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Chemo & Immunotherapy goes into Overdrive
Battling adenocarcinoma EC with Metastases to spine. Two weeks ago finished palliative radiation for pain ( no effect yet) and today was my third round of chemo. Was a 6 hour session because in addition to folfox ( with one component halved due to it causing significant platelet drop) I began two immunotherapy drugs- keytruda , and Herceptin as well as infusions of benedryl and stearoids which made for a long time on the recliner. The past couple weeks have been the worst due to massive pain ( on 50 mcg/hr fentanyl and 24 mg dilaudid/day) and esophagitis from the 10 radiation sessions causing burning and pain with even reflex swallowing and complete blockage. Add to that I have experienced nausea and extreme fatigue from the chemo. Even so, I have returned to work a few hours a day ( plus long commute) and I’m hoping there are benefits to this that outweigh the difficulties. Certainly true for my mental wellbeing.
I am very optimistic about starting the keytruda and Herceptin because the therapy is now multifaceted and fine- tuned to attack my tumors. Between the treatment going into turbo mode and a lot of prayer ( mine and others praying for me) I believe I’m about to experience quite the turnaround over the next days and weeks. As I write this I’m sipping a soda - something that I couldn’t do for weeks.
So while I have surrendered myself to Jesus and have accepted whatever fate is the will of my Father, I believe in his time and method I will be healed.
I’m hoping to feel strong enough to resume my main recreation which is using a metal detector to find artifacts from colonial times through early 1900’s and then preserving and displaying them throughout my home. It is very good therapy for body and soul. Walking in the woods and experiencing Gods glorious creation brings great peace, and a sense of well being you won’t get on the couch watching TV.
It’s impossible to not get dark thoughts given the nature of this cancer being stage 4 inoperable/ incurable - eating nothing by mouth in 2 months, constant pain, frequent nausea and fatigue, but you have to turn away from the dark thoughts as fast as they come.
If you don’t turn away from the dark thoughts they will weigh down like an anchor and suffering will be inevitable.
The next couple weeks are critical and I will post updates on how it’s going-how my body is responding to the full spectrum of therapy.
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You are something else! How you continue to work I just have no clue. I wish you'd at least stay home to deal with the post treatment misery.
You know I'm praying for you you!
Gary
Oh thanks Gary. I’m on short term disability but I’ve worked at same company (high-tech optical manufacturing) 46 years and I have a skill that others can’t do for high level semiconductor company of great importance. Im working short hours and if needed can be off as needed but doing the best I can out of loyalty. Took today off fearing side effects but I’m feeling better today than any day in past month- suddenly able to drink fluids small amounts and just now a cream of chicken soup so something really great may be happening. Could be the immunotherapy drugs, or the esophagitis ( from radiation) subsiding - but I put my stock on the prayers - my own and from others like you.
I’m staying with my blood type
B+ (be positive, lol)
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2 ReactionsMy husband is experiencing the same. He is on his 8th radiation, 2 days ago started with pain, nausea, fatigue and discomfort eating, still able to swollen soft food.
We hope is temporary and will have good results like you.
Lots of best wishes - and much admiration for your positive view !!
As mentioned by Gary -- do take care and take time off - immune system is lower than norm, and rest is very much needed.
Again - take care!
I think he will have similar results.
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1 ReactionFelt so well I took a ride to stretch of woods that was a municipal dump in the late 1800’s- early 1900’s to look for old bottles and relics. Had fun but after a few times bending to pick something up I felt extreme dizziness so only stayed 30-40 minutes- but was so very worthwhile. Tomorrow the chemo pump is removed and I get a shot of Nyprevia which is to stimulate white blood cell production to make up for losses caused by the chemo. Hoping to continue the improved sense of well being tomorrow and through the weekend and recovering enough swallow ability to enjoy a bowl of soup.
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1 Reaction@rselicmeister, any update? How are you doing?
Thanks for asking, Colleen.
I’m on the rebound from the strong side effects of the Nyvepria and hoping the next week I feel stronger and can do more, until next Friday when I get that shot following my 4th round of chemo. My off week visit with the oncologist showed through my bloodwork that I’m tolerating treatment well, although they cut the oxaliplatin part of the folfox chemo in half because it caused my platelet count to drop too much, but at half dose my platelets remained the same so they will continue at half dose. The esophagitis caused by palliative radiation has largely cleared up and I’m waiting for expedited improvement in ability to swallow at least liquid. Now I can only swallow insignificant amounts and I often have to expel liquid that does not make it into my stomach. My goal is to be able to drink more freely, and soon after soup and “ cream of” soup, and sauté type foods by end of August. My oncologist believes I will see significant improvements by 8th week of treatment ( I’m in 6th week now)
Pain from the metastasis of the spine is still intense and persistent, requiring a 50 mcg fentanyl patch plus 24 mg of dilaudid/ day to barely manage. Weight is 116 and I just switched to a higher calorie enteric formula and need to be more disciplined in getting in what is needed to promote weight gain. This is difficult for me as I become nauseous from ingesting the formula too quickly or at high volume. I suppose more frequent, less volume feeds are the answer which as I said takes greater discipline. As for my mental health, my attitude is upbeat and positive though I do have to work on it. Prayer provides the sustenance that I cannot get by eating food, which I have not done since around Memorial Day. As a Christian, My faith enables me to cope with the grim statistical realities of my disease, although an occasional dark moment will come and I will pray myself out of it. I listen to music that makes me feel happy and much of it is worship music. Although my three adult children and new grandson live 500 miles away near Cleveland, OH, I am in frequent contact with all of them and hope to be well enough for a visit in the near future. It saddens me that my wife has to have the role of carer and hope we can spend more time doing more exciting things than running between doctors. I think she is more depressed over my illness than I am.
Not much more can I add and I look forward to be able to report soon about some solid improvements and that we went out and had dinner together. I believe that day is coming
I don’t recall if you are yourself a patient, or what brings you to the EC forum- please let me know what your experience is, and thanks again for asking me to update my current condition.
relicmeister Stewart
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3 ReactionsKeep at it... what a fighter. Let's hope they stumble upon a cocktail that really works some magic against your EC. I agree... caregivers have it the toughest... I'd always prefer to suffer than to watch my loved one suffer... and feeling so helpless. Love the spirit God has given you! Much love,
Gary
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2 ReactionsPraying all goes well, yes worship and prayer sustains us. God bless.
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