Doxil, what can you tell me about this chemo treatment?

Tumor Flare? After my 1st Doxil infusion, my Antigen number went down by 50 percent. After my 2nd infusion, it nearly doubled, almost back to the same number as before the 1st infusion. I saw my NP and she knows I have my doubts about even using TM for a lot of reasons, including research that's concluded the same thing: The one thing TMs reliably do is cause patients stress. But my MO puts a lot of faith in their ability to detect trends.

Thoughts?

Batfax,

I didn't do WBR. I did a limited series (5) on my lower back. They extended the Doxil "off" portion to four weeks, radiated me, then waited one week to start Doxil up again.

I imagine it might be different for WBR, due to the blood brain barrier. Some chemos sneak past the BBB, but I don't know about Doxil.

I do know that I loved the infusion schedule. Only two or three chemo crash days a month!

Jennifer

I saw my oncologist today and she is taking me off Doxil due to my blisters and other skin issues. I am disappointed because my scan showed that it was working but I know I can’t live with not being able to walk due to non healing blisters like I’ve been for the past 8 + weeks. The doctor I saw at the advanced wound treatment center last week told me he was going to call her as he did not feel comfortable with me getting any more doses. The blisters do seem to have gotten better since holding off on my treatment last week.

My MO’s recommendation for my next Chemo is Gemzar, however we are going to hold off starting it because I have a second opinion scheduled at University of California, San Francisco on January 9th and we don’t want to start something that could change based on their recommendation. She is hoping they may have a trial option for me. I’ll post what they recommend after the appointment.

Regarding tumor markers, mine have gone up steadily since starting my 4 Doxil treatments even though my scan showed a reduction in the visible lesions.

Whatever feedback's out there, I need it.

My MO tests tumor markers with Antigen-125. Here are 4 months of results:

Month 1: 230
Month 2: 118
Month 3: 192
Month 4: 496.

Month 4 was done last week.

My Absolute Monocyte and Neutrophil counts also are much higher than previously. Other significant changes include: Eosinophil, Imm Granulocyte, Lymphocyte, MCV, Monocyte, Neutrophil, PLT, RDW, WBC Count, Alkaline Phosphatase (nearly doubled), ALT, Anion Gap, AST, CO2, Creatinine, Glucose, Protein and Urea Nitrogen.

Most have been stable throughout this crazy adventure, including radiation, other chemos and having untreated mets.

That's 22 values with significant changes. An important one that's still normal is liver function.

Am I alive? Is this the afterlife? If so, frankly, it sucks.

Asking my team about all of these changes would be pointless. I tried asking if it was relevant that my still having a menstrual cycle and the only month when I didn't have my period at the same time as my infusion/blood work was the same month as my lowest Antigen number. A bunch of wacky websites like nih.gov say menstruation can artificially raise Antigen-125 levels. The reply told me to get my scans and they'll be in touch. And they get very concerned when cancer level numbers raise. (sic) … THEY get very concerned?

I wonder if the lab tech's inability to draw blood from my port – a first anywhere – and the 30 minutes spent trying to before going to a vein and slapping RUSH JOB stickers on the vials, may have had any effect on the results?

I did in-home hospice for 4 months before trying Doxil. I felt miserable. I blew up like a balloon from inflamed lymph nodes from the abdomen to the chest. I hurt everywhere and my skin became hypersensitive in the node/tumor zone. Lying naked in bed all day is overrated.

Right now, none of that is happening.

I was told to get a CT scan and a bone scan. I need to get my physician's staff to get my new health insurance company to pre-authorize for out-of-network procedures before I can schedule anything. Having numerous orthopedic problems means a bone scan could be worthless and possibly counterproductive. I need to consult my orthopedic specialist on that since I don't know enough. The MO keeps writing off degenerative disc disorder (my lower spine is collapsing in on itself); joint disorder of the hip (if I live another 5 years, I'll need a replacement); etc. It's like, even where I live, they don't hand out handicap parking permits like candy.

I'm so frustrated. My first two cycles were hard. My third wasn't easy. So far, my fourth isn't doing much re: SE but the stress and unanswered questions are driving me nuts.

Yet, I still feel better overall.

Purgatory???

Thanks, Stefanie. It's too easy to feel alone in this. Did you get to Australia for the holidays? I hope so.

I like your pic and location. The beach is my favorite place. I'm partial to fresh water tho. This time of year, local beaches are wrapped in sand fences to keep as much sand from migrating as possible. In normal winters, ice would start building up along the shoreline of Lake Michigan and inland lakes would be freezing over. I need to take a drive by one of my favorite beaches soon, maybe go for a walk.

I hope there's a PET cancellation soon for you. My MO didn't want a PET; said multiple CT scans and a bone scan, which uses nuclear reactive material, are cheaper.

OT question: I saw in your sig that you have implants. Have they been a problem? I'm actually scheduled to see my plastic surgeon this week about finally swapping in implants. My MO is still on board with what was his suggestion - putting a swap back on the table and moving forward with it. I've had saline expanders since July 2017, so I'd like to swap. But it seems strange to be saying my cancer could be out of control and go get your implants too. I'm approaching the PS appointment with such emotional caution now. Like, the whole surgery could get put on the back burner again. My opinion is that hope is a wonderful thing unless it's false hope. That's worse than no hope.

I'm reading posts, too.

hair loss from Doxil? This stuff is apparently working great for me (late Jan. Scans said so) but I’ve lost a good bit of hair on the crown near the back of my head. Yikes, it’s creepy. I’ve got decent hair along face but very little in the upper back.

Any remedies for this annoying problem? I hate to complain