Maik Jeaunz
Footballguy
best wishes to you, keep fighting!
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My life after the passing of my wife - 6 years later!!! (1 Viewer)
- Thread starter cheeseypoof
- Start date
simsarge
Footballguy
cheeseypoof
Footballguy
Sorry, been a busy day. Thank you for all the support, prayers and well wishes.
First infusion went very well. In and out in about 3-3.5 hours including a office visit with the Dr, blood work and the infusion. The drive there and back took just as long. Lol
I feel good. No noticeable side effects 12 hours later. Actually felt up to going to the boardwalk with my cousin and her family. Little tired now but I really didn’t sleep great last night.
Cheesey
First infusion went very well. In and out in about 3-3.5 hours including a office visit with the Dr, blood work and the infusion. The drive there and back took just as long. Lol
I feel good. No noticeable side effects 12 hours later. Actually felt up to going to the boardwalk with my cousin and her family. Little tired now but I really didn’t sleep great last night.
Cheesey
cheeseypoof
Footballguy
Her name was Alyssa. But she is apparently married to a cop. It was also her last day. She is starting grad school. Lol
In The Zone
Footballguy
Best wishes for you cheeseypoof.
And lots of prayers.
And lots of prayers.
cheeseypoof
Footballguy
Mrs. Rannous
Footballguy
You out there, Cheesy? Any updates?
CurlyNight
Footballguy
cheeseypoof
Footballguy
Thank you!!! I’m feeling good. Tolerating the treatment well.
Had a treatment and doctors appointment to go over the results of my surveillance CT scan and MRI that I had on Monday.
The scans showed the metastatic lung nodules have shrank almost across the board, a couple of them significantly. The one or two that didn’t shrink also didn’t grow.
Going to see a Nephrologist about an elevated protein level in my urine that may be a combination of my type 2 diabetes and a side effect of the treatment/meds.
All in all, it was a big relief and a huge boost to my mood.
CurlyNight
Footballguy
Great to hear! May you continue on your way to complete remission.
Have a Happy Thanksgiving!
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Mrs. Rannous
Footballguy
Fantastic! I'll do the Snoopy happy dance now.
Rattle and Hum
Footballguy
Great news, CP!
jvdesigns2002
Footballguy
This last update was great. Keep up the great work Cheesey. We are all rooting for you and are in your corner!!
Ketamine Dreams
Footballguy
Great to hear Cheesey! We are all here for you. Have a Happy Thanksgiving!
cheeseypoof
Footballguy
Really starting to dislike the end of November/beginning of December for health related stuff. Seem to have hit a slight bump in the road.
My primary doc ordered some testing (blood and urine) beyond what they do at UPenn as part of my Renal Cell Carcinoma treatment. The blood work was ok but the urine test showed a very high albumin/creatinine ratio even though the albumin and creatinine levels were normal. Provided my oncologist the results. He recommended a consultation with a Nephrologist and a 24 hour urine test (pee in a jug for 24 hours). Did the 24 hour test last Sunday and dropped the specimen off at the UPenn lab Monday morning. The Nephrologist appointment was set for late February.
Fast forward to Thursday afternoon. I was sitting at my desk when I received a call from the Nephrologist’s office. They said the oncologist requested that my appointment be moved up to as soon as possible. No other explanation. New appointment is scheduled for Christmas Eve, sooner if there is a cancellation next week. Needless to say I was a bit freaked out by the sudden urgency without explanation. I assumed he got the results of the 24 hour urine test and didn’t like the results. Ugh!
Had my normal office visit and Treatment yesterday. Met with the Oncologist’s LPN (I like her better than him as she is very personable). She went over the results of the urine test. Again very high levels of protein in the urine (124 mg/dL, normal is <=9 mg/dL). She said it’s concerning but not urgent or life threatening. It’s surmised that the elevated protein levels (she called it protein wasting) is a function of the oral chemo meds and my diabetes (type 2 but well controlled with a 5.5 A1c). They took me off the chemo med until after I meet with the nephrologist. She indicated that it’s something that could be managed. They anticipate restarting the chemo med at a lower dose. They don’t want to stop my treatment since it’s being effective in controlling the cancer.
It seems as though the Nephrologist’s office called as soon as the Oncologist’s office called them. The Oncologists Office was going to address the issue at my appointment Friday, not realizing the Nephrologist Office was going to contact me the same day they doctors offices consulted.
Turns out its an issue that needs to be addressed, especially as somebody with one 1 kidney, but it’s not as dire/serious/urgent as my imagination was making it out to be.
Interesting effect. The Chemo pill has a side effect of raising BP. 24 hours after stopping it my BP was 112/66. That’s about 20/10 points lower than it had been running while on the drug. I’m on 2 BP meds to control my BP while taking the chemo drug.
Merry Christmas to me!!! Lol
My primary doc ordered some testing (blood and urine) beyond what they do at UPenn as part of my Renal Cell Carcinoma treatment. The blood work was ok but the urine test showed a very high albumin/creatinine ratio even though the albumin and creatinine levels were normal. Provided my oncologist the results. He recommended a consultation with a Nephrologist and a 24 hour urine test (pee in a jug for 24 hours). Did the 24 hour test last Sunday and dropped the specimen off at the UPenn lab Monday morning. The Nephrologist appointment was set for late February.
Fast forward to Thursday afternoon. I was sitting at my desk when I received a call from the Nephrologist’s office. They said the oncologist requested that my appointment be moved up to as soon as possible. No other explanation. New appointment is scheduled for Christmas Eve, sooner if there is a cancellation next week. Needless to say I was a bit freaked out by the sudden urgency without explanation. I assumed he got the results of the 24 hour urine test and didn’t like the results. Ugh!
Had my normal office visit and Treatment yesterday. Met with the Oncologist’s LPN (I like her better than him as she is very personable). She went over the results of the urine test. Again very high levels of protein in the urine (124 mg/dL, normal is <=9 mg/dL). She said it’s concerning but not urgent or life threatening. It’s surmised that the elevated protein levels (she called it protein wasting) is a function of the oral chemo meds and my diabetes (type 2 but well controlled with a 5.5 A1c). They took me off the chemo med until after I meet with the nephrologist. She indicated that it’s something that could be managed. They anticipate restarting the chemo med at a lower dose. They don’t want to stop my treatment since it’s being effective in controlling the cancer.
It seems as though the Nephrologist’s office called as soon as the Oncologist’s office called them. The Oncologists Office was going to address the issue at my appointment Friday, not realizing the Nephrologist Office was going to contact me the same day they doctors offices consulted.
Turns out its an issue that needs to be addressed, especially as somebody with one 1 kidney, but it’s not as dire/serious/urgent as my imagination was making it out to be.
Interesting effect. The Chemo pill has a side effect of raising BP. 24 hours after stopping it my BP was 112/66. That’s about 20/10 points lower than it had been running while on the drug. I’m on 2 BP meds to control my BP while taking the chemo drug.
Merry Christmas to me!!! Lol
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CurlyNight
Footballguy
Many ts and 
your way. I remember such calls. I would tell myself it's probably not the worst news possible or it would be a call to go to the hospital to be admitted. Hang on to that. Hope you can enjoy time with your son. Wishing you the best! 
xxx
your way. I remember such calls. I would tell myself it's probably not the worst news possible or it would be a call to go to the hospital to be admitted. Hang on to that. Hope you can enjoy time with your son. Wishing you the best! xxx
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Beef Ravioli
Footballguy
cheeseypoof
Footballguy
Thank you. I appreciate your perspective as somebody that’s been in a similar circumstance.Many ts and
I’ll have to try and keep that in mind. Haven’t had the call/situation, yet, so that thought process is foreign to me. I’m trying to stay positive but it’s tough somedays, especially since my natural inclination leans to the negative. Takes a bit to come around to the positive side.
CurlyNight
Footballguy
I understand the negative thoughts. When I was told my tumour was 7 cm and my profile has a poor long term survival outlook, I stopped living for awhile. Some stage 4 online friends got me back up. I have down days especially since my meds keep my brain in a fog and the terrible fatigue but I'm still here taking in what I enjoy with my kid, the furry kind. I do what I like. Or take long naps. It's even more my life now.
Take good care. If you ever want to chat pm me. Xxx
Mrs. Rannous
Footballguy
I figure as long as the doctor isn't calling over other medicos and saying, "You hardly ever see one of these", I'm good.
Merry Christmas to both of you.
Merry Christmas to both of you.
cheeseypoof
Footballguy
True. That’s one of the main reasons I chose UPenn. Figured they’ve seen it all. Plus they have all the different specialties so coordination is simpler. Unfortunately that necessity is coming to fruition. Plus all my history and tests results are available in the system.
I have not tried this nor do I know if it works, but here is a link to a story of a guy who has used panacur c(fendazole) in addition to all the chemo and radiation. It is a dog wormer used since the 80's. https://www.mycancerstory.rocks/single-post/2016/08/22/Shake-up-your-life-how-to-change-your-own-perspective
No research has been done on this because it is off patent but was believed to have anti cancer properties. It can be purchased anywhere and is inexpensive. If I was facing cancer I'd at least look into it. God bless. Hope this helps.
No research has been done on this because it is off patent but was believed to have anti cancer properties. It can be purchased anywhere and is inexpensive. If I was facing cancer I'd at least look into it. God bless. Hope this helps.
CurlyNight
Footballguy
He needs to be careful about taking stuff like this with no research or minimal on it. He's on meds that at the very least the effectiveness can be derailed by popping stuff. Who would have thought having oranges is fine but grapefruit is a no with the chemo I had. If something made a detectable difference for real, it'd be out there on trusted sites and news. There's a ton of snake oil out there.
cheeseypoof
Footballguy
I read the article, though while very interesting, I’m not to that point yet. My current treatment is an oral chemo pill and immunotherapy infusions.
To Date the metastases of the Renal cell carcinoma is isolated to multiple small nodules in the lung. The other usual location of metastases are the liver and thyroid. My latest scans showed no evidence in those locations. Also no lymph nodes are effected.
Now there is is no cure for the RCC, currently, the treatment regime I’m on has shown very positive results. It’s working for me, as most of the nodules are shrinking (and if they aren’t shrinking, they also aren’t growing). If something significantly changes I may be willing to go “off script”, but until then I think I’ll stick to what’s working. I did save the link to that story if I ever need it.
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CurlyNight
Footballguy
I would caution you that if you get there to tell your team. I have seen desperate people go off script and wind up worse off. If I get there I may do clinical trials to help research. That's as off script for me. One guy tying something on the internet of which there is no way to prove this did it for him. Or if anything did. Just be careful.
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cheeseypoof
Footballguy
Agreed. Probably would have to be extremely dire to go down that path. I’m open to aggressive/experimental treatments and/or trials through the UPenn oncology program.
Thats one of the reasons I chose to start treatment as soon as I was able.
Thats one of the reasons I chose to start treatment as soon as I was able.
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Mrs. Rannous
Footballguy
Grapefruit interacts with a ton of stuff. It sucks for Mr R. He loves the kind that eats through the glass, but he can't have it.
cheeseypoof
Footballguy
CurlyNight
Footballguy
Judge Smails
Footballguy
Thinking of you Cheesey. Hang in there GB
CurlyNight
Footballguy
Hope all went well at your Christmas Eve appt, and you are enjoying the holidays! ❤ xxx
cheeseypoof
Footballguy
Merry Christmas. Thanks for asking!!!
It went ok. I really like the Dr. She was very nice. Came off as very caring and competent. Apologized for the mix up over my appoint getting moved up without an explaination. Gave my high five for my treatments beingveffective so far. She didn’t have me fretting about the protein issue. Explained the plan moving forward.
I have another 24hr urine test to do next week. If the protein levels drop below a given threshold I can go back in the Oral daily chemo pill, just at a reduced dosage.
If the protein is still above the threshold she’ll adjust some of my meds, change or add a med to address the issue. She didn’t want to jump directly to that and limit her options moving forward if it didn’t work.
So I’m in a holding pattern until my next appointment/treatment on the 3rd. I need to figure out the most convenient day to do the 24hr test before the 3rd. Want to do it early enough so they have the results for my next appointment.
The more Drs I come in contact at UPenn and the Perelman Center (including while my wife was going through her liver issues) the more confident I am that I’m being treated at the right place. There is a high degree of comfort I’m experiencing.
CurlyNight
Footballguy
And that's so important, loving and trusting your team. My first oncologist was an old dude who used charts. No computer or tablets! He was insensitive. I asked if I'd lose my hair and he rubbed his bald head and said I have hairloss.Merry Christmas. Thanks for asking!!!
It went ok. I really like the Dr. She was very nice. Came off as very caring and competent. Apologized for the mix up over my appoint getting moved up without an explaination. Gave my high five for my treatments beingveffective so far. She didn’t have me fretting about the protein issue. Explained the plan moving forward.
I have another 24hr urine test to do next week. If the protein levels drop below a given threshold I can go back in the Oral daily chemo pill, just at a reduced dosage.
If the protein is still above the threshold she’ll adjust some of my meds, change or add a med to address the issue. She didn’t want to jump directly to that and limit her options moving forward if it didn’t work.
So I’m in a holding pattern until my next appointment/treatment on the 3rd. I need to figure out the most convenient day to do the 24hr test before the 3rd. Want to do it early enough so they have the results for my next appointment.
The more Drs I come in contact at UPenn and the Perelman Center (including while my wife was going through her liver issues) the more confident I am that I’m being treated at the right place. There is a high degree of comfort I’m experiencing.
He only had my biopsy results even though I had mri too. He developed a whole treatment plan based on that. Mri found 2 more cm. He was leaning on the wall next to me so I was twisting my head to see him. That was the first and last visit. I went with a much better onc who is certified and does research as well. Paid cash. Now she's gone into research only. 
Here's to a better and stable 2020 for you. Half the battle is your thinking and a great team! ❤
Mrs. Rannous
Footballguy
I suspect there is no "convenient" time for a 24-hour test.
cheeseypoof
Footballguy
Not really.Mrs. Rannous said:
cheeseypoof
Footballguy
I’m 9 immunotherapy infusions into my treatment and things seem to going ok. All my blood work has looked good. I’m tolerating the infusions very well. In fact, if they are scheduled early enough in the day I go to work after. Had elevated protein levels in my urine in December. A concerning development for somebody with only one kidney.
They suspected it was a function of the oral chemo pills I was taking. Called it protein wasting. The doctor took me off my daily oral chemo pill and retested my urine 3 weeks later. Protein levels were still elevated but dropped to about half the previous result. They restarted my daily oral chemo pill at a lower dose. Interesting effect when I came of the chemo med. I gained about 10-12 pounds in the space of those 3 weeks, although it was around the holidays. Within about 2 weeks of restarting the chemo meds, I lost that same weight. Not a weight loss plan I’d recommend.
I go for blood work, chest CT scan and abdomen/pelvis MRI’s on the 11th in preparation of my next treatment on the 14th.
Overall I generally feel pretty good. Maybe a little more tired than usual. I’m tolerating the combo therapy very well. They LPN that works for my Oncologist is pleased with how well I’m doing, which was encouraging to hear.
They suspected it was a function of the oral chemo pills I was taking. Called it protein wasting. The doctor took me off my daily oral chemo pill and retested my urine 3 weeks later. Protein levels were still elevated but dropped to about half the previous result. They restarted my daily oral chemo pill at a lower dose. Interesting effect when I came of the chemo med. I gained about 10-12 pounds in the space of those 3 weeks, although it was around the holidays. Within about 2 weeks of restarting the chemo meds, I lost that same weight. Not a weight loss plan I’d recommend.
I go for blood work, chest CT scan and abdomen/pelvis MRI’s on the 11th in preparation of my next treatment on the 14th.
Overall I generally feel pretty good. Maybe a little more tired than usual. I’m tolerating the combo therapy very well. They LPN that works for my Oncologist is pleased with how well I’m doing, which was encouraging to hear.
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Mrs. Rannous
Footballguy
Very good news. I'm with you on the wieght loss plan. That sounds just a tad extreme.
Happy Valentine's Day and a belated Happy Groundhog Day.
Happy Valentine's Day and a belated Happy Groundhog Day.
CurlyNight
Footballguy
Awesome! It's amasing how much people can differ in side effects. My chemo wasn't as bad as I expected since everyone had scared me oh oh, they're giving you the red devil? That's what they call adriamycin and it really is red. But the maintenance meds kick my ### energy wise. Most days are an effort to do simple daily things. Most days calls for naps. Memory is iffy which I hate the most. But what can you do. Gotta keep trying and keep going. As we say on the cancer board, I'm in your pocket rooting you on! Xxx
cheeseypoof
Footballguy
Drs visit and treatment today. Get the results of my latest scans.
wikkidpissah
Footballguy
fingers xed
CurlyNight
Footballguy
❤❤❤❤
cheeseypoof
Footballguy
Well mixed bag. Blood work and the scans were good. She was very pleased with the results. 
However, I’m still having an issue with elevated protein levels (protein wasting) in my urine. My nurse practitioner took me off the oral chemo pill temporarily while she, the oncologist (was supposed to see him today but he was at a conference) and the nephrologist can consult and devise a plan of action. They are supposed to get back to me Tuesday or Wednesday.
I try not to complain because overall I’m doing well and generally feel good but it’s mentally exhausting. I feel like a hamster on a wheel.
Thank you all for the continued thoughts, prayers and positive vibes. I truly appreciate it.
However, I’m still having an issue with elevated protein levels (protein wasting) in my urine. My nurse practitioner took me off the oral chemo pill temporarily while she, the oncologist (was supposed to see him today but he was at a conference) and the nephrologist can consult and devise a plan of action. They are supposed to get back to me Tuesday or Wednesday.
I try not to complain because overall I’m doing well and generally feel good but it’s mentally exhausting. I feel like a hamster on a wheel.
Thank you all for the continued thoughts, prayers and positive vibes. I truly appreciate it.
CurlyNight
Footballguy
Glad to hear you're doing well and tests are good!. And it is exhausting when something is off and it takes more time to figure it out. I admire you. I'm not stage 4 yet but if I recur stage 4, I hope to be strong like you. Praying for a plan for next week. Meanwhile, happy valentine's day. May you feel all the love from us and from your loved ones!Well mixed bag. Blood work and the scans were good. She was very pleased with the results.
However, I’m still having an issue with elevated protein levels (protein wasting) in my urine. My nurse practitioner took me off the oral chemo pill temporarily while she, the oncologist (was supposed to see him today but he was at a conference) and the nephrologist can consult and devise a plan of action. They are supposed to get back to me Tuesday or Wednesday.
I try not to complain because overall I’m doing well and generally feel good but it’s mentally exhausting. I feel like a hamster on a wheel.
Thank you all for the continued thoughts, prayers and positive vibes. I truly appreciate it.
❤Xxx
Mrs. Rannous
Footballguy
Right back at you, too. May warm fuzzies come your way.Glad to hear you're doing well and tests are good!. And it is exhausting when something is off and it takes more time to figure it out. I admire you. I'm not stage 4 yet but if I recur stage 4, I hope to be strong like you. Praying for a plan for next week. Meanwhile, happy valentine's day. May you feel all the love from us and from your loved ones!
