My cancer journey

kantuckid · January 15, 2020, 09:23:56 AM

I now wear a straw hat often. I tried a floppy military hat but not enough brim. Hats and headphones don't mix well so I use my motorcycle ear plugs with hats.

Ed_K · September 06, 2020, 11:10:00 AM

In the last few weeks my chemo medicine stop working well enough to keep my IgG Kappa numbers in check. Also I was informed by the Dr. that was treating me that he no longer will be treating my type of cancer, and referred me to a real Multiple Myeloma specialist. I had an appointment with this new Dr. as a get to know you meeting. Now I'm waiting to have a pet scan and when the numbers come in we'll have another meeting to decide what the new medicine's will be to knock the cancer back down to some what normal numbers. I would like to get to where I can work some without getting tired after 3-4 hrs of working.

TimGA · September 06, 2020, 10:00:24 PM

Mr. Ed,
Hope new Doc works out well, pray your endurance will get better. I have been following your journey,
just wanted to say you are a great inspiration.
Tim

mike_belben · September 07, 2020, 01:24:43 AM

Ed i never saw this thread before. It pains me deeply to read of losing your boy.. By far my greatest fear. Ive asked the Lord to move this mountain for you and bring peace and healing in Jesus' name.

thecfarm · September 07, 2020, 06:15:35 AM

I hope things will get better for you!!
I will be thinking of you.

samandothers · September 07, 2020, 09:06:55 AM

Sorry you must go through the change in Doc and medicine. I hope thinks get on a better heading soon and your stamina improves.

Ed_K · September 07, 2020, 09:22:42 AM

Hi all, thanks for checking in and the prayer's. Hope y'all have a great day.

DbltreeBelgians · September 07, 2020, 03:49:55 PM

Thoughts and prayers for you Ed.

Brent

Walnut Beast · September 07, 2020, 04:41:40 PM

Hang in there Ed

Bruno of NH · September 07, 2020, 10:04:29 PM

Ed,
You are one tough customer.
The new Dr will figure out a new plan.
Prayers sent.
Bruno

Weekend_Sawyer · September 08, 2020, 06:30:16 AM

Change can be good Ed.
I'm hoping well be hearing from you for a long time to come.

Jon

Bricklayer51 · September 08, 2020, 01:10:53 PM

good to see you hanging in there ed i go for 11th round of chemo tomorrow getting hard to do the things i like but being bullheaded i went up the ladder put a line in a big cedar got it over with a comealong and my quad got 3 logs got to be happy for every day no matter how bad we feel

Bricklayer51 · September 12, 2020, 07:42:56 AM

ed something happened to the e mail so i will answer here now i know how bad chemo can make you feel i admire how you keep going mine is from my service in vietnam 5 years ago prostrate the first of this year lung spine and brain their going to try and keep me around with chemo every 3 weeks

mike_belben · September 12, 2020, 07:46:09 AM

Thanks for your sacrifice bricklayer. The Belben's all appreciate it.

Ed_K · September 12, 2020, 09:29:20 AM

Thanks Bricklayer51, I wonder if the meyloma was from agent orange as I did work on the side of the runway that the spray planes used. We built the rubber bands that stop the jets ( can't think of the correct name) same as you see on aircraft carriers. I think the dirt may have had excess drips from the planes. Any way I had fun doing it.

Bruno of NH · October 02, 2020, 06:56:31 PM

Thank you both for your service Sir's

Ed_K · October 10, 2020, 08:08:20 AM

Oct 2020, update I did the pet scan and there's bright dots everywhere the Myeloma is back with a vengeance. The new Dr. has decided to go with a 3 drug combo to try an kill the cancer cells.It will consist of a drug Daratumumab with Dexamethazone added to the iv at the beginning. There's a pill that goes with it Pomalyst which I will take for 21 days on 7 off. In the beginning the treatment will be once a week for 8 weeks, then twice a week for 16 weeks, there after once a month.
I had the first infusion on Oct 6, and 5 mins in got a reaction that started to swell my throat up.Couple of counter drugs were injected into the iv line,an 35 mins later we're going again. Because I failed this first infusion I have to do the second one the same way. After this if I pass I will ask for a different way of treatment where they inject the iv drugs into my stomach over a 5 min period. The reason for this is the iv way takes up to 8 hrs for the first few times then at least 4 hrs for the rest, where the shot and wait time is an hr at most. I don't want to be there any longer than I need to be ;).

samandothers · October 10, 2020, 09:04:29 AM

Sorry to hear this news. I hope the ease of the treatments improve and you respond well to them. You continue to be in my prayers.

WDH · October 11, 2020, 07:08:56 AM

Pulling for you, Ed. I know the treatment is rough, but you can do it.

thecfarm · October 11, 2020, 07:24:04 AM

Vengeance is not a word I like to hear coming from you. :(
I will be thinking of you.
Good luck with the treatments.

Magicman · October 11, 2020, 07:30:46 AM

Ed, I wish you the very best during this latest journey and fight against Myeloma. My Prayers are with you.

Weekend_Sawyer · October 12, 2020, 07:27:12 AM

Ed,

I'm pulling for you, don't hesitate to reach out anytime.

Jon

Chuck White · October 12, 2020, 09:03:23 AM

We're all pulling for you Ed!

I've been arguing/fighting with the V.A. over the last 3-4 years and finally convinced them that even though I served in Thailand, I did receive my Viet Nam Service medal.

I had been reading that it is the general consensus that anyone who served in the Viet Nam theater of operations has been deemed to have been exposed to Agent Orange.

Two years ago the V.A. sent me a message for an appointment with a neutral doctor, they did practically everything at that appointment and determined that I had Ishimick Heart disease and limited range of motion in both shoulders and both knees and both hips, all caused by exposure to Agent Orange!

That raised my disability rating to 70%, now my left hip and knee are nearing replacement condition!

So, my suggestion to any Viet Nam Veteran is to stay in tight contact with the Veterans Administration!

All of this is the reason why I'm slowly getting away from sawmilling!

Ed_K · October 12, 2020, 10:04:05 AM

Thanks everyone, @Chuck White I always figured if we were good enough to haul 5k gallons water 3 time a day to 7200 refugee's we should have been included in the nam effort. I was in the dirt a lot at Utapao, one time I even shut down the whole flight line when I dug up their power cord 4160 v ;D.

Chuck White · October 12, 2020, 03:00:43 PM

I was an Aircraft Mechanic at Nakhon Phanom (NKP) from Apr '69-'70, working on the A-26 planes which flew bombing missions over the Ho Chi Minh trail!
If you haven't been bugging the VA, I suggest you do so, it made a big difference in my finances, tax exempt!

Wishing you well, my friend.
Chuck