aticon

Hi everyone — just thought I’d give another update on my mom’s condition, since I haven’t posted in awhile.

Chemo regimen of FOLFOX continues. She tolerates it reasonably well, but it makes her very cold and very fatigued. A walk around the block with the dog zaps all her energy reserves. With every other chemo infusion she requires a 10% strength reduction because of low hemoglobin, and she has had 1 blood transfusion due to low levels. My sister (blood type match) has begun banking blood. Mom has begun losing her hair; not in chunks, but it’s very thin now in comparison to her norm. Her doctor gave her a prescription for a human hair wig (couple thousand dollars! yikes!). I’m planning to get it for her birthday. Due to almost constant digestive distress, she’s on a completely vegan and gluten free diet now (no meat, dairy, soy, or gluten) and she juices regularly. Weight appears low to me (she was already very thin to begin with), but does not appear visually jaundiced or yellow, so that’s reassuring.

At this time the most apparent “symptom” is really her ever-increasing abdomen. Fearing this was ascites (fluid build-up) which would need to be drained, and which would be symptomatic of the early stages of organ failure, she received scans to determine how much fluid existed. These scans showed that there’s virtually *no* fluid, but it’s instead her extrahepatic tumor that has grown to 10cm in diameter (larger than an adult fist; about the side of a grapefruit) and is causing her belly to protrude. On her already slight frame, this makes her appear about 4 months pregnant. About a month ago, the weight of the tumor caused her stomach to collapse. As a result, she no longer feels hunger pangs, and needs to remember to eat at traditional times. She also gets full very quickly since her stomach is so compressed by the tumor.

So the question became, what to do about this tumor? It’s huge and growing. Her interventional radiologist suggested a procedure called Y90. This is apparently a liver cancer therapy that consists of millions of small glass beads containing radioactive yttrium-90 being injected through a catheter into sites that are immediately local to tumor growth. The beads emit localized radiation, which is more effective and more targeted than low-dose external radiation therapy. The beads kill the tumor tissue, while preserving the healthy liver tissue. It’s pretty genius, really.

The last couple of months have been spent battling with the insurance company over coverage denials for the essential Y-90 treatment that was recommended by her medical team (interventional radiologists, nuclear medicine, primary oncologist, etc.). Talk about stress! At long last (and on the 3rd and final appeal attempt!) she was finally approved for the Y90 treatment (hooray!). Preparation required her to be off chemo for at least 4 weeks leading up to the treatment date. During this time she had various tests and scans to “map” the blood vessel pathway which the millions of small glass beads containing radioactive yttrium-90 would be injected into. Blood vessels leading to her pancreas and stomach were cauterized to prevent the beads from traveling there. A “dress rehearsal” procedure was done 2 weeks ago where, after many hours of blood vessel mapping, beads containing contrasting dye were injected along the pre-determined pathways and deposited near the intended tumor sites. She was then scanned to see if the beads were positioned properly and where they needed to be. Everything looked correct, so the “real” procedure was scheduled for 11/14 (last Thursday). It was a success! The medical team advised that the procedure went “text book” well, and they positioned the radioactive beads exactly where they intended to. This is an outpatient procedure, and pain was managed with Versed. Soreness from the catheterization (entry is up through the main artery in the leg/groin area) lasts for about 2 weeks, so she’s still quite sore, but has already observed belly size reduction due to the necrosis of the tumor tissue. This is of course wonderful news; the treatment appears to be working so far. The tumor tissue is supposed to continue dying off over the next few months, and she’ll be scheduled for resection surgery around February. (She was determined to be unresectable a few months ago, so this is truly meaningful progress).

Another update: the results of her genetic sequencing report indicate that she has NO abnormalities among the current ‘known’ mutation pathways. However, she’s still going to be tested for Lynch Syndrome to rule out a genetic predisposition to colorectal and/or GI cancers, given her father’s diagnosis of colon cancer at age 57 which brought about his death at age 59 1/2 (his had mets to liver and lung). Will advise more on that once the results are in.

I held a fundraiser at work and we raised $2,500 for The Cholangiocarcinoma Foundation, which was great for bringing awareness to bile duct cancer. The mother of one of my colleagues was also recently diagnosed with this very disease, which certainly seems to suggest that incidences are rising.

My mother’s attitude remains resolute, happy, positive, upbeat, grateful, thankful, calm, and hopeful. If attitude is everything, she’s nailing it!

Will post again once I have more to say; this about brings everything current with my family’s situation.

Hang in there, everyone!

Hi all ~ haven’t posted since my original, and there are some updates to share about my Mom.

After recovery from neurosurgery to remove the diseased C4 vertebrae (bone/spine has been her primary metastasis from CC), 10 rounds of daily radiation targeted on the C4 region was completed. Side effects were minimal, just some moderate nausea that was easily controlled with Zofran, and a mild sore throat (frontal region of the C4 treatment site).

Then chemo began (Gem/Cis) – suggested regimen was 6 cycles initially, and Mom made it through 5 before electing not to complete the 6th. Side effects included daily, constant nausea which Zofran didn’t help with a bit; inability to keep food down resulting in weight loss; no appetite; GI distress; abdominal tenderness; body aches and flu-like symptoms; sleeping difficulties; vein pain which prompted the installation of a collarbone port; numbness in left toes/ball of foot and calf; etc. Nonetheless, her attitude has been steadfastly positive and upbeat — and remains so.

On Monday, 7/8 she had the first round of follow-up tests (xrays, PET scan, etc. etc.) since diagnosis 3/21, spinal surgery 4/5, radiation 4/25-5/7, and first cycle of Gem/Cis chemo (5/13-6/28). We all had high hopes for improvement, but results conveyed in appointment 7/9 with primary biliary oncologist showed a “mixed bag”. Generally, new lesions or an increase in size. Several have decreased in size or stayed the same. Continued mets to spine showed several that need immediate attention (L7, L10, L11, Sacrum, Sternum, Thoracic areas, etc.). One is pressing on the spinal chord. New symptoms include upper back skeletal pain, difficulty rising/getting out of bed, pain when turning/twisting from the waist. Gem/Cis was doing something, but barely. Suggested switch to either [1] palliative care, or [2] different chemo regimen (FOLFOX). She’s a fighter and is not in the mindset of palliative care at this time, so we’re switching to FOLFOX and setting up a new chemo regimen. Appointment with radiation oncologist 7/10 included new tattoos/setup to begin new (second) round of radiation today (7/11). Will include 15 cycles, with simultaneous chemo.

Radiation oncologist is at St. John’s (Santa Monica). Primary oncologist is at UCLA, who referred her to the Norris Cancer Center at USC since he’s limited only to UCLA programs. Met with a doctor there this morning to look at her case and see what he thinks. Will report back.

Thanks for ongoing interest and concern.