richnkim
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I can understand why they wouldn’t want to do a liver resection if they thought it was in the lungs too,but I have two radiologists saying two different things so I wish they would do a lung biopsy and find out for sure.
Just my wishful thinking, I should just enjoy the time we have and be thankful for that.
Julie,
Right now Rich’s stomach is killing him he is on prilosec,anti-nausea pills,tums and today his normal dr was gone when he went in for chemo so the physican asst gave him Reglan but when I read the info guide it says you can’t take this drug if you take high blood pressure pills, anti-anxiety med or have diabetes which Rich takes all of these. So I guess I’ll call over there tomorrow and talk to someone, I don’t know why the pharmacy didn’t catch this either.
Rich’s mood is terrible in my opinion, he says he’s just being a “realistic” and I need to face the fact that he might not make it. You can’t believe some of the stuff he has been doing to make sure we are “in good shape” when he’s gone. I don’t think it helps not having a dr who doesn’t think your gonna make either. I’m hoping the warmer weather coming will lift his mood.
He came home from chemo tonight really tried and it doesn’t help that after 5 hours of chemo he goes back to work either. I try to get him to come home on those days but he says he wants to stay normal as long as possible, but his blood work today shows he is getting worn down. He is on day 2 of this round.
Hope your husband does good on his surgery Monday-the nodule isn’t suspicious is it? Hope your feeling better too. The weather has to start getting warmer soon, I’m getting sick of this snow and cold.
Julie,
Thanks for getting back to me. I know that I have seen that Dr. David Zenk at Grand River Group before, even when I pull up all the pictures of the drs there his doesn’t come up.
As for the diabetes it makes me wonder for Rich if that isn’t when all of this started for him 4 years ago. One summer he had a nasel kinda cold all summer long and then he wasn’t feeling good and started throwing up went to the ER and his blood sugars where thru the roof. They put him in IC for 2 weeks trying to get them under control and came back saying that sometimes a virus can make someone type 1 diabetic. Since then he’s been giving himself 4 shots a day intill the last 2 months then all of a sudden low blood sugars. We asked his dr and all he said was cancer works in funny ways. Just makes me think maybe 4 years ago was when this might of started to happened.
Wow! you 3 1/2 hours with the dr at Mayo I think we might of gotten 45 min tops. The first dr who came in was a dr in training who took all the info and then the dr came in and said I agree with drs in Dubuque go home and do the chemo and if you want you can come back up here in 2 months for the scan or have it back there. End of story. We walked out of there thinking it was such a waste of time going there.
Yes it would be nice to get together we will have to figure out between yours and Rich’s chemo days. Rich gets his on Wed so by Fri he feels lousy. It sounds like you feel lousy today. I hope you feel better tomorrow! and thank you for all the info you are a diamond in the rough.
Having problems with my insurance company and using Foundation One they are consinder out of net and they want me to have my Dr do a predetermation request for each procedure code (26) so they can reveiw them which can take up to 2 months. Foundation One said it doesn’t matter to them if they are in net or out of net they will take whatever the insurance company gives them and will not bill the patient, but my insurance company says if I do it without the predetermation request they will deny the whole claim, even after I told them we might not have 2 months to wait for them.
Did e-mail the Dr John Fung at University of Chicago Medicine that Julie was talking about and he said to send him Rich’s med. records and scans and he would look at them, so who knows this Dr is known for his liver surgeries.
Julie if your online what was the name of that Dr in Dubuque you where thinking of seeing? Maybe he would be someone we could use instead of our Dr Doom and Gloom.
So how does Foundation One work? My Dr sends in a tissue sample and then what? What do they send back to my Dr and what does he do with the results? Sorry if I sound stupid, I’m really not that dumb, Rich says his excuse is he has chemo brain, I don’t know what my excuse is but lately my brain can not make a complete thought, I think it’s from a lack of sleep.
I did call Foundation One and they said they take what your insurance pays and thats it they never bill you the rest. I got the procedure codes from them and called my insurance company and I need to get the test preauth. So fun trying to get the Dr to do that much less order the test.
Julie,Lainy and Marions
Thanks for your input, I need all the help I can get!!
The Dr we seen at Mayo was Dr Frank Sinicrope and we did not see a surgeon up there. I was expecting them to run there own tests but they didn’t all they did was blood work and looked at the scans we brought up. The tumor is 6.9 by 5.6 inches and on his liver only it is not around any arteries. They say that is large. They said he can’t have surgey because of the size and because it has gone to his lungs also. But I have one rad. saying that it doesn’t look lung cancer and no one will do a lung biospy to find out because they say what’s the point he’s stage 4 it doesn’t make a difference.Which I don’t understand because all of his blood work is great, liver,kidneys all fine. He is still working a 40 hour work week. I don’t know how he does it but he is still working. The weird thing also is he used to be type 1 diabetic and has not had to take a shot for over a month now. His dr can not explain that one since the steriod they give when you get chemo should raise his blood sugar but it doesn’t.
The Dr we are seeing at MD Anderson when we go down there is Dr Milind Javle and Dr Rachna Shroff. I have not ever talked to them but talked to a onc. nurse April.
Julie who is the Dr in Dubuque that you said is good? Dubuque is when we are going for treatments, we live about 20 min from Dubuque. Cuba City WI is on the boarder of ILL and Iowa. I would love to find a new dr that would give us some hope. So funny Rich is going to Cedar Rapids for work tomorrow. Are dr is at Grand River Medical Group.
As for Rich’s stomach problems we’ve talked to his dr about it and he says it’s a side effect of chemo take the anti-nausea pills. I have him taking something for his constipation and over the counter prilosec, plus he does take his pain pills (hydrocodone) but nothing seems to help his stomach pain. So he can’t really say if it’s stomach or liver pain because it’s kinda all in the same area, if that makes sense.
No the acupunture was for Rich not me his stomach is killing him, he’s taking the anti-nausea drugs but doesn’t seem to help much. So if anyone has any ideas I’m open to them.
I will call Mayo back and see if they will run an entire panel since our Dr. here won’t. I did ask if we could do radiation and was told no because the tumor on his liver was to large and because it had already gone to his lungs.
Heard back from MD Anderson and we are not going there yet because the chemo did shrink some of the tumor they said stay here and continue what we are doing.
Wish I could find someone to talk to about vit and supplements as I do think they would help.
Went to get acupuncture for the nausea and fatigue so we will see if that works.
CT scan results yesterday were not as good as we hoped the Dr said there was a little shrinkage, which I’m a little confused on when the tumor marker blood test showed such a big drop. He said we will the chemo. I asked him about doing the molecular testing and he said no they don’t do that there. I also asked he about putting Rich on such vit. or supplements because his RBC are getting low and he said don’t waste money there are studies showing they really work. So I’m back on the internet finding out what he needs on my own.
Haven’t heard back from MD Anderson yet on what they think on the scan, but Mayo Clinic called and said there blood work came back (I didn’t know they even did this when we where there) and said Rich’s tumor showed mutation SGSR2 and they have a clinical trial right now using Ponatinib which is a pill he would take daily and if he went into the trial he would have to stop chemo. I told them no for now because the chemo is doing some good for him. I will have to see if I can find some info on this mutation SGSR2. I’m sure his Dr won’t give me help.
Thanks Marion we are seeing the Dr tomorrow and I will ask for the molecular testing.
Had the CT scan today and will get the results tomorrow. Also had blood work today which wasn’t to bad the CA19-9 tumor marker test was lower. The first test was 635 and he is now at 350. I thought that sounded good but Dr doom and gloom said all this test is for is to show that the chemo is working, as long as the numbers go down we stay this course if the numbers go up then the chemo isn’t working anymore. Wdhen my husband heard the lower number there was a hint of a smile but that was soon erased.
As for insurance yes we have good insurance it’s Blue Cross Blue Shield. MD Anderson is considerered innet for us. The good about all of this is I used to work for Blue Cross so I know health insurance real well. I’m suppose to call MD Anderson on Thurs. to let them know what the Dr restages my husband at after this scan to see if we stay here to continue chemo or go to Texas and do treatment there. I’m almost ready to just go there no matter what because I think we would have more options. I just hate the thought of both of us so far away from our son.
Yes he had a biopsy of the tumor but no genetic testing done. As for the mets to the lungs one radiologist said it was lung cancer and the other said it looked like granulomas, the Dr said he is going with it being cancer. He said the only way to find out for sure would be to do a biopsy and what would be the reason it would not change anything.
We are just hoping the scan shows shrinkage. Just something to give us a little hope.
We are in such a small rural area that does not offer clinical trials or immunotheraphy and no molecular testing either. The only thing they offered was chemo. When i asked about radiation they said his cancer was too advanced for it.
I thought when we went to Mayo they would of done more testing but they just went off of our Dr’s scans, they did take blood but that was it. We thought they would of come up with a better treatment plan but no the same as back home just chemo.
Everyone says it’s stage 4 just go home and enjoy what time you have left. Well we have a young son at home who still needs his dad and we are willing to fight this, just wish we had the Drs willing to fight with us.
