Please allow me to share my dear father’s Melanoma journey :*(

My father’s original diagnosis was from a “mole” on left/side/flank/back that had acted up and was scabby/bleeding in late fall of 2016. *My mother and father vehemently went to the skin doctor every six months* however, this either was missed or it just developed “that fast ….”

In late fall of 2016 after diagnosis came back from the mole as Melanoma – we proceeded with a Sentinel lymph node biopsy and sadly – that was *positive* – resulting in our initial staging as “Stage 3C”. In early January of 2017 we proceeded with a Wide Excision Surgery (under his left armpit) – with complete lymph node resection. ALL those lymph nodes were CLEAR. We felt that was wonderful news. *However* our oncologist told us that it was not a question of “if” – but “when” we would progress to Stage 4 (due to the nature of Melanoma and the fact it had already made it to the sentinel lymph nodes). The oncologist felt that instead of beginning any sort of treatment – we would Watch/Wait with scans throughout 2017 every few months. ***At THIS point in our journey – the option that COULD have been offered was straight single agent of immunotherapy – Ipilumimab (Yervoy) BUT due to my dad’s age (at the time 69) and the fact he had other things going on (IgA Nephrophathy (kidney disease), CML (chronic myelogenous leukemia), atrial fibrillation (heart), diabetes (adult onset) that is why the doctor felt the “watch/wait/scan” scenario was our best move. (Looking back – all I can say is we followed our doctor and did the best we could) – we all know the “potential” side effects that immunotherapy can cause – so I cannot fault the doctor in wanting to “watch/wait/scan.”

We made it through 2017 without any issues and doing scans etc., however, in early 2018 our scans picked up metastisis to lungs and abdominal lymph nodes. We now reached a diagnosis of Stage 4. It was at this time – we had no choice but to proceed with treatment and we began Immunotherapy – however instead of as originally potentially suggested in 2017 (Ipilumimab (Yervoy) – our doctor began treatment with Pembrolizumab (Keytruda). My father showed a very favorable response for almost a year (10 months). Along the way we had a *rogue* mass removed from just under skin area on chest due to not responding to the Keytruda – and that was verified to be Metastatic Melanoma.

Early in 2019 we had progression in abdominal lymph nodes and lung nodules. It was at this time (Spring of 2019) that we began double Immunotherapy (4 Cycles of Ipilumimab ((Yervoy)) and Nivolumab ((Opdivo)), followed by continuation on Nivolumab ((Opdivo)) as a single agent for almost another year showing good response.

Early in 2020 sadly we had progression which now included a “tumor” (small bowel wall thickening) – and this was **never** biopsied but the oncologist felt it was nothing *new* cancer wise (ie new adenocarcinoma or lymphoma) – but that it was metastisis of Melanoma to and within the small bowel. **MY DAD WAS BRAF GENE POSITIVE** so we moved from the “immunotherapy” world and began the “targeted” therapy world with Braftovi and Mektovi (pills) for almost nine months initially showing good response from the small bowel tumor ‘shrinking.’

Early in 2021 sadly we had progression of the tumor / cancer within the small bowel. Our oncologist felt that we were now “out of options.” The only thing left was radiation and chemotherapy (which we all know traditionally does NOT work) – but we had hopes. Hopes that maybe due to a history of being on immunotherapy and targeted therapy that MAYBE we would respond. We then hit the small bowel with 5 high dose radiation treatments followed by double chemotherapy (Carboplatin/Paclitaxel) with cycles of treatment unknown – “continue until progression …”). **IT WAS AT THIS TIME WE BEGAN GIVING MY FATHER SMALL AMOUNTS OF C. OIL (high T#C% in the form of R$O) via ORAL route (ie on small bites of bread to swallow) following protocol to work up to a gram/day with goal of consuming “60 grams within 90 days.” We had heard so many life changing stories – and as we were pretty much otu of options – we gave it a shot.

My father’s LAST chemo was June of 2021 after a bout with c-diff infection and due to my father being too weak and sick to continue and two sets of scans showing that we had good response to both the radiation /chemo treatment. (*with help of OIL – possibly). And so the doctor advised that we would “take a break” from the chemotherapy – get stronger – and if things progressed “we could always return to chemotherapy ……”

In LATE August of 2021, scans showed further progression within small bowel (tumor/wall thickening approximately 4cm). My father has had bouts since March of 2021 with nausea/retching (*no vomit) followed by excruciating stomach pain resulting in at least 5 ER trips (March, May, June, July, August and September). These “bouts/flare ups” would last about 10-12 hours with Dilaudid pain relief within that time frame and would resolve and he’d be fine. **DOCTORS felt this was effects from radiation that has caused inflammation resulting in “small bowel partial obstruction” that would resolve on its own with bowel resting, pain meds, and IV fluids. (Due to oils being consumed at full gram / day over the course of 3 dosings per day the possibility of CHS ((Cannib. Hyperemesis Syndrome)) entered my mind – but now that everything is said and done – I do NOT believe the “oil” had anything to do with this.

In LATE September of 2021 (* and after we STOPPED all oil to help determine if that was causing issues with continued morning nausea/retching/abdominal pain.) we were admitted to hospital late September with all symptoms above and CT scan showed further progression in small bowel with added interval development of peritoneal implants as well as Peritoneal Carcinomatosis. A few days after that CT scan we had a *PET SCAN ORDERED* – PET revealed 10.0 x4.6 cm small bowel tumor mass along with further extensive Peritoneal Carcinomatosis throughout the abdomen and pelvis.

A few days after the pet scan (on September 27 and September 28) – My father began vomiting bilous and so we brought him to the ER and it was suggested that we have an NG tube inserted through nose/into stomach to drain and decompress stomach. A large amount of bilous fluid came out immediately via the NG Tube and they were fearful of a “small bowel obstruction.” This was confirmed via CT Scan – *ER SCAN CONFIRMED BOWEL OBSTRUCTION* We begin INITIAL treatment with Dexamethasone (steroid) to help with abdominal/bowel inflammation / obstruction, and our oncologist felt we were COMPLETELY out of options (surgery (cytoreductive or even removal of the tumor or part of the colon) – was NOT an option, HIPEC chemo was not an option (where they spray chemotherapy basically internally onto your organs – and so it was recommended to surgically place a gastrostomy – Venting G-Tube – to allow the stomach to drain, and finally recommended Hospice to keep my father comfortable due to severe and quick progression of disease. In other words, the harsh reality was – “get him home as soon as possible on Hospice so he can pass with his family by his side ….”

We brought my father home on October 1, 2021 after the placement of the Venting G-Tube, ordered Hospice, and I lost my whole world just days later on October 13, 2021. The Hospice people were absolutely amazing and were so proud of me that I had been my father’s healthcare giver for the past five years and also proud of me for the love and care that I provided to him – as I’d expect any family member to do for another dear family member.

Please now allow me to share my thoughts on everything – and please post any thoughts you may have as well as I’ve been struggling so so SO bad losing my father.

My first thought and struggle is from the very start of when we realized that the cancer had metastasized to the small bowel (in early 2020 and our oncologist advised that we STOP immunotherapy and BEGIN targeted therapy). I have read and read and read stories after stories on line that no matter what – “SURGERY” should be the #1 option when you have involvement with the small bowel. However, our oncologist felt that surgery was NOT an option as even if we “removed” the troublesome “tumor” there could be “potentially” 100 other tumors in there that we could NOT remove and that would GROW eventually etc. etc. While my dad initially DID respond to the targeted therapy, that only lasted 9 months before the cancer found a way and began progressing in size again …. so again – my dilemma is – SHOULD we have even at THAT point attempted surgery? Instead of basically throwing in the towel, beginning chemotherapy which we KNOW doesn’t work …. ??

My second thoughts are regarding the severe abdominal pain / nausea / retching episodes that began in March 2021 when we finished our 5 rounds of radiation and began the chemotherapy regime. (Our first ER visit with all this pain was in March 2021 4 days after our FIRST chemo session) …. now that everything is all over – I tend to think – what IF that was the Peritoneal Carcinomatosis all along – but was unable to be detected via the CT scan? Here I had potentially blamed the high intake of the C. Oil – when it may have never been that AT ALL (and sadly – while the C. Oil may have tremendously helped my dad – sadly it did NOT cure him – which was ALL of our hopes ….)

My final thoughts are with the ending involving the small bowel obstruction, the venting g-tube, and beginning my father on Hospice. My sister feels that “hospice killed my father” (i.e., the medications). I’ve tried to explain to her that #1, my father had not been eating properly for MONTHS (throughout the summer and early fall of 2021), #2, his LAST bite of ANYTHING SOLID was a bite of a cookie on September 27, 2021 — 16 days later he was gone. While we were in the hospital those few days (September 28, 29 and 30) all he had was IV fluids. My father had not been “hungry” for weeks and weeks. EVERYTHING to eat was a chore and a struggle. When the decision was made in the hospital to put in the Venting G-Tube it was said that he “could” eat and drink whatever he wanted as it would be coming out into the bag – however – that means 100% no nutrition and I would think no hydration? However, I would clamp the tube for as long as tolerable – sometimes an hour, sometimes two or three hours, in HOPES that his body was at least be getting some hydration. **Hospice did NOT want to do subcutaneous IV fluids as they felt that could lead to unnecessary swelling as well as possible fluid coming on the lungs** We offered my father “Ensure Clear” in hopes that would help with nutrition, and finally #3 we knew and sadly understood that my father had a very serious progression in his Melanoma cancer journey – and no matter how hard we wanted him to live and stay here with us – that just was not to be the case.

The Hospice medications were the pretty much standard/normal Hospice medications I would think?? Instead of Morphine though, we had Dilaudid. (My dad had already had experience with Dialudid from the summer and all those bouts of severe pain etc.) So our meds were the Dexamethasone (Steroid), a morning only dose of Methadone (which our Hospice nurse said that was to help his body accept all the pain meds and help with all over cancer kind of pain I think?), Ondansetron (Zofran) and Haliperidol for nausea and agitation, and he had a Scolopomine patch on his side of his neck for assistance in reducing fluids within the bowel due to the obstruction.

The steroid was twice per day (am / pm)
The methadone was once per day (am)
The ondansetron & haliperidol were “as needed” but alternating one with the other every “two” hours (so “four” hours in between those doses) and finally,
The dilauded was initially every 4 hours, or every 2 hours if needed (*and if desperately needed – every hour* – which we never had to give that every hour).

My dad has ALWAYS had a high pain tolerance, and just an in general high tolerance. So with the initial doses of all those meds – he was FINE – (i.e., not knocked out, not loopy etc.,) – however I think that as each day went on, and no eating, and in essence no hydration that was truly hydrating him I think he got weaker and weaker, and the cancer was winning, winning and winning …. The most Dilaudid I gave was a “1 mg” syringe full (and these were all under the tongue by the way) – but 1mg syringe every 2 hours. Again, PLEASE help me believe that we did NOT overmedicate my father and basically end his life sooner than need be. My sister, again, thinks it is the “medications” that took his life. I do NOT want to believe that – at all.

The last 3 or 4 days my father was pretty unresponsive … but he never was in any distress or pain – so for that I must be thankful to God. I have lost the absolute heart and soul of my being – of my existence here on earth. I struggle so hard every single day. My mom struggles, my sister struggles, my father’s brothers struggle – my father was not only MY whole world – but his ENTIRE FAMILY’s whole world. Thank you for allowing me to share – please feel free to ask me any questions – and please please please let me know your thoughts. May God be with you all and bless you all.