How long have you been Stage IV?

I love an Elaine Stritch version also-it's not one where she is at the White House. I'll have to go on YouTube. She has the best delivery.

@tougholdcrow

Elton John, how perfect. Now I have two songs looping in my head!

@chicagoan

Think we have the beginning of a Stage IV album 🤭

What do you women think of "Defiance" for a name?

@EddieJ, @tougholdcrow, @ssales13, @emiliamarty, @lafish, @chicagoan @eleanora and everyone else! So fun to hear all of your song choices for "theme songs." I'm still trying to come up with one of my own. Will be sure to listen to all of yours.

@tougholdcrow , I know what you mean about fatigue. I was fine the first 4-5 treatments of HP protocol, but since then I have noticed my energy levels way down. "Scrub the floor?" It can wait. "Dust?" It will just be back in a week so why bother. That was never me before. If I do have any energy at all, I try to walk, do some steps on my little step machine, and lift weights to keep my bones strong. A tough order when we are so tired, right?

Also wanted to update everyone on my trip to the ER last night. Since my last infusion 12 days ago, I have had more fatigue accompanied by shortness of breath, increased heart palpitations and tachycardia (I've had both of these symptoms to a mild degree off and on since I had long Covid in 2020), tightness in chest and headaches. When I called to speak with the triage nurse at my cancer center, she told me I should really go to the ER and get things checked out. Since I'd just had an ECHO 12 days ago prior to my last infusion, I knew the EF was normal. Anyway, fast-forward to last night. The team at the hospital does blood work. All normal there. Also does ECG/EKG. The final report indicates "possible left atrial enlargement" and "possible right ventricular conduction delay." So, do I need to see a cardiologist? I didn't see the report until I went in the portal this morning. The doctor at the ER simply said "there were no concerning findings," but didn't mention the "possible" items. Hum? They also did a CTA Chest With Contrast to look at my lungs. Findings: "No detected pulmonary emboli." So at least that was "no concerning findings."

Now my question is: Have any of you had similar symptoms and what were you told? I also have sinus issues that could be the cause of my headaches (most likely) and heartburn, which has been ramping up the past few weeks as well. I've read that severe heartburn could cause palpitations and even shortness of breath (SOB). I did begin taking Pantoprazole along with the occasional famotidine, four days ago. So, maybe none of that has kicked in yet. Sure tired of the constant pressure in head and SOB. The palpitations are actually less concerning to me.

I will be seeing my MO in 10 days for my next infusion and will certainly ask her what she thinks. Don't see my PCP until the 28th. Who knows, this might just be my allergies really kicking my butt for some reason or some strange new virus in town!!

Anyway, sorry for the long-winded information, but was hoping for some insight from you "experts." Any comments, information you can share would be most appreciated.

Hugs, Pam 💗

@eleanora Love your response! And the length of it. Lots of great information and detail. Interesting that you say "possible" might mean it hasn't been read by a cardiologist. I just checked. It was read by an internist. He may have said "possible" simply based on my symptoms. It is also interesting that the tech who was doing my ECG stated, "I don't see anything of concern on this, but it needs to be read by a cardiologist." You are one smart cookie, @eleanora ! Yes, we do spend a lot of time wondering if these symptoms are cancer-related, treatment related, or something altogether new. Or, in my case, older issues that have ramped up. It is so very frustrating!

I had sent a detailed note to my PCP through the portal this morning. Of course, I don't expect him to read it until Monday. I will insist that a cardiologist review the ECG now. I had thought that the ER doctor that came to see me several times was a cardiologist, but she is an emergency medicine doctor. So crazy! I really don't want to undergo more tests and procedures, especially "just because." I may mention this to my RO on Monday when I have my next RADs if he is available. I don't have an appointment with him until Wednesday. Probably soon enough, though. It's so sad that we have to spend so much time worrying over things like this because our doctors don't often communicate with each other. I do wonder, when I see my MO in a few weeks, if she will bring up my ER visit and what she thinks or will I have to initiate that discussion. Since she is at a different hospital, she may not even be aware of the visit! It seems we really all have to be our own advocates and researchers.

So thankful to have this group to share ideas and gain insights.

You take care, too, and have a fabulous weekend!

Hugs, Pam 💗

@ssales13 Tests, tests, tests! If only there were some way we could “study” for them to make sure we pass! 😳

Sorry you’re feeling a little under the weather, especially considering the weather you have today! Feel better soon and praying for good results on your tests.

Hugs, Pam 💗

@eleanora yikes! Clivus radiation is next on my list… Better get all my deadlines done in advance of that.

I got the neck down part of the skull and whole body MRI results on Friday, so this is in addition to the two dural mets and the clivus/C1. General mess of bone mets everywhere, and a new little horror on my liver, the first visceral lesion. Surely there’s a merchandise opportunity here: my first visceral lesion scrap book, appropriately morbid greetings cards etc. It doesn’t change the treatment plan. I’ve resumed Truqap at a reduced dose.

I don’t yet feel old enough to embrace I’m still here. I can’t rock the Jean Smart look and attitude. I’m taking Stevie Wonder, Don’t you worry ‘bout a thing.

@eleanora ,

Rads , ugh! I am still really struggling with the after effects of pelvic radiation. I can barely walk. The muscles in my thighs and calves seem to be strengthening and feel less contracted (tight muscles is an inadequate description). The soles of my feet and all the musculature on the bottoms of my feet are killing me when I stand or walk. And those aliens are still swimming around in my pelvic region. I try not to be a kvetcher but the level of impairment and the constant discomfort are rough. Take care

Hope everyone continues to feel better or well everyday 😊

@emiliamarty @livinglifenow Hail, fellow writers! I seem unable to write anything significant about my cancer. On some level, I find it quite tedious, as if the b**stard doesn't really deserve that kind of creative attention. Like being stuck with a bad husband because he owns the house and has you on his insurance.

Hoping for calmer seas ahead for @exbrnxgrl , @emiliamarty @eleanora @livinglifenow and anyone struggling with medical procedures. It's like suddenly finding yourself on another planet where the language and technology are pretty baffling and perhaps not entirely designed with human comfort in mind.

Thank you @tougholdcrow . The soles of my feet felt slightly less painful today but mobility is still not easy. My poor little dog can’t quite understand the situation. I’ve said it repeatedly but the shock of this whole thing has really thrown me.

@emiliamarty @livinglifenow @tougholdcrow @exbrnxgrl

Thanks for the support and laughs. Good way to start my morning. 😉

Emiliamarty, the clivus radiation took a while for recovery, but the most annoying problems were from what my RO called "back scatter" - the lower levels of radiation that bounce off the target. In the short term that included a burned throat and esophagus as well as the pressure from brain swelling which caused vision and balance disturbances. The first two lasted about 10 days and were an excellent excuse to live on milk shakes and smoothies, but please learn from my mistake and avoid any citrus in the smoothies -not a good idea on burned tissue! The brain swelling was treated with steroids and that took about 2 months - 6 weeks of steroids and two weeks to recover from the steroids. In the long term (my radiation was in June, 2022) I have had significant growth in a cataract in my left eye. Surgery for that, plus lens implant, scheduled for 4/22.

My strongest recommendation is to insist that they prescribe zofran, an anti-reflux medication, and of course, steroids, before the first session. My SEs started at dawn on the day after my first session and it took about 8 hours to actually get the meds after a ridiculous back and forth between my MO and RO that included such gems as "not sure which of us should be prescribing that" and "Oh, you're having side effects, how unusual". This treatment and its SEs can be managed, but sometimes you're the one who has to do the managing. I hope I haven't scared you. It sounds worse than it felt. Two and a half years later, knowing what the short and long term results would be, I would do it again in a heartbeat.

Please ask any questions you like.

Hope everyone has a lovely day and a Happy Easter and/or Passover to all who celebrate!

Eleanora

@ssales13, @tougholdcrow, @emiliamarty, @Elenora, @exbrnxgrl, @lafish, @chicagoan, @EddieJ

Juliana, I think you have taken lessons on how to write a cliffhanger. You always make me excited to read your next post!

Good on you for trying with the rescue dog. It's not always easy finding the perfect fit. We got our puppy three years ago—six weeks after my knee replacement and three months prior to me getting a large extruded herniated disc. The puppy challenge was incredibly great. He is now an energetic three-year-old. When I was diagnosed last summer I had lots of tests, as you all know. And, since my cancer center is over a 3 hour round trip drive, we often left him at a kennel, which was getting stressful for him. We asked our MO's staff if we could bring our dog to appointments. They said, "Yes!" Of course, he is not allowed in imaging or the infusion center, but my husband walks him around the hospital and he has become the unofficial hospital mascot.

Now, so I do not write as lengthy a post as you, Juliana, 😉 I will end with "I FINISHED MY LAST RADIATION TREATMENT TODAY!"

Have a fantastic weekend, all!

Hugs, Pam 💗

@EddieJ What a cutie pie! 🥰

This is PJ. 🐕‍🦺

Hooray for dogs! A life long dog owner, I adopted my little Pumpkin from a local rescue organization at age 1. She is 4 now, my retirement dog, and a very good girl. I actually feel bad that our walks have been severely curtailed as I recover from my ugly pelvic rads. She knows something is up and I wish I could explain it to her.

emiliamarty,

My pelvic/sacrum rads ended a bit over two weeks ago. It has been debilitating and something I never imagined. My mobility has been compromised. I am seeing teeny tiny improvements, and some setbacks, day by day but I remain in shock over how difficult it’s been. Thinking of you and hope you’re seeing improvements as well.

@lafish Another cute cuddle-pup. Congrats! I will keep you in my thoughts and prayers for a good scan on Monday!

Hugs, Pam 💗