STEAM ROOM FOR ANGER

Shetland- So sorry. What others take for granted. MBC is shitty--pun intended.

Jaycee, thank you, palliative care advice did cross my mind. Maybe they would think of something I haven't? Help to big-picture it? In between all this garbage I do enjoy my life and my family. I don't feel like I am anywhere near being simply miserable and questioning whether it is worth it. I'm just weary of trying to manage things and worrying about it. Serenity, thank you for recognizing that a tantrum is warranted! You remind me that I should remember the bone broth for gut healing. Candy, I I know you get it. Pun appreciated. Flashlight, yes, I have daily yogurt or kefir. I really do know a lot about nutrition. Perhaps I should look into making a supplement drink that is not junk food. Sigh, I’m tired of problem-solving this.

I should mention for those who don’t know, neratinib is notorious for causing diarrhea and the trial requires meds for it. I have already lowered neratinib to 2/3 starting dose and I have three anti-diarrhea meds on board — loperamide, budesonide, and lomotil. I had a handle on it until antibiotics and much worse, potassium supplements, upset what I had attained.

ShetlandPony - I'm not familiar with your regimen, so I apologize if I annoy you with another suggestion. Have you tried adding foods high in resistant starch? It's another nutrient good for gut health. I usually get it through cooked and cooled potatoes or rice. I steam whole potatoes in the Instant Pot and cool them in the fridge. I cook them again to eat (in any way you like to eat potatoes). Smashing them helps release tension in your shoulders.

Yes, moth, I wish somebody else would step in and give me a break. Idk what else can be done, though. I am weary, disgusted, mad. I did call the pharmacist Friday. He agreed that the potassium powder in water drunk slowly would be less likely than the capsules to upset my GI tract, but pointed out that “that’s a lot of work”. Yup.

I have considered sending my rant to my onc. Or to the cancer center’s therapist that I talk with once a week. I feel myself checking out, not trying to do much of anything. Hungry but tired of trying to figure out what food to make. Feeling guilty for not feeding my DH. Meh.

Wait, are we high risk? Even if it's been years since chemo? That's news to me!

Shetland - I'm so sorry. I don't know what else to say. You should definitely get some professional help with this. Either your MO or palliative care.

It is my understanding that our immune system isn’t compromised unless we are in active treatment (chemo/rads). AI’s have no effect on our immune system.

Stay healthy and stay safe🙏

Bella2013

Shetland, there was a really good article in Forbes recently about palliative care. Part of the title was "hidden in plain sight" if that helps find it. I would post a link but it is so full of ads, I don't want to. It's not that long but the ads make it look long. Palliative care is the best thing I've done medically in a very long time, maybe forever. I get to sit and talk to a group of very good medical professionals for two hours or more. Once, I got the MD on the team alone for 2+ hours. No bum's rush. Real thoughtful interaction. It happens to be run out of my PCP's office which is a teaching practice with medical residents. Once in a while, I get a dufus resident who doesn't know my history and says dumb things but the whole process is so worth it. They always have ideas way out of the box. Once, I admitted I take expired medications. The MD said, "so do I." One resident said you could take an approach of having an rx written for more times than you actually take it to save money. (There are good residents, too.) Most places have palliative care now. If we have it here (we have two teams, one at each hospital), then it must be everywhere.

Shetland, I never read this thread and don't know what made me click on it, but then I saw your news about antibiotics throwing you over the edge--ACK! I'm so sorry, especially after all the progress you'd made.

You may be at the point where you're tired of suggestions, and if so, please disregard. I started Nerlynx in September and found myself in a perpetual diarrhea/constipation cycle, which was awful--the constipation part I found the more difficult, honestly. I have a friend with IBC who suggested Miralax, which prevented the constipation part and generally helped. When I mentioned it to my MO, he thought Psyllium would be a better choice because it's more bulk-forming. Sorry to be so graphic here (truly)--the Miralax did tend to make it more sludge-like and less like pure water. I have moved to Psyllium only and can't imagine what I'd be like without it. All this said, I can be going along merrily and be fine for days and then suddenly: BOOM! Game's over. Sometimes I have a few episodes and am able to "right the ship" and other times it's a downward spiral and I spend a few days on the toilet. I know you're in a trial and this may not be an option for you, but I've found that when this happens, stopping even for a day (sometimes two) can be a game changer. Honestly, Shetland, I would think about breaking some "rules" if I were you, because once you're at that point, there's no way for your body to recover without taking away the cause of the problem. Having spent a good amount of time on the potty these last two days (not even having eaten lettuce!), I really feel for you and hope things get back into balance for you, and quickly. ❤️

Here's the Forbes article. I cut all the ads and pasted it here. Probably illegal. I don't care.

Palliative Care: The Secret Hiding in Plain Sight

Sachin H. Jain

Diane Meier wanted to talk.

The renowned geriatrician, professor of medical ethics, and director of the Center to Advance Palliative Care read my article in Forbes and was concerned. "Everyone is going to think palliative care is only for people facing the end of life," Diane told me. "That's not true."

I re-read my article and realized that Diane had a point. I had written my piece in order to convey that, as clinicians, we don't always put enough emphasis on the fact that much of what we clinicians offer does not cure disease – it manages it. I believe this is especially true when it comes to older patients and those with a range of serious chronic illnesses, for whom some of our medical interventions do a lot more harm than good. Rather than chasing low yield, high risk interventions, we should help our patients learn to live well despite chronic illness, help them find enjoyment and pleasure in the things that matter most, and provide them with the knowledge they need to make informed decisions.

And that is where palliative care comes in. Generally speaking, palliative care offers specialized medical care for anyone living with a serious ailment, with a focus on expert symptom management, skilled communication, and support for patients and their families. It is provided at the same time as all other medical care and its aim is to provide relief from the symptoms and stresses of illness, improving quality of life for both patients and families.

Seniors are the group most often associated with palliative care. Among this population, it can be particularly helpful for those living with illness over a prolonged period – which, due largely to advances in medical technology, has become more common. The Department of Health and Human Services reportsthat 60% of older Americans manage two or more chronic conditions, such as heart disease, cancer, chronic bronchitis, emphysema, and Alzheimer's disease.

What's more, seniors are by no means the only patients who face severe illness. Consider the case of Rae Anne, for example. She's a working mother of twins who developed Stage 4 head and neck cancer when she was in her mid-40s. Rae Anne underwent several rounds of chemotherapy and 35 radiation treatments. And then, Rae Anne's oncology team told her to wait at home for three months until her next scan to see if the treatment worked.

"How do you go from being at the hospital three to four times a week to, 'Now go home for three months?'" Rae Anne asks in an interview posted on the Center to Advance Palliative Care's website. She says a palliative care team guided both she and her family through the physical and emotional symptoms of her illness and the side effects of her treatment. They "allowed me to feel that what I was going through was normal and that there was an end in sight," she says. Palliative care helped Rae Anne maintain a high quality of life while remaining in control and independent as she faced her illness.

There is also a growing body of evidence that suggests palliative care can lower out of pocket and societal health care costs — and not just for the oldest and most frail people. A recent study published in JAMA Internal Medicine found that hospitals saved more than $3,000 per patient on average when they added palliative care to their treatment. Another study of cancer patients found that the addition of palliative care reduced the cost of care by more than $2,700.

These studies largely looked at patients who were undergoing expensive hospitalizations. But as I pointed out in my previous article, models that bring palliative care into the home prevent symptom crises, thus helping patients avoid the hospital altogether. This allows people to stay in control in their own homes, avoid the risks of hospitalization, and – as a side effect of better care, results in significant cost savings.

This makes sense. When patients experience symptom distress or side effects of their treatments, they often call their doctor's offices. For more than half the day, a recording will tell them to call 911 in a medical emergency. But the support offered by palliative care teams can help patients navigate their illnesses more smoothly without dialing 911. "Palliative care came in with the monitoring that I needed...if I had a question, my phone call would be returned," says Rae Anne.

"Palliative care is the secret weapon hiding in plain sight for people living with serious illness," says Diane Meier. I agree. Whether it's with an older patient managing comorbidities or a younger patient dealing with an unexpected diagnosis, palliative care can improve people's qualities of life by providing them skilled and responsive care while helping to rein in costs for patients, families and health systems.

It's time to make this secret weapon less of a secret.

Not really sure what I want to post, just irritated with things. People are done listening about cancer. And I get it. It shouldnt be on my mind every day. Will there be a day it's not. Its been 5 months and it's been a whirlwind so IguessIam still processing?

Got my nosey neighbor good today. I was outside taking some stuff to the recycling and trash bins and she proceeded to tell me I needed to get back in the house because of the “high risk crap”. I looked right at her and point blank told her that I am not listening to her and according to research I have done, I am at the same risk level as she is, for the fact that I am not receiving treatment! I proceeded to tell her that the “high risk” category as far as those with cancer goes is for those actively receiving or having just finished treatments from what my research has told me. She looked like a fish that had been out of water for too long!

Lol, jaycee! Thank you for the article. Re dufus resident, yeah, what would you know after using that drug for 20 years? Sheesh.

I printed my rant and showed it to my onc. She gets it. My potassium was ok to day, so she said to lower my dose by half. She said to eat lots of potassium foods. As to my fears of getting the drug taken away if I don’t measure up, she said the trial people had already tried to but she got on the phone and fought for me! Yikes.

Thank ya Spookie!

TGIF just doesn't seem to be what it used to be. Hubs had 1 bad day this week. He saw the NP yesterday. She still sounds optimistic whereas I think she could tell (if that's possible to do over the phone) that the daughter and I are a bit deflated. Hubs really gets along good with her so she was helpful to all of us with these damn steroids. She said give 2nd dose mid afternoon with a snack. Not the 12 hrs. apart that MO and his primary said to do. UGH. Hubs does take a Lorazepam before leaving for radiation. He also has to take Memantine for 4 weeks at different dosages each week.

I really am praying we can get him back to this place. He built these 2 cottages and he loves it there. It opens back up on the 22nd of this month. They're almost finished. I am hopeful we can reach this goal. I was looking at all the beautiful pictures posted in the covid section so I will post these here too. It's not the most scenic place in the world, but it's going to be a great escape on the weekends only a hour away from home.