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cheeseypoof

My life after the passing of my wife - Cancer treatments bump in the road

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Sometimes my life seems like the fight against Clubber Lang in Rocky 3.  I get my ### kicked early but stumbles through then wins in the end.

The phrase: “You ain’t so bad” is rattling around by brain!  Lol

 

https://youtu.be/I7krz_Krn4k

Edited by cheeseypoof
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Ts & Ps. So sorry you're going through it again. I feel the fear. Hope the treatments put you in remission for life. Keep us posted. Xxx

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49 minutes ago, cheeseypoof said:

Sometimes my life seems like the fight against Clubber Lang in Rocky 3.  I get my ### kicked early but stumbles through then wins in the end.

The phrase: “You ain’t so bad” is rattling around by brain!  Lol

 

https://youtu.be/I7krz_Krn4k

Think of yourself as a role model because you are. Once I got past my diagnosis 4 years ago, I found just how many people were looking at me and others like me who seemed to cope well. Even though I am 4 years out, I still help people facing this scary disease by showing strength and hope. I also share fears as they come up but always leave the person with a positive, which helps me as well. If I ever get rid of some of my side effects which includes terrible fatigue, I'd love to volunteer as a support person.

Edited by CurlyNight
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Thoughts and prayers. Fight the good fight. Hopefully you will find a cute nurse or two in your infusions and it will be a bit more tolerable 

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7 hours ago, cheeseypoof said:

the Abramson Cancer Center in the Perelman Center for Advanced Medicine at the Hospital of the University of Pennsylvania.

For no known reason, this made me think of this song.  I have issues.

Best of luck.

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15 hours ago, cheeseypoof said:

 Abramson Cancer Center in the Perelman Center for Advanced Medicine at the Hospital of the University of Pennsylvania

Who's your oncologist?

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Any chance that this is not metastatic disease? Can a biopsy be collected at a future date? Several things can present as small lung nodules.

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3 hours ago, Tom Skerritt said:

Any chance that this is not metastatic disease? Can a biopsy be collected at a future date? Several things can present as small lung nodules.

A slight chance, but unlikely.  Based upon the stage and grade when the cancer was discovered (stage 3/grade 3, with infiltration of the tumor into the IVC) metastaces was the ultimate outcome.  Also due to the quickness that this particular spot/nodule appeared (not there to 6mm in 4 months) makes it highly suspicious.  The other nodules present are static or have only grown slightly in the past almost 2 years.

Too small to biopsy.  Needs to be 1cm at least in order to be able to needle biopsy.

Edited by cheeseypoof

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Good luck Cheesy. Kick cancers ###.

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Wife just celebrated 5 years cancer free, we’re literally on the beach right now 

 

you’ve got this 

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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

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On 8/8/2019 at 11:57 PM, simsarge said:

Thoughts and prayers. Fight the good fight. Hopefully you will find a cute nurse or two in your infusions and it will be a bit more tolerable 

Her name was Alyssa.  But she is apparently married to a cop.  It was also her last day.  She is starting grad school.  Lol

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On 8/9/2019 at 8:23 PM, cheeseypoof said:

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

Hopefully things are going well and you're not having bad side effects.  Xxx

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56 minutes ago, CurlyNight said:

Hopefully things are going well and you're not having bad side effects.  Xxx

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.

 

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Be well cheeseypoof. Prayers and best wishes for your speedy recovery and return to great health.

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Timely to be thankful for positive news. Keep strong & prayers continue from here.

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4 hours ago, cheeseypoof said:

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.

 

Great to hear! May you continue on your way to complete remission.

Have a Happy Thanksgiving! 🥂

Edited by CurlyNight
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This last update was great. Keep up the great work Cheesey.  We are all rooting for you and are in your corner!! 

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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

Edited by cheeseypoof
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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

Edited by CurlyNight
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6 minutes ago, CurlyNight said:

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

Thank you.  I appreciate your perspective as somebody that’s been in a similar circumstance.

 

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.

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12 minutes ago, cheeseypoof said:

Thank you.  I appreciate your perspective as somebody that’s been in a similar circumstance.

 

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.

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

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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.

 

 

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30 minutes ago, Mrs. Rannous said:

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.

 

 

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.

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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.

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28 minutes ago, zeamax said:

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.

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.

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17 minutes ago, CurlyNight said:

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.

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.

Edited by cheeseypoof

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16 minutes ago, cheeseypoof said:

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.

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.

Edited by CurlyNight
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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.

Edited by cheeseypoof
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On 12/14/2019 at 3:36 PM, cheeseypoof said:

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

Hope all went well at your Christmas Eve appt, and you are enjoying the holidays! ❤ xxx

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1 hour ago, CurlyNight said:

Hope all went well at your Christmas Eve appt, and you are enjoying the holidays! ❤ xxx

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.

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