Papillary Renal Cell Carcinoma- Anyone Experiencing This, Is A Survivor? PART 2 - STILL GOING STRONG

imbkuz said:

Thanks for Part 2
Carrie I know Dawn is absolutely right...your mom is definitely smiling down at you. She's surrounding you with angels. I've never had the honor to meet such a fine young lady. I don't know how old you are but you seem wise beyond your years. Your mom must be so proud of you as is the rest of your family. I'm beaming with pride and I've never met you ..just by your posts. I might have said this before that my son is having a difficult time dealing with his dads diagnosis...advanced renal cell carcinoma stage IV etc., etc. They're close. As a matter of fact they just came back from walking. Carrie I wish your spirit would rub off on him. I can't believe it's a month since your mom's passing. I'm so sorry. How was today for you and what have you been up to or not up to? Are you taking time for yourself?
How are the people at work treating you. I guess my main concern is have people been there for you? Well here's a cyberspace hug!
Dawn...we'll be watching for your posts. Does your husband realize how lucky he is to have a wife like you. What a wonderful daughter in law. You know how you hear about those nightmare in laws....that's probably what I'll end up with or as:)
What meds is your fil taking? You did mention it but I'm a little tired to go back 89 posts:) Was it Torisel? Is he still married and how is your mil taking all this? Or is that why your husband is going to Ohio to be with him? How has he been feeling lately? I will definitely be praying for your family extra hard.
My hubby goes this Thursday for blood work and urine testing. What should normally be a couple of hours ends up a very long day but the doctor is definitely worth the wait. It's just very draining realizing that you're "there." I crash when we come home. Then in two weeks after Thursday the big CT scan to see if tumors got bigger or shrunk. Last time they got bigger but that was before the Sutent so I pray it's doing it's job. I still have days where I can't believe it. It was all a mistake and that he's fine and will go back to work. There are times where I can't hold back and just start crying wherever I am. I know that I'm not supposed to cry in front of him and sometimes that's so hard to do.We have a long story but it would take forever.
Well enough babbling for tonight.
All my heart
Babs

bangormom said:

Hi everyone,
Thank you so
Hi everyone,

Thank you so much for all your kind words and prayers. Dawn, your phone calls are a blessing, we did not reconize your cell #, thats why we didn't answer,(bill collectors wont stop calling) you are not a pest, I love hearing from you all in any form.

What I need is all the prayers you all can give, miricals still happen, tho I'm losing some of my faith. It's hard to hang on to when things just keep going down hill. I try to stay possitive but it does get hard. One thing that is getting on my nerves is everyone telling to eat, I'm down to 89lbs I know I need to eat, and I try. When I'm real sick I tend not to eat I'm sure you all know what thats like. I'm doing the milk shakes made with boost lots of cals there! Small meals, candy, whatever I feel like eating, but I think I'll go off the deep end if I hear "you have to force yourself." I hear that so many times it makes me want pull whats left of my hair out by the roots! I know they all mean well but one has been droping off diners just for me 3x's a day, last night I ate a small serving of mac n cheeze, she insisted I eat the burger and fries while she was here, I had to keep reminding her that I had eaten what I was able to and all I wanted to do was go to sleep, I didn't want to hurt her feelings but if I can't eat then I can't.
It makes me feel like a meanie, but she shudn't waste her money on food I am not able to eat, so I let the kids split it. I just hope she doesn't find out, she'll be angery with me. Oh well that's enough about the eating thing.

Notice I haven't mentioned hospice yet? Well here we go, the hospice nurse comes on monday to talk about the benifits that it offers. I have heard that I will know when it's time, and I am hoping that is true. I feel pretty good right now, it's the when the next bomb will go off that really bothers me. I just know right now I don't want to die, I'm just not ready yet. My oldest daughter has so much on her plate emotionaly that I can't go right now, it turns out my exhusband is in the same room at the hospital I was, it turns out that his luekemia is back at stage 4, so being 22 with 2 parents with a terminal illness, I don't know how she even gets out of bed in the morning. So see, I have 'stuff' to do.

Well time to force feed myself again. I really just want you all to know that I am greatful to all of you keep praying please.

Maryann

dawnmomofthree said:

Any Advice for High BP?
Hello everyone,

I haven't posted in awhile. I have been crazy busy with my kids and my fil has been doing pretty well on the Sutent for now. The one thing that we can't seem to get under control is his blood pressure. It is too high while he is on the Sutent. He already had high BP even before taking the Sutent so I'm sure that is a factor. Anyway, his doctor has warned us that if we can't get this BP down, then they will have to take him off the Sutent. We don't want that because the Sutent has shrunk his tumors big time. So anyone else have BP problems? Anyone find a medication or other treatment that helped?

Maryann, don't know if you are out there or not, but I hope you are feeling good and taking care of yourself. I miss you more than you can realize. I am praying that you are comfortable and feeling good.

Donna-Lee I hope you are doing good too. What have you been up to lately?

Carrie, how are you doing? I know we have been emailing some, but I always love to hear about what is going on with you too. Have you seen any good movies lately?

Babs--how is your husband doing on the Nexcavar? How is your son feeling?

Others out there--hello to you too. I hope this message finds all of you feeling good.

Have a great weekend everyone.
Dawn

donna_lee said:

Yucky summer cold
I've been battling this thing for over a week now. I first thought I'd stirred up allergy problems, since I was pressure washing the green stuff off the decks and patios. Also cleaned out the garden tool shed and came across lots of dust and a couple of mouse and/or squirrel nests. It went bacterial, so I've been antibiotics for 9 days; but the post nasal drip makes me cough really hard, so I've been staying away from family, grands, and others.

My dil had her post pregnancy and c-section muscle tears repaired 2 weeks ago. One layer had a 4" separation. She definitely didn't need this cough. My son brought the girls out to pick ripe blueberries. They each got a coffee cup full, which made them happy.

Last week we got the news that my son-in-law has his Immigration Visa stamp. He'll be arriving in Portland on the 12th, so the rest of the family is happy!!!!

Between this cold and working long days, I haven't been on the i-net much. Best to all.
Donna

ruthelizabeth said:

Hi! I've just been skimming
Hi! I've just been skimming thru and thought I'd add a note. My husband is on Afinitor; it's his fourth week. Had his right kidney removed three years ago. A year later they began testing to see if they could find a nodule in his lungs that was big enough to biopsy. A year of tests later they found it in his lungs and the lymph nodes in his chest. He started on Sutent. At that point we discovered that our oncologist was ummmmmmmm someone we needed to run away from. (Anytime you make an emergency night call to a dr., get a 4-word answer and are disconnected from and can't reach again, you realize you've got a problem. When the dr. can't remember the incident four days later, you run out the door.) We're with a good man now, connected to the Moffett Institute, very good with patients and meds.

Sutent gave us lots of side effects and wasn't effective. Torisel seemed to do a good job; we heard that it had cut his cancer back 50% in late April after 4 months on it. However, it's come roaring back. Lumps everywhere. Somehow actually seeing them is scary.

Tolerating the Afinitor fairly well so far. Is now on Atavan because he's started to have trouble sleeping. Losing weight.

He has a good attitude. Very positive and tries always to see things in the best light. Still keeps very busy. Has begun having a lot of chest congestion and coughing up stuff, but we had that at the last with the Torisel.

I am trying to be positive, too, and I can be when I'm with him. Dr. scared me a little the one minute I saw him alone, but this med may work. I am trying to deal with his kids and their attitudes; my stepmother club has come into play lately.

Ruth

sallyvel said:

So Sad to hear this!
I never even emailed directly to Maryann but I feel that I knew her from reading all the posts of this thread. I am so sorry too learn that she lost her battle with this disease. She was a real inspiration to me as my husband and I grasped the meaning of "you have a kidney toumor". Our hearts go out to Maryann's family.
Sallyvel

donna_lee said:

Sorry about the news
To all in this group -my regrets to hear of Maryann. She was a real trouper and offered so much information and encouragement to all. For anyone who is in direct contact with the family, please pass along my condolences.

On a lighter note, my s-i-l arrived in the states on 8/12 and he, my daughter and the boys came down to visit this weekend. It was great to see them, and know that he can stay here. We had a BBQ with them and son and his family on Saturday night. With all the allergies, there was lots of fresh, farmers' market produce we cooked to go with the steaks and chicken. Everyone has departed so it has quieted down. I'm glad the cleaning lady arrives tomorrow...but I had to pick up stuff so she could find the floor to vacuum. Lots of laughs and visiting

Regards to all, Donna_Lee

ruthelizabeth said:

and now....
Seems Don has a mix of some clear cell with papillary RCC. The dr. is going to try Afinitor for one more month (total of three months then). At that point unless the Afinitor suddenly takes hold, he will either go to Avastin with Interferon or consult a specialist at the Moffitt Institute in Tampa.