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

Mom I Need You

​It’s Mother’s Day weekend.  I miss my mom!  Now I am dealing with consequences of 4 bad doctors, men who don’t hear me. The latest just the same as the rheumatology resident, giving me too much medicine.  I told my oncologist I wanted  to start with small dose of Gemzar.  It is even in the protocol.  I literally do NOT understand!

I am emotionally distraught today.  I miss my cat Marilyn.  I miss my Mom. I know God walks with me but today I don’t feel him.  I can’t take the brutal disregard and abuse any more.  I’m struggling.  I should not have been given full dose of Gemzar.  I can’t scream loud enough!

I am only on my second day of going to the outpatient clinic for daily IV antibiotics and my stomach is getting upset.  I’m overwhelmed about trying to juggle daily outpatient visits with work.

After all this I still have to work. That is not right.  I filed a grievance.  ALL the other abuses at the teaching hospital have been ignored. They are supposed to call me Monday. If a doctor can get away with infusing too much chemotherapy then no patient is safe. 

I need my mom!

Daily IV Antibiotics & Chemo On Hold - My VOICE

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I gave a good confession, received Anointing of the sick and holy communion. I am in disbelief and my emotions are all over the place. My heart is broken, once again. My new treatment sanctuary is no longer safe.  There was no reason to receive a high dose of Gemzar, yet it happened. None of it makes any sense to me. Why?

My last resort, Gemzar, had worked in the past but with serious consequences. I was hospitalized because of toxicity in 2020.  It is ok to give Gemzar at a reduced dose when there is a history of toxicity, that is what I asked for and it was even noted in the plan to do Gemzar at a reduced dose. It is written in the medication protocols as to how to reduce the dose when there is a history of toxicity.  Nobody listened. I am invisible. 

I wrote it in messages and it was part of multiple discussions. I needed surgery on May 5, 2023 on my left knee to remove septic tissue. I have been on IV antibiotics since May 3, 2023 and will continue daily IV antibiotics for several weeks. My chemotherapy is on hold until cleared by infectious disease doctor. I literally do not understand why my doctors ignore my requests. Who would have been hurt if I were to have received the 25% or 50% of Gemzar? Not one person other than me if it didn't do any good. 

My experience with Gemzar in September of 2020 showed a remarkable drop in CA125, which is why I had been asking for Gemzar since March of 2022 (after a year of untreated cancer growth). The only problem was the dosing and managing my severe adverse reactions to GSFs (which stimulate the bone marrow to produce WBCs). I ended up receiving a half dose of Granix on May 5, 2023 prior to my knee surgery. ON Saturday my spine was on fire and I was literally howling in pain. I needed morphine. We learned maximum GSF should be 25%, per me, the patient. I want to do more Gemzar at 25-50% because there was a significant drop in CA125 from my infusion on Aril 25, 2023. Maybe if the oncologists actually had cancer they would understood what it means to listen when the patient says no. (this blog post is updated because I felt so betrayed by my doctor that I had to vent. I still feel betrayed but felt it was important to scale down the emotion. How can I trust someone who lies to me?) This blog is my voice, my life and my experiences. When I write about my treatment it is the treatment facts and my experience/feelings related to that. I have a right to tell my story. I am still very hazy from the hospitalization. I don't want to drag anyone down I just want to live.

05/18/23  I am severely depressed because I have to wait another 6 weeks before I can go in a pool, lake or reservoir to swim.  I'm allowed to use a SUP or kayak, but only if I can keep my left knee dry/sealed. Water is my heaven.  I now have stage IV cancer (which was never even discussed with me, I read it in a report) and my oncologist is ruining even the last moments of my life.  Does this happen to other cancer patients or am I the lucky one.  I really am lost. I will hope to have a new oncologist but will have to move. I have no money to do that.  I don't understand.