Shouting into the void

ThunderJeff · July 2018

Hi All,

It has been a while since I've checked in. In short--mom with stage IV mets to bone, liver, and lungs. Failed clinical trial with Keytruda + Xeloda. 4 rounds gemzar wk 1, gem carbo week 2, week 3 off. Scans late May showed shrinkage of most if not all lesions--so they went three more cycles. But ...

I'm sitting next to my mom, who is in a hospice bed (courtesy of JourneyCare) that was just delivered to my childhood home. I dont know how we got here.

The last three cycles of gem carbo have been brutal--massive weight loss (this has been a common theme since October: 150 lbs at dx down to 107 lbs last official weigh in) and on two occasions they sent her home because her platelets were too low. Nevertheless, like a trooper, she completed cycle seven, and was finally starting to pound the calories (this was on July 4th). I'll note the last cycle of gem carbo was administered when her platelets were low at 120 -- she has never received a blood transfusion during the process. Fast forward to Monday, and I get a call from my dad: mom can barely walk, has fallen a couple of time, is not lucid, not eating (he estimates she might weigh 100 lbs), cant make it to bathroom. Needless to say a stark contrast to ten days earlier.

We rapidly circled the wagons and will have in-home hospice assistance for the time being.

Now the screaming into the void part: I think the pain meds she's on have literally caused her to lose her marbles. The rest of my family seems to think she's circling the drain, but I think we have an obvious culprit: 50 mcg fentanyl patches with a hydromorphone chaser for breakthrough pain and ativan for anxiety. She weighs 100 lbs. Seems like those patches and the prescription narcotics are WAY too much for someone with her physical constitution. I adamantly made this point to the intake nurse yesterday, and she seemed to take me seriously--said they will find a regimen that makes her comfortable and hopefully lucid.

We were planning on taking a break from chemo anyway to allow her to get some strength back. But I'm of the mind we can get her to a place where she gets back some strength and we can take the next steps as a family--whether another treatment is attempted or not. This situation reeks of being overly drugged up than her succumbing to the cancer given her scans in May and her decent marker levels.

Any thoughts, similar stories, or insights would be much appreciated. Am I being overly optimistic and delusional?

My love, hugs, and prayers to everyone battling this bull $#%@ disease.

ThunderJeff · July 2018

UPDATE: Finally got her reduced to a 25 mcg patch--here's hoping this helps.

Husband11 · July 2018

Good for you for speaking up for her. She needs your watchful eye. Good doctors do make mistakes, over prescribe, prescribe where not appropriate, or fail to take into account the side effects. I pray that your mom improves. Don't let the treatment itself kill her. Keep asking questions. Don't lose hope.

bigbhome · July 2018

Jeff, the symptoms you describe could be so many different things. Could be dehydration, severe urinary tract infection, could be another infection somewhere. I would get her to an emergency room and get her checked out. We have seen people before who waited and just barely survived. Please don't panic, but please get her to a hospital.

Feel free to shout into that void! We all do from time to time! Let us know what happens with her, and you. I am sending prayers your way.

Claudia

ThunderJeff · July 2018

Thank you, Husband. Unfortunately I'm battling on two fronts--my dad and siblings are (for whatever reason) against stepping down the dosage slightly just to see what happens. I'm a big fan of Occam's razor--diminishing weight+same does = more concentrated dose of the most powerful prescribed opioid there is. Seems like stepping it down could bring her back to earth, and coupled with a chemo break, could give her at least a shot at a few decent months. Like I said, everyone else seems to be on the "she's a goner, keep her on 50 mcg," which I think is exacerbating all of her symptoms.

Husband11 · July 2018

I would ask what is the worst case scenario for the implications of reducing the dosage? I agree with Bighome that her overall health must be evaluated to see if there is another cause for the weight loss, lack of lucidity, etc. My wife thinks they write off stage iv patients and therefor neglect their concerns. It's certainly a danger.

LoriCA · July 2018

ThunderbirdJeff I'm so sorry that your family is going through this. I think your concerns about the opioids are valid, even if they aren't the primary cause of her problems. I was only on 15 mcg of fentanyl plus morphine sulfate every 4-8 hours and once I weaned off everything I couldn't believe how much my mind cleared. I think that much of what I blamed on chemo brain was actually opioid fog. Opioids are wonderful painkilers but you don't realize how much they affect your mental capacity until you are off them. I can't even imagine what my mental state would be on 50 mcg of fentanyl plus morphine. Did they take her right up to that much or was it a slow increase over time due to tolerance buildup?

Fentanyl can also cause loss of appetite, vomiting, fainting, weakness, increased heart weight, and weight loss among other SEs. Oral morphine can cause dizziness/fainting, nausea and loss of appetite, low blood pressure, shallow pulse, slow heartbeat, and trouble with muscle coordination, etc. When I was in the hospital they spent a lot of time monitoring my vitals and adjusting my pain meds until we found the right careful balance & combination of drugs that relieved my pain enough while not negatively impacting my physical condition. I hope the same can be done for your mom.

Wishing you both all the best!

ThunderJeff · July 2018

Bigbhome,

I hear you and I appreciate your concern. Like I said to husband, I'm getting resistance from people who are ultimately in charge of her medical decisions--namely my dad. He thinks we are at the end of the road and doesn't want to put her through the hospital ER ordeal. (In his defense, any objective observer would probably think that.) I just know based on what happened in February that, although it took 5 days and re-calibrating her pain med regimen, we were able to get her back to earth.

bigbhome · July 2018

Jeff, I'm so sorry for your situation! Maybe if you explained to your dad that if any one of the items that I mentioned are the problem, she should snap back rather quickly. I am sure you will be able to get him to see that. What if it is a combination of too much pain meds and dehydration? Or infection? Then she doesn't have a good chance of recovery. People think dehydration is not a big deal, but it could account for everyone of those symptoms, and without proper hydration, organs could start shutting down. Again, I'm not trying to scare you, I just feel she should be evaluated by a doctor, sooner rather than later.

Good luck, I will be praying for you.

Claudia

ThunderJeff · July 2018

Bigbhome and Husband,

Thank you so much for your responses. I think dehydration is a massive part of it. Her liquids have sparingly consisted of ginger ale and grapefruit juice--not a good combo. I just called hospice, who is coming tomorrow, that she definitely needs fluids, which they can administer.

And re: writing off stage IV patients--sadly I have felt that way since the new year. Physicians were all excited to enroll her in a clinical trial but do not seem to give a $#%@ about her now that she's on gem carbo. Feels very much like she got a cookie-cutter treatment from there on out, and now we are here, she is suffering, but I think she has something in the tank.

blainejennifer · July 2018

Jeff,

I am late to the discussion, but I think you are on the right track. I am obese, and I can tell you that 4.5 mg of fentanyl during my recent liver biopsy was enough to lower my blood pressure enough to scare the nurses, and I wasn't myself. It does funny things to your head - I didn't think I was addled, but my husband reports that I certainly was. So 50 mg, plus Oxy, plus Benzos on a 100 pound patient?!?! Has she even had a bowel movement in the past month? Good Heavens.

I hope my kin are as firm about my mental state and medical care as you are when it is necessary.

Jennifer

ThunderJeff · July 2018

Blaine, thanks for the input. I had a small victory today--patch was cut in half to 25 mcg (for the next 72 hours, at least) and a big bag of fluids is en route tomorrow. My dad and I had a long chat and I get where he's coming from--even if she perks up, there's still the horrible pain issues to deal with re: bone fractures and metastasis generally. He's worried about quality of life. My retort was that she just finished up a brutal gemcarbo regimen, such that if she bounces back, she may be able to live a few chemo-free months in (relative) peace despite the pain management. Trying to remember we are all coming from a good spot, I just have a feeling about this (and if I'm wrong, we're near the end and we just up the patch again).

blainejennifer · July 2018

Jeff,

Focus on getting her digestive system in order. Fluids and fiber are key. Her ammonia levels can build up with delayed stooling, and make her seem senile and dotty. For a while, some one might want to keep an eye on input and output. Do you know the old nurse's trick to check for dehydration? Pinch the skin on the back of her hand. If it stays tented for more than a quick breath, she needs more fluids.

I will tell you, bone mets hurt. But, they do respond to alternating icepacks and heating pads. Also, don't wait until she hits 5/6 on the pain scale before giving meds. It seems to work better if I address the pain at 3/4 - don't let it get away from you.

She must be so proud of you.

ThunderJeff · July 2018

Thank you to Blaine and all--

Hospice is coming today to do fluids and electrolytes, however after web-educating myself on symptoms of those about to pass away (in a week or so), my mom, unfortunately, checks off too many boxes for me to think the fluids and some liquid food will perk her up.

I'm devastated. She went from okay-ish on July 4th (eating a decent amount of calories) to barely conscious, confused, making repetitive arm movements and tugging her linens, and incontinence on the 16th. I have theories, mostly that the decision to go full-blast gemcarbo with her platelets at 120 (and her at 107 pounds) on June 20th was one blow too many. I just dont know why she "broke" in the time from the 4th to the 16th, especially because scans in May showed us making progress.

My wife and I have our first on the way in December. A part of me felt that because gem carbo was holding things steady that she may have been able to take a break and/or try a more tolerable therapy down the road and make it to that little guy's big debut; it's crushing that it wont happen. I'm with her now, holding her hand, stroking her hair, and trying to keep her comfortable. I've had 30 wonderful years as her son, I wish I had 30 more.

I'll keep the board updated, I hope I'm totally wrong about everything, but in the end I think she was too frail to get hit by cycles 6 and 7 of gem carbo. I'm assuming it's not unheard of for chemo to be the culprit?

On the flip side--if anyone has had a loved one battling this beast with similar symptoms to those I've described above and it was NOT the end, any input on what the issue was and how it was resolved would be appreciated.

Hugs and prayers to all,

Jeff (the god of thunder)

blainejennifer · July 2018

Jeff,

Do you think she might might have developed some Central Nervous System mets? Her decline was so fast, it seems. The linen tugging is something I have seen with brain mets (my father).

I hate that we die - that any of us die. But, without death, there could be no babies, as we would overcrowd this dear planet. Like birth, death is a process.

I am so glad of your 30 years with your Mom. She got to see you partnered and looking towards fatherhood. For we Moms, that's some grand stuff.

This is going to be hard and beautiful, so take care of yourself, OK?

ThunderJeff · July 2018

CNS mets were definitely on the table and something that was raised as a possibility during her February hospital stay. (CT scan showed a "signal" that could have implicated meningeal involvement, but nothing was ever definitively confirmed.) She wasn't super brain mets symptomatic, so we went on our way and stuck with the gem carbo. If I was a betting man ... I'd say at some point the CNS became involved. Seems like a totally plausible explanation. Thankfully, hospice has been great, she's comfortable, and I'm praying that if we leave a little bit of kindness and love in this world that we get to see our people again--that everyone is waiting. I hope.

blainejennifer · July 2018

Jeff,

I'm a secular humanist and a complete skeptic, but I feel my mother every day. Can't explain it, but there it is.

Jennifer

Grannax2 · July 2018

I wish I had known about this site when my mother was dying from MBC. It would have been so comforting to ask questions even if there were no definitive answers.

Just a few insights from my own experience. With fentanyl people can have very strange, life altering SE. It's uncharted territory when no one can confirm " Yes, that's an SE or No, that never happens." Never say never. I had reactions no one thought were from fentanyl, gradually took it away ( two weeks) and I was me again. I know your mother may not even have two more weeks on this earth. But, just telling my story.

I certainly did not have evidence of disease, like she does. It's all wrapped up in a complicated ball of facts, opinions, quality of life and pain levels. But, I know you must wish for a few words from her that are not slurred by drugs, I did, from my mother.

She was on no pain meds and still went down the same path as your mother. After she was gone the Dr.said she probably had a stroke, secondary to brain mets. I certainly don't know what the next few weeks will be like for her or your family. But, it seems like to me that holding her hand is the right thing to do for now. I look back and take comfort in the fact that I went above and beyond regarding how much time I spent with her. Whether there were words or no words, comprehension or no comprehension I may never know. I do know that being there means something to me now, fifteen years later.

ThunderJeff · July 2018

Blaine,

Thank you for sharing that. We've settled into a good pain med/anti-anxiety med regimen now. All four of her brothers and their families have been by to visit. I'm trying to find some catharsis in this--telling her stories, thanking her for all those childhood trips to Brookfield Zoo, telling her I love her, telling her that her grandson looks nice and healthy in the ultrasound, just anything I can think of that I would want to hear--and apparently she can. I'm administering all her meds at this point and giving my dad a much needed break. I've broken down a few times thinking of the time we've been robbed of, but there is some comfort in being able to help with the transition. She was in so much pain from the get go with a fracture/collapse of C6 (due to 3 cm bone mets) and spine/liver/lung mets, that being able to help relieve that pain and help her find peace now is the least I can do.

My background leads me to the law of conservation of energy: energy can be transformed from one form to another, but can be neither created nor destroyed. And so we change, life changes, but it's never truly gone.

blainejennifer · July 2018

Jeff,

Agreed. I was going to say "Amen", but that's just not my style.

Jennifer

Shouting into the void

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