Wicked Witch

Diabetes > Death

I am VERY curious about LDH levels myself, as I am wondering if the numbers are a good barometer of disease activity. I have read many accounts where people say “My LDH levels were all over the place and told us nothing” or “My LDH levels are super high and I am NED” or conversely “My LDH levels are low and I’m stage 4”.

This is my timeline:

11/01 – LDH 169
11/06 – Surgery to remove large, ulcerated 7mm primary on back of scalp
11/30 – LDH 159
            Pet scan shows activity only in neck lymph nodes
12/19 – Surgery to remove right neck lymph nodes (13 removed, 5 positive)
12/26 – Surgery to remove left neck lymph nodes (38 removed, 0 positive)
01/17 – LDH 220
            1st Opdivo treatment
02/07 – LDH 377
02/14 – LDH 419
            2nd Opdivo treatment
02/19 – LDH 430
            Trip to ER for severe back pain and subsequent scans show progression to brain (18 mets), every single bone in spine (2 compression fractures due to lesions), ribs, lungs, neck, innumerable in spleen and liver, pelvis, abdominal wall
03/03 – Braf/Mek started
03/06/19 and 03/08/19 – Cyberknife for brain mets and radiation to spine in multiple spots
03/13 – LDH 203
03/27 – LDH 188
04/10 – LDH 137
             Scans show majority of spots significantly reduced, some have completely disappeared, and the bone mets are “stable”

I started Braf/Mek in March but was taken off of the Mektovi three weeks later becaue it was harming my heart (lowered my left ventricular ejection fraction). I too was having abdominal pains but at this point I wasn't sure if it was the meds or tumors – I have a set of scans coming up this week so I should be able to tell you more after that.

I am currently only taking the Braftovi, but 4 pills daily as opposed to 6.

I have an appointment with a cardiologist this week as well and if my heart has bounced back they may put me back on the combo at a lowered dose. 

I can tell you I think I'm now suffering from "peripheral neuropathy" – my legs, arms, hands and feet are screaming. I hope they can help me fix this next week. 

I'll let you know what I find out this week. Tell him to hang in there!

I saw all the long sleeve rash guards on Coolibar and Sunsoaked, and boy are they expensive. But a quick Amazon search yeilded some good ones. This is my new beach outfit this year!

Rash guard: https://www.amazon.com/gp/product/B07BKYRDFY/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1&th=1

Swim skirt: https://www.amazon.com/gp/product/B071YSJ7FW/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&psc=1

Long wrap skirt: https://www.amazon.com/gp/product/B01M32I59H/ref=ppx_yo_dt_b_asin_title_o04_s01?ie=UTF8&psc=1

And this AWESOME hat!: https://www.amazon.com/Summer-Elegant-Derby-Floppy-Hat/dp/B06W2KRKMM/ref=sr_1_3?keywords=white%2Bwide%2Bbrim%2Bhat&qid=1553525625&s=apparel&sr=1-3&th=1

Also you are only 4 hours away via the turnpike from UPMC Hillman Cancer Center in Pittsburgh. 

GET A SECOND OPINION.

Ah the eyes . . forgot about the eyes . . The day I started Braf/Mek my eyesight was horribly blurry for about 8 hours after ingesting the Braf (it didn't happen later in the day when I took the 2nd dose of Mek). After about a week, it stopped. They sent me to an opthamologist who looked at me like I was nuts lol. So . . hopefully your hubby won't have eye issues if he hasn't yet!

Okay it's official. Ed Williams is my new hero lol.

– Heather