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.

Sitting In ER Found Out Knee Septic

I saw my oncologist on May 2, 2023 and had told him about fevers. Later in evening my blurry vision was getting worse. AFter 6 or 7 hours in the ER I was transferred to a hospital for IV antibiotic MY ANC has dropped to a dangerous level. During the ER visit my left knee doubled in size. I mistakenly thought it was an arthritic flare. It was a septic knee, had surgery for infection on May 5, 2023. This has been very trying. I appreciate all your kindness.

CA125 Jan 2021 To Feb 2022

I just now received results that my CA125 did go down slightly with Gemzar, so I have to find a way to keep taking it.  I don't even know what that will entail.  I can barely see what I am typing.  I will go to the ER if symptoms get worse but I did not deserve any of this.

This is why I am upset.  I cannot work very easily while on Gemzar, obviously because my labs are in a poor state and the side effects have taken a huge toll on me with just one treatment.  My previous gynonc will never be held accountable, not will the radiology resident. I did NOT deserve to be punished by my previous gynonc for complaining about their error that effected my life expectancy! 

I am exhausted. 

CANCER ANTIGEN 125 - Past Results

About this test

Details

Past Results

Graph of Past Results

From:

To:

- or -

Latest values:

Name Standard Range	Cancer Antigen 125 DXI 0 - 35 U/mL
1/22/21	47
2/19/21	79
2/26/21	82
3/19/21	70
4/9/21	91
4/30/21	92
5/21/21	111
6/18/21	134
6/29/21	148
7/16/21	135
8/6/21	129
8/27/21	157
10/8/21	185
10/29/21	157
11/19/21	183
12/10/21	200
1/7/22	242
2/4/22	255
2/25/22	305

CT Scan Feb 15, 2021 Who Has The Right?

CT  021521 error W CONTRAST - Details

Comments from the Doctor's Office

CT looks pretty clear.

Study Result

Impression

IMPRESSION:

1. No evidence of new metastatic disease within the chest, abdomen, or pelvis.

2. Unchanged nonenlarged para-aortic and portacaval lymph nodes which were mildly FDG avid by comparison PET/CT. No new or enlarging lymph nodes in the abdomen/pelvis.

CONTACT INFORMATION:

If you are a patient and have a question about your radiology report, please discuss it with the provider who ordered this imaging study.

If you are a health care provider and have any questions regarding this or any other Abdominal Radiology report please call: (720) 848-6007. The Abdominal Radiology reading area location is: B-325 AIP2. We are staffed 7 AM - 5 PM Monday through Friday. After hours or on weekends please call (720) 848-8666.

Report E-Signed By: Matt Markese at 2/16/2021 10:48 AM
WSN:PACSREM73205

Narrative

EXAMINATION: CT OF THE CHEST, ABDOMEN, AND PELVIS WITH IV CONTRAST

DATE: 02/15/2021, 1907.

INDICATION: 56 yo F with a PMHx of recurrent ovarian cancer s/p hysterectomy/oophorectomy on chemo, now with rising CA125; please eval disease/METs
Was there a contrast reaction? No
Was there a contrast or saline extravasation? No.

TECHNIQUE: Transaxial images of the chest, abdomen, and pelvis were obtained from the apex of the lungs to the ischial tuberosity according to according to routine chest, abdomen, and pelvis protocol.

CONTRAST: Isovue 370, 85 mL.
IMMEDIATE ADVERSE EVENT: None

COMPARISON: CT of the abdomen and pelvis dated 8/5/2019, PET/CT dated 8/20/2020

FINDINGS:

CHEST:

Thyroid: No thyroid lesions.

Thoracic inlet: No adenopathy.

Mediastinum and hila: The airways are normal. There is no significant mediastinal or hilar lymphadenopathy.

Heart and great vessels: The heart is normal in size. There are no significant coronary artery calcifications. No pericardial effusion. Great vessels are normal.

Lungs, airway, and pleura: No significant pulmonary nodule or infiltrate is noted.

No pleural effusion.

Breasts and axilla: Normal. No adenopathy.

ABDOMEN AND PELVIS:

Liver: The liver appears normal in size, shape, and attenuation with no detectable focal lesion on this exam.

Patent portal veins.

Bile ducts: Unchanged dilation of the common bile duct.

Gallbladder: Surgically absent.

Pancreas: Normal.

Spleen: No splenomegaly.

Adrenals: Normal adrenal glands.

Kidneys, ureters, urinary bladder: Kidneys and ureters appear normal. No hydronephrosis.

Urinary bladder is thin walled and distended.

Reproductive organs: The uterus is surgically absent.

Gastrointestinal tract: Appendix is surgically absent. No obstruction. Contrast is seen in the small bowel.

Mesentery: Normal.

Peritoneum: No free air. No free fluid.

Retroperitoneum: Surgical clips. No significant lymphadenopathy in the abdomen and pelvis. Unchanged 7 mm periaortic lymph node, previously 6 mm (5/121). Unchanged 8 mm precaval lymph node in the porta hepatis (5/100). No newly enlarged lymph nodes are identified.

Vasculature: Mild calcifications of the aortic arch.

Bones and soft tissue: There is mild degenerative change of the spine. No aggressive osseous lesions are identified. Small fat-containing umbilical hernia another fat-containing hernia is seen along the anterior abdominal wall (5/89). There is a 6 mm nodule fat density located along the anterior chest wall, most likely represent fat necrosis (5/31). Stable lytic lesion along the right ilium.

Images

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Component Results

There is no component information for this result.

General Information

Ordered by Kian Behbakht, MD

Collected on 02/16/2021 8:56

Resulted on 02/16/2021 10:48 AM

Result Status: Final result

This test result has been released by an automatic process.

Back to the Test Results page

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CT SCAN FEB 22, 2022 NOTES PREVIOUS BLADDER TUMOR

I was punished for complaining about this.  Steady and regular increases in my CA125 during 2021 noted but no additional scans were ordered.  I was having bladder pain.  No UTIs.  So here I am today again not being heard. My depression is over the top.  It's my record.  I recently was criticized for needing too much control.  Well I need control over scheduling so that I can work.  I have intense fear of medical mistakes...and there is just reason.  My psychologist was recently on Fox31 because the oncology team has launched a virtual psychotherapy service to help patients cope with cancer. What I would give if my only challenge was cancer.  My challenge is not just cancer.  It's doctors making mistakes and ignoring my input.

• CT 020122 reports tumor has GROWth W CONTRAST

• PRIOR STUDY 021521

About this test

Details

Addendum

Signed by Clark, Toshimasa James, MD on 2/22/2022 4:41 PM

ADDENDUM:

 

On the MR 21 days later a right pelvic sidewall node is evident (in addition to the nodule abutting the bladder). In retrospect on this CT from 2/1/22 there is an isoattenuating nodule along the right external iliac vessels in this location, 23 x 13 mm (7/151) and new since 2021. 

 

Report E-Signed By: TOSHIMASA CLARK, MD at 2/22/2022 4:41 PM

WSN:PACSREM73182

Signed by Clark, Toshimasa James, MD on 2/8/2022 3:23 PM

ADDENDUM:

 

Ms. Archuleta requests an addendum for a paraaortic node measurement as one was measured before. Representative left paraaortic node near a clip causing streak artifact is about 8 mm short axis (7/119) from 7 mm before. It may be slightly larger but is still not frankly enlarged, and again this region has artifact.

 

Report E-Signed By: TOSHIMASA CLARK, MD at 2/8/2022 3:23 PM

WSN:PACSREM73182

Study Result

Impression

IMPRESSION:

20 mm apparent nodule atop bladder dome, suspicious for a tumor deposit in this setting. Cystoscopy with EUS may be useful in this setting.

CONTACT INFORMATION:

________________________________________________
This exam was interpreted by a University of Colorado School of Medicine radiology physician. If there are any questions regarding this report or other radiology questions, please feel free to contact a radiologist directly at 720-848-RADS (7237) or if in the UCH hospital or clinics at 8-RADS.

Report E-Signed By: TOSHIMASA CLARK, MD at 2/1/2022 2:42 PM
WSN:PACSREM73182

Narrative

EXAMINATION: CT OF THE CHEST, ABDOMEN, AND PELVIS WITH IV CONTRAST

DATE: 02/01/2022, 1122.

INDICATION: eval for disease, increased ca 125

Was there a contrast reaction? No
Was there a contrast or saline extravasation? No.

TECHNIQUE: Transaxial images of the chest, abdomen, and pelvis were obtained from the apex of the lungs to the ischial tuberosity according to according to routine chest, abdomen, and pelvis protocol.

CONTRAST: Isovue 370, 100 mL.
IMMEDIATE ADVERSE EVENT: None

COMPARISON: 2/15/21

FINDINGS:

CHEST:

Right sided implanted port, tip at cavoatrial junction.

Thyroid: No thyroid lesions.

Thoracic inlet: No adenopathy.

Mediastinum and hila: There is no significant mediastinal or hilar lymphadenopathy.

Heart and great vessels: The heart is normal in size. There are no significant coronary artery calcifications. No pericardial effusion. Great vessels are normal.

Lungs, airway, and pleura: No significant pulmonary nodule or infiltrate is noted.

No pleural effusion.

Breasts and axilla: Bilateral mastectomies. No adenopathy. Stable low attenuation presumed fat necrosis in medial right breast resection bed (7/27).

ABDOMEN AND PELVIS:

Liver: Likely fatty liver, top normal size, but with no detectable focal lesion on this exam.

Patent portal veins.

Bile ducts: Mild common bile duct dilation is presumed due to post-cholecystectomy state given normal bilirubin.

Gallbladder: Surgically absent.

Pancreas: Normal.

Spleen: No splenomegaly

Adrenals: Normal adrenal glands.

Kidneys, ureters, urinary bladder: Kidneys and ureters appear normal. No hydronephrosis.

Urinary bladder is thin walled and distended. 20 x 16 mm nodule atop bladder (7/174) might be a loop of small bowel, but on the prior study oral contrast was given and this didn't enhance (5/172). It was 12 x 12 mm at that time.

Reproductive organs: Uterus is surgically absent. No adnexal masses.

Gastrointestinal tract: Appendix not identified. No pericecal inflammation. No obstruction.

Mesentery: Normal.

Peritoneum: No free air. No free fluid.

Retroperitoneum: No significant lymphadenopathy in the abdomen and pelvis. Stable top normal periportal nodes, nonspecific (e.g. 7/94).

Vasculature: Aorta and IVC appear normal. Retroperitoneal surgical clips noted adjacent to vasculature.

Bones and soft tissue: There is mild degenerative change of the spine.

Images

Component Results

There is no component information for this result.

General Information

Ordered by Kian Behbakht, MD

Collected on 02/01/2022 2:08 PM

Resulted on 02/22/2022 4:41 PM

Result Status: Edited Result - FINAL

This test result has been released by an automatic process.

Back to the Test Results page

Site MapTerms & ConditionsContact UsHigh Contrast ThemeMyChart® licensed from Epic Systems Corporation © 1999 - 2023

Not Heard Again Counts Too Low For Gemzar Today

​I literally have no voice.  The pharmacist had agreed to lower my Gemzar, but they actually didn’t. Somehow I am supposed to be calculating doses “per meter squared” which is why somehow it is my wrror?!!! No! I clearly stated I wanted less than what the oncologist was intending … 25% of standard dose was my original request.  

She talked me into “650”.  I was given “750”.   

My intention was, because I needed a platelet transfusion in the past, to start LOW and work my way up. Sounds reasonable to me. 

I had my Gemzar last Tuesday, I was sick over the weekend but fended off ongoing fevers with Tylenol.  I literally cannot have the “plan” to be ER visits every week. I was avoiding the ER for many reasons but would have gone in if the Tylenol didn’t help.  It is Extremely difficult to isolate the differences between sickness from neutropenia versus side effects of Gemzar.  

My oncologist was patient and counselled me in a more specific way so that I make the righr choices but I literally am not going to agree to live in the ER.  We can do better and I thought that my request to lower my Gemzar even further was a safe alternative.  Appearently my opinion and voice are muted. I am extremely depressed.  

I think people in the oncology field assume patients expect ER visits. They don’t want to think about how to better plan avoiding ER visits, especially for patients like me. I am SINGLE!  I HAVE TO WORK! It is NOT MY FAULT that I have had such crappy medical care!

I have a few good friends but literally no family who can be with me during this time for regular ER visits. 

Why is my voice not heard? 

My burden for just having a place to live is overwhelming me. My rent was raised by $111.00 per month. If I have no apartment I have nowhere to live. Can you imagine me couch surfing or living in my car or transitional housing during chemo?

Does the medical community want me to die?  I love my NEW oncologist.  I really do.  I love the care team, but why??????? How many more little mistakes though? My bone marrow order said I have lung cancer.  I was restaged to grade IVB without Any conversation.  I hate the medical system.  I guarantee you if I were married or had money this would not be happening.  

I don’t want to do hospice in a nursing home, when it comes to that.  In order to reveive HOME hospice I need a HOME.  Can you imagine me finding a “roommate” at this point?  

No Gemzar today, onviously, because all my coumts are low. I have antibiotics now if fever returns.  My previous gynonc should be paying my rent.  He’s the one that let my cancer spread for a year.  My CA125 steadily rose every month for a year and there was a scan showing tumor growth. Then he punished me for complaining about that. I am going to publish my records.  An attorney may not value my life, but at this point I have no choice.  Letting recurrences go untreated while receiving REGULAR gynonc appointments is completely unacceptable.  I need to not have to work right now.

Why aren’t doctors asked to atone for their sins.

I am starting to think that there is literally a demon attacking me.  Nobody listens to me.

I wanted a lower dose of Gemzar last week, was told it was lower, but it wasn’t.  My request was clear, whether I calculated based on body weight or not.I am not a pharmacist, how would I know the difference?  

Very depressed, not feeling like Servivorgirl. 

Over The Years With My Baby Girl

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Trying Gemzar

​Hello friends,

Peace. It’s been a nerve-wracking two weeks. My oncologist will allow me to try Gemzar at a reduced dose. I’ll be receiving bevacizumab during some of the treatment cycles. I pray I get through just one and see a big drop in my CA125.

I’m disappointed that my voice regarding PARP inhibitors was ignored.  My bone marrow is very weak, but praise God there is no sign of MDS or chemo-induced leukemia. If they would have listened and tried Gemzar last February I would have had a stronger bone marrow. If they wouldn’t have MISSED my recurrence we could have attacked my recurrence in 2021. Getting unstuck from the traumas has been hard, but progress is being made.....just in small doses. I need to keep my eyes on God (this last sentence added after confession Sunday before Mass.)

I had a melt-down yesterday because I’m already overwhelmed with too many appointments, a surprise appointment yesterday and realizing I can’t work and do these treatments.  I don’t know how this will work.

I’m receiving EMDR treatments, just getting started. Yesterday I was receiving EMDR while processing the trauma of my mom’s death in 2013.  There was not only trauma from her sudden loss but of course family stuff. It’s common, I think, for families to have differences when a central figure dies. All these things together are overwhelming. I wish healthcare providers better understood PTSD. The entire healthcare system is in a state of trauma.  It’s very sad.  

There are rays of sunshine that peak through the clouds but it’s not looking good right now.

The elephant in the room is my life and I’m trying to sustain myself as I attempt Gemzar.  The only other time I received Gemzar I ended up very sick in the hospital, and required a platelet transfusion.

I will be so happy if it works. But if I end up in the hospital without a significant drop in my CA125 we may need to stop. I don’t know.

I start Gemzar next week.  

Peace,

Denise

Restaged

I saw it in writing, I’m officially downgraded to stage IVB. Sigh. I had a bone marrow biopsy last week and will know more about the results next week. I have hopes to receive some treatments, such as a micro-dose of Gemzar.  My bone marrow is really weak. I trust God and my oncologist, 🙏🏻. 

It is a relief that we are in Easter season.  I must remain focused on Him as much as possible.  I have things I want to do still. 

I feel like the little girl who ran away from home for an afternoon, I just don’t want to be here, I want to be in nature. I miss my loved ones. It’s in God’s hands but I still pray.  

Dear Lord please use my suffering for your good works and divine will. I am sharing a copy of an intercessory prayer to St. Peregrine. Please pray this for anyone with cancer or a serious illness. 

O great St. Peregrine, you have been called "The Mighty," "The Wonder-Worker," because of the numerous miracles which you have obtained from God for those who have had recourse to you.

For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you. 

(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.

Amen.

Happy Easter

​He is Risen!  

Happy Easter

How Great Thou Art

Lynparza Too Toxic… Sigh

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Darny warny woo.  Lynparza too toxic, on hold again.  I see my new oncologist next week. I’m praying we can try to zap my ovarian cancer back with a reduced dose of gemzar. I had gemzar just one time a few years ago but ended up in hospital needing a platelet transfusion.  

Bad memories arise.  Missing a year of treatment because of bad medical surveilance drags on me.  Please pray that I stay focused on my salvation.  I cannot turn back the clock. God’s will is always in charge.  

If it is His will that there are no further options I want to spend some time in an RV seeing the sights.  I want to focus on God, prayer and those whom I love. I desire to serve, help my dad and those I can.  

I dislike pain though, a lot. 😣  Ok, well God is good always. This is another one I love, my friend’s sweetie… Zelda! 

Love, Denise

Lynparza On Hold Again, Sigh

​Hello friends.  My lynparza is on hold again, as of March 7th, because of a low ANC (.3).  Not doing any gsf as of now and will get labs drawn next Tuesday.  Pain still there, my little cross.

I went to confession last night and felt great Joy.  It’s lent, my favorite liturgical season. Today, in contrast, I experienced a few struggles with my environment and work.  Sometimes I just need to be away from people, not a good reflection of my spiritual state, but I have confidence that much of my struggle rests in neurological triggers not yet subdued. 

Whether it’s a noxious smell, rushing or fears of job loss, there is a need for me to complete the upcoming EMDR treatments.  I really want to be alone when I have anxiety (others would pry like me to do that as well… ha). I am praying the EMDR treatments will improve my quality of life.  I have so much to be gateful for and need to remember our struggles can bring grace.

The current inability to stabilize my cancer brings back bad memories of when the radiologist missed the increased cancer activity on my CT scan (Jan 2021).  There is still some “what if” questioning that appears out of nowhere. The only way I can have peace with those medical mishaps is through Christ, but to achieve THAT I need quiet time. I long for a silent retreat. 

Lots of ups and downs.  Thank you for listening to my rambles.  It helps to write it out.  We can’t control what is tossed in our direction.  We can make good choices but sometimes we’re simply overwhelmed.  We react instead of choose.

God is an all loving God who forgives in abundance.  People…. not so much.  Ha.  The lenten lesson that resonates with me this week is “only see Jesus”.  It was hard to do that today. Tomorrow is new. God Bless you.

Thanks, love Denise ❤️

Lynparza Ups And Downs

​Good morning. Feeling unsure but placing all of this in God’s hands. We are in Lent and my inner joy is growing! I’ve been coping with ovarian cancer for over a decade and am very blessed to have been granted this time. I am needed right now by someone and am grateful to God that I can be helpful. Financial stress is huge right now but it’s not eliminating my joy. I still have an apartment, so I’m happy. 

I had to take a break from Lynparza due to neutropenia and anemia. My CA125 creeped up a little and I have more pain. I’m now on a modified dosing schedule and pray I can maintain myself with that. I love my new oncologist.

My prior adverse reaction to a bone marrow stimulant has made me very leary of it’s use but appearantly you can have doses of it when prescribed oral treatments, you just need to hold oral meds on the day of the injection. So intervention with gsf is reserved for emergency only as it caused my RA to flare badly, I don’t know why. Sigh. 

Missing my Marilyn so much! Home feels empty without her.  Thank you for listening.  

Love,

Denise

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Missing My Marilyn

​I cry when I come home, missing my Marilyn.  Thank you Lord for the precious moments offered from you to me and my kitty. Let us also pray for the soul of Tyre Nichols and for his grieving family. Our pets have childlike hearts, if only our hearts stayed sweet. Love and God Bless you.