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

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.

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

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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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