Got husbands results

[Taylor Jo]

Oct 3, 09. Yesterday went and got my husbands final report that was from his oncology Dr. which was his Pathology report. It say's "FOR THE PATIENT THE PROGNOSIS IS "VERY" POOR" hOWEVER, the drug named ........... is known to treat this type of tumor well. His chances of survival are DIM.

Social: His wife rises short horse for a living. (LOL)

Family: Very support

Patient: Wanting to go ahead with treatment even though outlook is Dim. Pt aware of this.

This is what I read yesterday with the whole family here, I DID NOT have a good day yesterday cause I was unware of all that, as was my husband.

 

[rockin r]

I am sooo very sorry to read this

Someone (??????) tells me all the time to stay postitive, and live each day to the fullest. love each other as you have never loved before. It may or may not change the outcome, but daily life will be easier. Cherrish every moment.. My heart goes out to you and your family...Hugs to you my friend.....Theresa

 

[crponies]

Praying for you and your husband. This would definitely be some very tough news to get.

 

[Jill]

TJ, I am so sorry

I don't know what to say, but this would be my worst nightmare for my husband to be in that situation. Stay strong, and pursue that treatment. I am just so sorry!

 

[Charlene]

TJ, can you remember the name of the drug?

i've been down this road, i know what you're going through right now and i'm so sorry.

 

[Littleum]

TJ, we're so very sorry and are thinking of you both.

 

[loveminis]

I dont know what to say..... I'm sending some prayers

You are a strong lady

 

[Taylor Jo]

He has a "renal (L. Kidney) mass, mutiple lung and liver masses and emphsyema along with lymphadenopathy." Stage IV poorly differentiated cancer.

The drug their going to use is Temsirolimus. Median overall survival times in the interferon group (if they use interferon) the temsirolimus group and the combination-threapy group were 7.3, 10.9 and 8.4 months

Conclusions: As compared with the interferon alfa, temsirolimus improved overall survival among patients with metastatic renal-cell carcinoma and a poor prognosis.

No matter how you slice it, it doesn't sound good. Thank you all so much for your heart felt prayers, thoughts and loving kindness. I feel it upon these pages as I read them. I feel the love and the hurt you also feel for me and my husband. I SOOOO appreciate it. These past few day's have been horrific for me. I can't sleep for fear he'll die in his sleep so I keep waking up checking on him. I just so scared to death. Getting this report yesterday has hit me like a ton of bricks and then having his family here has put me on an emotional rollercoaster. On on my daughter in laws was soooo wonderful and she left today and I'm just beside myself I miss her soooo much. Everytime I think about her being gone I cry. She was so helpful and a wonderful emotional support. It's almost painful not having them here. His other son and his wife and family are here now and their wonderful and it's nice to have them here, but their not Kenny and Lynne. I know we'll be ok and they said they'd come back, but when my husband goes will I still have these wonderful people or will they all go away, it really scares me. My step daughter who lives here, I cause just feel the ooze of dislike from her. Yesterday was NOT a comfortable day being around her. While all the women were in the kitchen getting dinner ready and she was bossying everyone around I went out to the barn to feed horses.

I spent an hour out there enjoying my world and didn't have to spend it with her. I was in 7th heaven, then Kenny came out and helped me and we talked. Then it was time to go back in and go back to reality. I hugged him on the way back in and told him how much I appreciated all what him and Lynne did for us while they were here. They REALLY enjoyed the mini's and Velvet the biggy. They helped me feed, water, clean stalls, it was nice to have the extra help.

Love to you all, TJ

 

[twister]

I am so sorry to hear this TJ, my thoughts and prayers go out to you and your husband.

<hugs> Yvonne

 

[wildoak]

I'm so sorry to hear that your husband has such a poor prognosis. It's wonderful that his family is rallying around him and is there for you as well. Be strong, you have our prayers too.

Jan

 

[Charlene]

Temsirolimus is one of the new drugs being used against kidney cancer. gary started out with interferon, graduated to Sorafenib but Temsirolimus had not yet been approved by the time he reached the end.

TJ, do NOT look at the statistics for median survival rate. they will only discourage you and you MUST think positively. your attitude will go a very long way in keeping your husband's outlook bright. gary was given 6 to 9 months when he was diagnosed at stage IV renal cell carcinoma. he lived another 21 months. a LOT can happen in that span of time. there is research being done and new drugs being discovered every day. please try to be positive and you get busy and FIGHT for your man!

i urge you to go to the kidney cancer association website. there are tons of helpful people there and the website is VERY up-to-date on current treatments and options.

 

[Taylor Jo]

Oh thank you Charlene I have been so overwhelemed with the news that I have just been devastated. I WILL fight for him, I just have to know what to fight for. I'm so happy to hear this is a new drug. His Dr hasn't told us BUNK...... It's VERY discouraging when they don't say anything..... Thanks again all, TJ

 

[Jill]

TJ --

Is there a "Cancer Center" around you within any reasonable distance? As opposed to just a stand alone doctor or stand alone oncologist?

I ask because when I saw the oncologist, he was part of a big, multi location cancer center which was a very, very nice facility. While waiting to talk to the doctor, I read through the materials they gave me and they really have a big amount of services, more so than I think a single doctor could provide. They also participate in drug trials. If I were going to need treatment, I felt like it was really good to go the big time cancer center route, vs. a single doctor.

I am praying very hard for you and your husband.

Jill

 

[Charlene]

TJ, i do know how overwhelming this diagnosis is. here is the website i was talking about...

http://www.kidneycancerassociation.org/

i haven't been there for a very long time but when i did go during gary's illness, the people there were wonderful and very knowledgeable. something you should do is keep a note pad with you at all times. when questions or ideas occur to you, write them down and take it with you to your next doctor appointment. the first couple of appointments we had with gary's oncologist, i took a little tape recorder. so much of the talk is technical, hard to understand, but since i had it on tape, i could do my research much easier.

something else, and i agree with jill on this...get a second opinion if you don't feel comfortable with this doctor. your oncologist should be willing to take as much time as you need to answer your questions and discuss your options. a doctor that brushes you off, just because the diagnosis is grim, does not have your husband's best interests at heart. gary's oncologist was WONDERFUL! he spent a lot of time with us at each appointment and never left the room until he had answered all of our questions satisfactorily. it was very important to me to have a doctor we could trust and who would take time to encourage us. i can't say enough about him...i still keep in contact with him. occasionally, if i'm in the city, i will drop by his office just to say hi.

did the doctor explain side effects to you and how to lessen them? did he give you any printed materials to look at? it's so important for you to know what to expect. when you have an idea of what is coming, it's so much easier to deal with. and i cannot stress enough...do NOT go by what you read on the internet. i made that mistake. i came home after that first appointment and did a search of kidney cancer. everything i saw made me frantic until i found the KCA website!

 

[Basketmiss]

Oh so sorry TJ to hear this. Here is a HUGE (((HUG))) for you both during this time. I say just love him and spend every minute with him. Hopefully the new drugs Charlene was talking about will help him stay with you longer.

 

[SaddleTrail]

I dont have the vocabulary to tell you how sorry I am for the pain your going through and will continue through in time.

Just remember there are people who will help and we are all here.

Blessings and prayers for all of you.

 

[SampleMM]

TJ, I am also praying for you and your husband. I know you are pretty much alone and I feel for you. I realize you don't personally know me but we have a bond through Lil Beginnings and I want you to know that if you ever want an ear to listen........I would gladly be that person. I sincerely want you to call anytime day or night. My contact information is on my website. Hugs to you.

Debbie

 

[Taylor Jo]

Thank you Debbie so very much when things get so tough I may take you up on that. However, I do have a mini friend that is SOOOOO good to me and she listens to me when I cry. To bad she lives 3 hrs away as I'd be at her door step right now. Things just seem to be going bad to worse. Everyday it's something else and I see him slipping from me.

His BP won't get under control so the primary Dr has ordered a new one finally. He's coughing gunk up from the lung cancer and I asked the pulmonary Dr for something to thin it out so he can get it up better. Today we went to the hosptial for a Doppler test for blood clots cause his feet/legs have swollen up really bad, the Oncologist ordered that and he's already on lasix.

I used to be a nurse but I never dealt with cancer pt's before but I have dealt with lungs before so that's a good thing. He's also got a fever and sore throat, so I got him some antibiotics today.

I asked him if he wanted a wheelchair or one of those chairs that have a seat on them cause he's very week and struggles with shortness of breath. They took his room air and said he's fine at the dr's. Sure he is they ONLY walk him 5 ft. Walk him 25 ft and see how he is you DUMMIES...... tickes me off.

Jill tomorrow we go to a chemo class where we get educated about the chemo. They were going to have us start the 14th but due to the leg swelling we may do it sooner he said. I asked my husband to get a 2nd opionion and he shrugged me off and doesn't want to get one. I'm going to ask his oncologist when we see him next time. I want to know about surgery IF they can do it. No ones mentioned it. ONLY CHEMO. My daughter in law whose a nurse read on the web site your telling me about that if it hasn't metas. that surgery is the first option but my husbands has so thurs the chemo.

They did try to put him on a drug trail but his type of tumor didn't qualify. The Dr said ALL our questions would be answered in this education class and afterwards if we had any questions to call him and he'd speak to us. Also he said that if any family members wanted to talk with them he'd be more then happy to sit down and talk with them or talk on the phone with them either way he was happy to, so that was nice. He's just VERY hard to understand and you have to listen very carefully and I get frustrated cause I want ALL my questions answered NOW. Plus, I want things done NOW. He's a good Dr and I LOVE his nurse she's SUPER. I feel confident in the Dr. it just drives me nuts cause I have to slow down and listen and I want answers fast.

Please from the bottom of my heart I thank you all. Jill I'll go to that web site and look at it. I NEED IT. The Dr's office IS a Oncology clinic there's like 10 Dr's there and a womens clinic for onclogy too, but I don't see any written material laying around anywhere. I'm going to call our local hospital 15 min away and ask them if they have a cancer support group. I just haven't got to it yet being so busy with appt.s it seems like everyday.

I'll let you know how the education class goes. I invited his daughter and she said IF she didn't have to go she'd just as soon stay home with the "children" which are 12, 17 and 15. So I said fine, stay home. I thought it would be good time to spend some time with her dad and get to know more about what he's going through but I was obviously wrong. Everyone has their way of handling things. Her mom died of cancer and I told her she must feel REALLY upset that now her dad has it and she very coldly said NO, it doesn't bother me. I was like "ok."

That's their battle NOT mine. Then in her next breath she say's let me know what day is good we want to come over and visit dad before he starts chemo. I was like "OK"

Strange people.........

Last night I was so exhausted I slept from 9 pm till 8 am this morning it was heavenly. I've been so terrified of going to sleep for fear of waking up and finding him passed away so I haven't been sleeping. I slept out of exhaustion. My Dr. prescribed me some ativan and told me to take 1 mg well last night I didn't take any and I still slept. IT was wonderful.......... TJ

 

[HGFarm]

Oh this brings me to tears........ Folks here are right- do NOT give up, no matter what. Doctors have been known to be wrong, make mistakes and I dont know a single person that has an expiration date written on them anywhere!

The fluid is from the tumors and cancer- we went through this earlier this year- from toes to armpits... I was scared also that it was going to kill him before enough chemo was received. His heart and lungs were being crushed by the fluid.......

I called every cancer place I could think of.... we have a new cancer center here. They refused to help me or even send me literature (!!!) and told me to call the Cancer Society! The Cancer Society sent me a TON of booklets and info and I had it in about two days.

I will pass on to you what Fred did for us before she had to leave us here... She made drastic diet changes and said NO sugar or white flour and little or no 'processed' foods. Yes, shopping is fun because they put sugar in practically EVERYTHING. We use stevia or if we must, splenda. We switched to only fresh veggies and fruit, got fruit juice with no sugar in it (we prefer it) and really had to check the label on everything. We have gone back to the 'old way' of eating- home cooked fresh stuff with no preservatives, etc.... as much as we possibly can. I really feel that the huge diet changes we made helped him a lot. Fred (Linda) thought it had helped her a lot too and helped extend her stay here as well.

Hang in there, and I am so sorry. I hope they get onto things quickly!!!! HUGS TO YOU!!!

 

[Maxi'sMinis]

Saying a prayer to help you to stay strong and lift you both up. Lord bless these good people with a miracle. I will be lighting a candle.