work just a little bit, not much, but a little. He gets tired easily, and that limits him quite a bit.
For now we're just waiting until October 20 to see what the next CT scan shows. I think it will be good news. Dave hasn't been coughing like he was before the Torisel was started, so I think the lung mets must still be held in check.
I hope all you kidney cancer warriors out there are doing well. I think about you all and pray for you daily.
So glad to see you back. Also glad you had a good time camping with Dave.
Sometimes thats what needs to be done. Have to live life and let the cancer sit back on the back burner. Other wise time will go by and the things you want to do there will be no chance to get done.
When my father was told his cancer had returned a year later we all went on a fishing trip, had a great time. Now there is other things he would enjoy although with the world the way it is who can afford to.
My dad is on nexavar and has been for about 6 weeks. He started out with a pill in the am and a pill in the pm. Max dose is two in the am and two in the pm. Although he had recently got off the med. sutent his doctor gave him some time to rest from that as he had some sides that were bothering him.
So here we are now with one pill in the am and starting two in the pm. As he has had his blood pressure go up as he increases his dose. SO we have to watch that as it could lead to a stroke. He was able to take the sutent for almost two years. It was no longer holding him stable so this is why the new meds.
My father has lung mets, left kidney mets (right kidney removed in 05) and he has it in the right pelvic bone and starting in the femur on the right. He has some we think in the thyroid as he has had thyroid issues since the cancer.I know there are a few other places but can not think of it now.
From what I read and hear from others he has done very well considering. Which I am so happy about. No one wants to see any one suffer and struggle to live life. At this time my sister in laws mom is battling IBC breast cancer and had both breast removed in april and now was told its back. I do not think this is very good. I feel for all those with this disease and hope some day they can cure it all. Probably not in my life time.
Hope all is well with my friends out there and thoughts and prayers to all.
Hi to all
I still check in from time to time. I am glad everyone that we have heard from is holding their own right now.
I am just ok. I won't dwell on me just wanted all to know I still care and I am thinking about them Mary Jean
Wendy, thanks for your nice message and the update on your dad. He really has done well in this battle. I hope the Nexavar works well for him. I've heard there are some nasty side effects with Nexavar, but that's the way it is with all these new drugs. Dave has horrible mouth sores, and my heart just breaks for him. I just keep telling him, "Wow, just imagine if this Torisel is doing this to your mouth, just think what damage it is doing to those cancer cells!"
I've really been worried about Dave for the past couple of days. Two nights ago he started coughing during the night. He hasn't done that since about the second week of Torisel. He's had no cough at all for 3 months now because the Torisel had shrunk the tumors in his lungs and lymph nodes. Now when I heard him coughing, my first thought was "Oh, no, the lung and lymph node tumors must be growing again." But he must have read my mind and said, "This cough doesn't feel like the same kind of cough I had before the Torisel." So that calmed me down just a little. Yesterday, though, he had a hot flash and was suddenly nauseated, sweaty, and really feeling hot and uncomfortable, just like when he had night sweats but this was during the day. I am just hoping and praying these aren't signs that things are getting worse again. He didn't cough at all during the night last night, which is a good thing. It is so hard not to jump to conclusions with every little ache and pain and cough he has that it's something with the cancer. I am really apprehensive about our CT scan which will be on Monday 10/20. I hope it is good news and that Dave can get his kidney out. That's what we are hoping for.
In addition to that, my 96-year-old grandfather is in the hospital on hospice care. The nurse just called me....his breathing is very irregular now, and they don't think he'll live thorugh the night tonight. I know I was somewhat prepared to lose him, but I am still sad. Just in the past 2 years now I have lost 3 grandparents, my mother, AND found out Dave has stage IV cancer. Wow. That's a lot to absorb. I am tired of grieving all the time.
Also, my little miniature Schnauzer, Ratchet, is very sick and the vet says if he is no better on Monday he will need exploratory surgery. It seems like the world is caving in on me. I appreciate your broad shoulders here on this forum, all you Warriors out there, who allow me to gripe and complain and cry and vent my feelings and still are so supportive. I appreciate all of you.
Mary Jean, I have thought of you quite a lot and hope things are getting a little better for you. I know you miss Stan terribly. I was just talking to my Dad, and he told me it really took him a little over a year after my Mom died before he even felt anything near normal. It takes a long time to heal after such a heartbreaking experience. Just take one day at a time and know that God loves you and is with you. And there are lots of people out here like me and Wendy who care and pray for you. I hope things are okay for you. Hang in there,
Nancy, you are very welcome. It is very nice to have those shoulders to lean on. I know I have been dealing with this now for three years. I have a hard time sometimes talking about it with my father. I do with my mom but its hard to do that sometimes too. As dad is always around. Thats not a bad thing. Its just he gets upset sometimes. But the thing is we have to deal with it no matter.
Wow you have had a lot on your plate and that has got you feeling like the world is crashing. I know I would feel that way also. We can and will do what we can. Thats all we are able to do. We can not change things and we can not take it away. As I am sure if we could we wouldnt be here talking about it. I know this is very frustrating on all.
Mary you are in our thoughts always and you are always welcome to pop in when you feel the need. We look forward to seeing you here. We will continue to be here for you. And Ellen too.. How are you?
I know with the Holidays approaching times will be tough. We are all here to hold you up.
Thoughts and prayers to all.
Nancy thank you also for your kind words. Please let us know how Dave's test come out. Positive vibes to you. Could he just have a cold ?
I think you were right, Wendy. I think maybe Dave just had a little cold or something that was making him cough that night. He hasn't coughed at all since then. He's so weak, though. We went to Wal-Mart yesterday, and he got dizzy and had to ride the motorized buggy. He is getting really discouraged. I keep telling him it's just the anemia making him so weak and tired, but I know he's really scared. His CT scan is in a week (Monday, 10/20). I'm so scared. What if the results aren't good? I am trying so hard to stay positive, but it's sometimes easier said than done. That, plus my 96-year-old grandfather passed away yesterday AND my little dog is sick and will most likely have exploratory surgery on Monday. I am so tired of everything going wrong all the time. I just want to cry.
I hope things go well with your dad. He sounds like a real fighter, and that is great.
Please keep your chins up !! I know the stress of all this can get you now and then. You will get through it all. SO sorry to hear about gramps. He at 96 must have had a great life. Wow if we all could make that age. My thoughts and prayers are with you at this time.
I know the scaniexty is sometimes unbearable. Been there plenty of times.
Please tell Dave not to worry until he has something to worry about. (the results from test) Yes easier said than done some times. I talk to my self and say "lets not jump to our own conclusions here" As we can not see through the body like a scan machine all we have to go by is the way they feel. Sometimes its the stress of the waiting and then the result. But we can do nothing at the moment so why get worked up about it.
Does Dave take any medication for depression and or anxiety? My father started lexapro and seems to be in better spirits. He gets down and it sticks a bit so we have to lift him up too. I know its hard right now for you as you are dealing with other issues at the time too. However I am here and you can come and cry on my shoulder, I will let. Have to know you can release those feelings to get over them.
Thanks for your encouragement and advice. I sure do appreciate your concern. Dave is doing a little better the past couple of days. He seems in better spirits, likely because the mouth sores seem to be getting better (for now). I appreciate your advice about an anti-depressant for Dave. Heck, I think I probably need one, too!! lol Dave does take Amitriptyline at night, but he might need a little more than that. Overall he's doing really well, but he is scared, and he is also very sad and is grieving the fact that he is not likely to live much longer. He had lots of things he really wanted to do. I keep telling him let's just take one day at a time because they're coming out with new treatments and drugs all the time, and if he can just make it a little while they will probably have something new to try in a year or two. That seems to encourage him a little. But I can only imagine the thoughts he must be having. He's so alert and "alive," and he does not want to die. Neither did my Mom, though, who died at age 66 from pancreatic cancer. I hate cancer!!
I'll post an update here next Monday when we get the results of Dave's CT scan. Thanks to everyone for keeping us in your prayers!
Thanks for asking about dad. He is tired as we have been moving them (my parents) into an apartment close by. We have been taking it slow however I think it can drag on to long to. LOL I know he had a boil last week on his side that was causing him pain. We have since taken care of that.
Today he mentioned to mom to check his lower back (rib area) he thinks he feels a lump there. Mom felt soemthing but not sure if he has a muscle pull and its puffy or if its a lump. I will ask him again in a few days and if it still is there we will call the doctor. His hair is starting to come out in his comb some. He doesnt have much so if it continues he wont have any in a month. I hope this doesnt bother him. He has been up and down with his feelings. Because of the apartment they can only have one dog and he has a black pug that they got a little over a year ago to some what take the place of one they lost. However he is having a hard time parting with her. He gave her to someone and after a week they returned her. They dont want to be bothered I think.
Anyway if we can get through the winter that will be a plus, I hope its not a bad one. They (parents) usually go south every winter. Not this year. Yikes.
I go for surgery in about three weeks myself and will laid up a little bit. I have to get all I can done before then. For home and them.
No rest it seems. Listen we all can use a little help now and then. Why suffer if you dont have to tell Dave to take a little something for aniexty and or depression. And do the the things as he would when he can. Dont let cancer take over now. I have a saying I saved I will share : " To live your life in fear of losing it, is to lose the point of life". Also another " Whatever you want to do, do it. There are only so many tomorrows. " I read these and think how true it is.
Hope all goes well from test. Please know you are in my thoughts and prayers.
A Friend Wendy
I am ok. I have alot of moments of tears and at times my heart really feels like it is going to break again BUT I get through them. Nothing will ever bring my Stan back but he does live on in my heart and our boys and our grandbabies.
I went away for the week end to my sisters about 4 hours away. Had a great time with alot of laughter. We had some cousins come and my other sister and her hubby and handicapped daughter. It was good but there was some sad moments. This is where Stanley and I went to get away and have fun and this is where we had the 4 wheeler accident that led to finding out about the cancer.
Well today the 4 girls went for a ride on a Polaris which is some type of 4 wheeler and we were going through alot of the old trails where logging used to be and all of a sudden a butterfly landed on the front seat between my sister and our cousin. we took pictures of the butterfly and then my other sister and I who were in the back of this thing ,like a bed of a wagon but real small, heard our cousin say look. Well the butterfly flew and landed on our cousins blanket around her lower half. My sister stopped the 4 wheeler and the butterfly stayed a while I turned around to look and take pictures and it open its wings to a BEAUTIFUL sight and fluutered them a liitle and eventually took off. I am soooooo postive that was my Stan letting me know he was there and he was ok becasue I always said if you can let me know you are ok. I really cried them but my heart is full because he was letting me know he was there with me still.
There is hope but never let go of your love that you have for your loved ones always keep it tucked where when you need it it can always be bought back out to feel and cherish. Mary Jean
Hi Warriors!! Mary Jean, I enjoyed reading your story about the butterfly. I am sure you are right: it was Stan letting you know he's doing just fine. I had a similar experience after my Mom passed away nearly 2 years ago. I was outside, crying, praying, etc. and just thinking about her. It had been raining for 3 days, and the rain had stopped but the sky was totally overcast. I was thinking about Mom, missing her, wondering what she's doing in Heaven, etc. Suddenly the clouds broke, and the sun came out and shone brightly for about one minute, then it went away. That happened on the one-year anniversary of her death, and the exact time (2:40 p.m.) she died. I knew it was Mom letting me know she is all right. What a wonderful story to share with us, thank you! I'm glad you were able to have a good time with your family.
Wendy, thanks for your prayers. I have an update on Dave. He had a CT scan yesterday. This time they scanned pretty much his entire body from the top of his head to his knees. The oncologist was looking for any reason not to recommend Dave for surgery to have his kidney removed. He had told us that if there were any new metastases then surgery wouldn't be worth it due to Dave's advanced disease stage. Well....we had good news. Not quite as good as the first CT scan (which showed ALL tumors had reduced in size at least 20 to 30%), but it was still good. This CT scan showed that there is no NEW growth anywhere. Brain, liver, bones are all clear. The many tumors in the chest lymph nodes and both lungs (over 30 tumors) have shrunk "a tiny bit." The huge tumors on his left kidney and adrenal gland have stayed the same and neither shrunk nor gotten any bigger. So....our oncologist now says Dave can have his kidney removed. He said the tumor on his left kidney is the size of a softball, and the adrenal gland is the size of a baseball. Wow....that's pretty huge, huh? Most likely he will have to have a radical nephrectomy, but there is still a slight chance that this can be done laparoscopically. We will get a referral to a urologist/surgeon within the next couple of days.
I guess that's good news. I was hoping for better than that. I was hoping to hear, like we heard the first time, that all the tumors have continued to shrink a lot. But still, having them stay the same is still a victory. No new growth. That's great! The Torisel is still working and keeping the cancer pretty much at bay. I think the doctor is worried that the Torisel isn't working quite as well as it was in the beginning, though. We hope having the kidney removed will be a big help as the doctor said that huge tumor is 90% of the cancer. Getting rid of that will make it much easier for the Torisel to work on the remaining tumors. Until now he considered Dave "so far gone" that it wasn't worth doing the surgery because the cancer was just "everywhere." That, and Dave was too weak back then. But he's doing much better physically.
He's more anemic and they gave him an injection of something called "Aranesp" that is supposed to make the bones produce more blood cells. Dave is tired all the time, but his mouth sores are gone for now (thank God) and he's in pretty good spirits.
Thank you ALL for your prayers. I hope to hear good news about your Dad, Wendy. Let us know how he's doing!
Please keep us in your prayers. Monday, Nov. 3, 2008 Dave will go in to have his left radical nephrectomy done. He is very scared. The surgeon said his tumor was too big to be removed laparoscopically, so they're going to do the "grand opening," as Dave likes to call it. I'm worried that he is going to miss two doses of Torisel, so that scares me, too. I hope this surgery helps Dave. We've been through so much, and lots more to go. Thanks to everyone who prays for us.