CA125 Over 1900

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Hoping Radiation Therapy Helps

​Hi.  I hope you are well.  

I had Gemcitabine and MVASI Thursday (24th) and ended up in the ER on the 25th.  My new gynonc was able to figure out dosing for both Gemcitabine and Granix, thankfully.  My regimine has required me to take a morphine pill after my Granix on Fridays.  It renders me to bed by 6:00 on Fridays. We changed out Morphine this week to Tramedol because I cannot tolerate morphine side effects. But if I don’t avert bone pain from Granix I end up crawling on floor, unable to walk and my spinal cord feels like it is on fire. My new gynonc has made it possible to get Gemcitabine, which was the only recent chemotherapy that lowered my cancer markers.

FYI:  Gcmcitabine can cause extreme drops in cell counts and platelets.  It can also cause severe kidney problems. It causes severe fatigue. 

This past treatment on the 24th caused me extreme right torso pain and unbelievable nausea, awful taste in mouth, fevers.  It hurt to walk.  I barely made it into the hospital. I was advised by my gynonc to go to ER (I called Friday). 

My gynonc is in Greeley and I get my Granix in Parker.  This is the only way I can get treatments unless I go back to the doctors that provided bad care.  PTSD!!!!!

On Friday I received my very important Granix. The nurse thankfully accessed my power port and they subsequently escorted me into the ED, which was literally down the hall.  I didn’t trust ED to understand all that has happened, which was why I got my granix shot/port access first.  The port allows them to draw labs and administer meds without multiple jabs in into my arm.

I am hoping these details help you understand the complexities of cancer care, especially if things go poorly after a treatment. I wanted them to admit me bit I guess I was not sick enough.  They were kind, that mattered a great deal.

The result of CT scanning and lab work showed severe UTI, large amounts of blood in the urine. They gave one dose of IV antibiotic and some fluids and a Tramedol.  It made very little difference. Sent me home with a blanket and a prescription to pick up.

Saturday my friend Pat picked up my prescription (he is my best friend from church).  My cousin brought food and her visit with me cheered me up.

The past 5 days have been agony.  Today I was instructed to call a service named Dispatch Health to give me fluids, antibiotics and anti-nausea at home.  I have barely eaten and am barely drinking water. My nausea is interfering with my antibiotic plan.  I have meds for nausea but they are not working very well.

Hoping I feel a little better tomorrow.

REASON THIS IS SCARY: I have a bladder dome tumor (mets) that is growing.  This is the tumor that was visible on a scan Feb 2021 but the radiologist missed it. It was there, he MISSED IT. My complaints got squashed. The tumor was noted to have “grown since last scan” in Fed 2022.  I was outraged of course.  Now I am just defeated. I don’t understand why you have to die to take a doctor to court.

Currently the blood in my urine is also sign that bladder dome mets is expanding to other parts of urinary system. It is also a side effect of Gemcitabine.  

I would not be in this boat if the radiologist would have noted the smaller tumor back in 2021.

So please pray that this episode is stricly bad side effect of Gemcitabine and not a sign of increasing bladder cancer. The CT report from the 25th states that my bladder dome tumor is larger than this past May.

I can’t work unless I work from home.  I’m too sick.

Love,

Denise

2023 Gemzar More Than Given In Sept 2020

​My most recent oncologist got upset with me because I asked him (during video appointment) why he gave me more Gemcitabine than I approved.  He claims he cleared it with me on the day of the visit.  I sent multiple messages the days prior to my i fusion requesting a smaller dose, with one saying as low as 250.  Not being a pharmacist I am unaware of how the infusion amount is adjusted to body weight.  I weigh a lot less than in 2020 and my immune system is weaker than in 2020.  He and the pharmacist made an enormous mistake.  You judge, maybe I am wrong. 

1.  Dose ordered on 9/11/2020 was 600 mg/m2 and I ended up in hospital being severely neutropenic and needed a platelet transfusion.  Good result was my CA125 went down significantly.  That is the only reason I kept Gemcitabine as an option, but at their protocol’s reduced rate.  There is a protocol to dose reduce for adverse reactions and I expected my second oncologist to follow that.  He didn’t. 

2.  04/25/23 My second Colorado oncologist, who was supposed to be my safe place (bec other gynonc missed my recurrence in 2021) finally agreed to try Gemcitabine again.  By April 2023 Taxol had not been working and switching to Lymparza only caused me more damage, depleting my bone marrow with even small doses.  

Remember, I had told both oncologists in Colorado that my gynonc in Seattle told me never to take PARP inhibitors because of my weak bone marrow.  Yet these oncs in Colorado pushed and pushed.  Now I am extremely weak. 

The second oncologist and his pharmacist must not have researched my Gemcitabine history.  I begged for small dose in April 2023 from which we could build up, add more, instead of working backwards.  I am invisible and don’t matter.  If I mattered to them they would have listened.  Resuming Gemzar on small doses was part of the treatment plan, second oncologist not even following his plan. 

My second oncologist, on 04/25/23, ordered 750 mg/m2 of Gemcitabine!  I could be wrong, but this is more than what was ordered for 09/11/2023 (600 mg/m2). If the smaller dose on 09/11/2020 put me in the hospital what could possibly be the reason to give me a larger dose of 750 mg/m2 on 04/23/25? Why???????  

If I am wrong, please someone explain…

My second Colorado oncologist never once had a conversation with me about being downgraded to Stage 4B.  I have had horrible cancer care at this teaching hospital.  How is it that my first gynonc misses my recurrence and my second oncologist gives me too much Gemcitabine? The second oncologist and his pharmacist should not be allowed to practice and if I have to move to get better care, they should have to pay the money for it.  I got called names by the second oncologist because I was upset when asking him to justify his dose. I did not use any foul language but he called me beligerant.  He wrote that he owed me no answers….as if he was offended. He caused me serious damage.  I’m deeply depressed and sad.

I feel blank and it is obvious that I don’t matter anymore. It’s hard to face the new days not being able to get simple cancer care free of medical errors.  I am not worthy in their eyes.  I am very depressed. 

Maybe a 3rd gynonc will care. God keeps me here and it truly is only in Him that I find any hope or peace.  

Denise