Last chemo treatment put me in hospital

A ( perhaps not so) brief update- I have been feeling better every day, able to do more every day. Still on the oxygen, but spending significant amounts of time off it as well, in order to test my capabilities. Having problems getting readings with an old and also brand new pulse oximeter. It just fails to produce any number whatsoever which makes it hard to monitor my progress. May get another new one. My oncology consult tuesday showed good bloodwork and he decided to not do treatment as planned but to let me continue to recover. The results of my echocardiogram were not ready and he has real concern my original adverse reaction and pneumonia may be a manifestation of heart damage brought on by the Herceptin
( not the Keytruda as I thought)

This evening on some light activity I began to have the same coughing and inability to take deep breaths that I had prior to going to the emergency room. I was even using oxygen at the time.

My wife and I are leaving Friday morning to drive from our home in NE Pennsylvania to a town in Western PA where we are spending the weekend with my son, his wife and their 3-1/2 month old son ( my first grandson who I have yet to see in person) they are driving to meet us from Mayfield Ohio - outside of Cleveland.
In spite of needing oxygen and my recent swallowing discomfort for which I have no explanation for I intend to have a pleasant visit. When I first resumed the ability to eat solid foods again, my only issue was chemo nausea and poor appetite. Now it’s more of an irritating pain. My gastroenterologist said it is simply inflamed and raw within my esophagus. Anyway, my contingency plan is………. Stuffed Shells, at the lovely Old fashioned Italian restaurant we enjoyed several years ago when we met to meet my son’s fiancé at the time. And bummer to need the oxygen, but very grateful nonetheless to be at this positive point of my treatment and healing.
Anyway, I’m calling my oncologist Thurs to get the results of my echocardiogram which by now are certainly available. I might ask if another short course of steroid would be wise. Should a medical emergency occur while there, I’m not impressed with the nearby hospital which I looked up the reputation and reviews of.

So, i apologize if I provided “TMI” about this situation, but i do tend to elaborate on the details.

Best wishes and prayers to all
relicmeister (Bob)

Very cool seeing your first grandchild... so happy for you! Our 3 daughters are 33, 36, and 38... none are married... no grandchildren. Our son is 26... he may be our best hope but that could be years away. Just hoping I live that long. Go get em Bob!

Gary

So I’m still home” recovering “ from the pneumonia I got hours after my last chemo treatment. Not much was learned at my oncologist appointment- he was not convinced the treatment was the cause- or if it was, it could well have been the herceptin immunotherapy adversely affecting my heart. At that appointment he did not yet have the results of my echocardiogram taken two days earlier.

At present, my breathing has improved greatly over the past two weeks, but is nowhere near pre pneumonia level. Off oxygen at rest I’m at 91-92 but I start huffing and coughing if I do anything active. I can get around without oxygen if I take it slow. Not sure I could last any time at work this way, but I’m feeling the need to work as they apparently stopped paying me like they have been.
I have a treatment appointment tomorrow but have no idea what he will do treatment wise - he said he would be cautious in light of what happened last time. I’m anxious to find out the results of the last echocardiogram- is the heart affected or not? If it is they will suspend the use of the herceptin. If the heart was affected is it permanent?

Currently, I’m having virtunmnally no symptoms that can be attributed to the EC alone. All symptoms are due to treatment side effects.

Given that and my concerns about income and contraction of work benefits, I feel the need to get back to work ASAP and increase my hours as quickly as possible.

Taking into consideration how successful my treatment has been, but also how disruptive the treatment side effects have become, I’m debating the pros and cons of discussing a slowing -down of treatment to minimize the side effects and enabling me to resume working at near full time level. Or would this be a mistake?
First, I will wait and see what tomorrow brings.
Bob

Bob:
As I've told to you in my past responses, I' ve walked a few miles in your proverbial shoes re disease and treatment side effects and trying remain gainfully employed. I don't know your age or what your job/profession is or whether you're self employed or work for a corporation. I my case, while i attempted to work during the first 2yrs post initial diagnosis and treatments, I found it increasingly difficult to do so. I was fortunate in that my company initially allowed me to take family medical leave, and after that exhausted, I was able to utilize my short term (6 month) corporate disabilty insurance benefits which enabled me to maintain my income. After that was was exhausred, I was able to utilize with my physician's attestation to qualify for long term ( 2 yr) total disability which paid me ~65% of my base salary with continued full medical insurance benefits.

When I suffered my catastrophic Keytruda related adverse events, though it was a difficult decision, I was forced to retire at age 68. I had planned to retire at 70 to maximize my annual SS benefits but it was not to be. I also filed for SS disability benefits but was
denied. This is all too common and you should engage an attorney who specializes in filing/litigating SS the disability income bureacratic BS to help you in your application.

If you haven't already done so you should file for Medicare Parts A&B and begin shoping for a Medicare part F supplement policy. There are a number of legitimate organizations that can help you navigate the numerous offerings avaiable, but there are more than a few that are shameless scams. Choose wisely.

That said, while I know in my case and many others in the same boat, your work is a serious part of your identity and of course your income but at this point in your journey your priorities should now be about living your best quality of life and spending time with family, loved ones and friends.

This isn't a surrender on your part but merely an adaptation to your new reality.

As to your continued cardio-pulmonary issues that may be related to your immunologic treatments with Herceptin, you may want to ask your oncologist about the possible use of one several approved TKI inhibitors such as lapatinib and several others which target HER2 signaling pathways. They can be used with various EC/ESCC chemo dosing regimens with good/ reasonable clinical responses and disease control.

As to your swallowing difficulties, it may be due to inflammation of the esophageal epithelial lining or the development of fibrotic strictures or in some cases, fungal infections with candidiasis as well as tumor recurrence.

Hang in there. Enjoy your new grand baby. I've 2 millenial daughters who are too busy with their careers and having life experiences with travels, hobbies and fur-babies to think about having children. Alas, it looks like I'll never get to experience the joys of having grand children.

Stay strong and carry on!

Dave

David, good to hear from you again. Writing this from hospital as after yesterday’s treatment ( folfox/herceptin) went into respiratory distress so severe my wife took me to the ER where was stabilized with fluids and breathing treatments and steroids, and admitted. I had acute hypotension, and they think this caused veins to dilate and which causes inadequate blood flow to vital organs, hence breathing problems ( along with possible pulmonitis )
Being given fluids, steroids, and prophylactic antibiotics and BP now stable
And doing Ok with breathing at 4 liters oxygen. Awaiting visit from pulmonologist. I showed a physician my oncologist sent your message and he concurred that your suggestions were a viable option.
As for me,I’m 68 and applied and got mySS benefits going at 66 yrs 66 mos which was may level for full benefits which before my illness I thought more useful than waiting 2+ years for max and because while I’ve been at my company for 46 years, there is no pension, and my 401k is small. Before my
Hospitalization i was ready to go to 5 hours a day at work ( which is light
Manufacturing of extreme high- precision optical components-nothing physically difficult). I applied and got short term disability in June but a week after returning to very limited hours at work they started paying me in full,causing me to try to stop the benefits,but they continued until September, and when work HR saw this they stopped paying me so everything is up in the air unless I started to work FT which of course I can’t. I set aside the “overpayments” to send back but they are waiting for HR to send a log of hours worked throughout the benefits period to process that
I value and appreciate your posts and hope to hear from you again soon.

Bob

Bob, I'm sorry to hear that you seemed to have suffered another bout of delayed hypersensitivity reactions to your chemo/immuno-oncology regimens which triggered your ARDS (acute respiratory distress syndrome)

ARDS occurs as a result of the disruption of the alveolar-capillary bronchio-alveolar endothelial barrier that allows inflammation associated protein-rich fluids to enters the alveoli, causing pulmonary edema. This interferes with respiratory gas exchange and reduced blood oxygen saturation which in turn reduces oxygen supply to the organs of your body. With impaired cardiac function i.e reduced pumping ability this lowers systemic flow of low oxygenated blood to your organ systems (heart, lungs, kidneys, liver and brain). The hypo-perfusion of your various organ systems triggers additional hypoxia related degradation of their normal functioning.

Lower blood oxygenation may initially cause your symtoms of breathlessness (dypsnea). As your blood oxygen levels continue to drop, you may will experience "air hunger" or the inability to catch your breath. As mentioned above, continued oxygen desaturation triggers a catastrophic cascade of multi-organ failure i.e ARDS.

The most common clinical disorders associated with the development of ARDS include sepsis, pneumonia, aspiration of gastric contents, delayed medication hypersensitivity reactions, and major trauma.

In your case, based on your description of the time line of the onset of your symptoms, I strongly suspect that you've suffered a delayed hypersensitivity reactions to your chemo/immuno-oncology regimens.

There are a number of recent reports in the clinical literature re the development of ARDS due to patients' delayed hypersensitivity reactions to FOLFOX/FOLFIRI, Herceptin, and Keytruda and other PD- L inhibitors which have triggered episosodes of sub-phenotype 2 ARDS, which is characterized by hyperinflammation and hypotension.

It seems your pulmonolgist has a handle on your case and is providing you with appropriate supportive care which should include appropriate ventilatory support (I assume you've had a respiratory therapist involved in your care team) wide spectrum antibiotics to address your pneumonia and generally, a tapering steroid regimen to tamp down your inflammatory reactions and other interventions to manage your body's fluid balance and diuresis.

I'm sure he is doing so in consultation with your oncologist.

I hope you feel better soon. Regardless of how crappy you may feel, any day above ground beats the alternative.

Dave

wishing you a continued recovery

My husband is goi g through this as well, breathing issues, heart afib, low BP 🙏🏻❤️

Relicmeister, I haven't been active on this site lately, but am thinking about you and wondering how you are doing. I pray for the best.

Sorry to share this but unfortunately my father (Bob, aka relicmeister) passed away at the end of October. Many thanks to the all of the kind people on this forum that shared so much information with him--you all empowered him and gave him hope.