Best Of
Re: Are you currently (or have you been) in a Clinical Trial?
@cure-ious Thanks for checking in! You have perfect timing! I had my third dose of Datroway today and the craziest week ever…
I'd been doing 90% better on round 2 than round 1. I switched from Compazine to Ondansetron and all the gagging, vomiting, and poor eating resolved. My stamina improved slightly and the fatigue consistently improved after day 7.
Then on Sunday, I started having right shoulder pain behind the blade and it stretched to my ribs so it hurt when I breathed too deep. Soon it spread to my side/abdomen and I figured it was referral pain and notified the doctor's office. I started with Tylenol to ibuprofen to Tramadol then finally hydrocodone to get the pain (constant 6, spikes of 8) under control.
The doctor ordered early scans for Wednesday. Results showed significant growth of the majority of lesions, including one that was affecting my hepatic veins. The last set of labs showed significantly increased liver numbers, so I was expecting horrid numbers today…
They all went down by like 50 to 100+. What the hell?
So the oncologist thinks that the 'growth' is actually swelling and healing. The pain could be inflammation, so he prescribed steroids. Since my numbers improved and the chest lymph nodes appear to be smaller, he's leaving me on Datroway for another few cycles before we scan again at the 3-month mark.
What a crazy rollercoaster this week has been! Ultimately good (if not completely solid) news. I could sure use a beer and a nap.
That's it from the Datroway battleground. :)
CBL
Re: I’m on hospice - anyone else?
@kailag - Kaila, we’re so sorry for your loss. Your mom, Caryn, was a beloved member of this community, and she touched so many lives. We're holding you and your family in our hearts.
The Mods
Re: My Husband, My Life, My Love, My Family, My Cancer
@goldensrbest - A belated Happy Birthday to you! I know what you mean about the birthdays and "cancerversaries", etc. and how they can really mess with your head. I'm 72 now and it was essentially on my 70th birthday that I was diagnosed as stage 4. I was originally diagnosed at 65, but that was stage 3, and I moved on, unfortunately. Glad to hear that your scans were stable and of no real concern to your doctor. I've had a few of those myself, where they seem to note something, but the doctor isn't all that worried, and then we wait for another round of scans. What a life, huh?
Re: Abemaciclib Verzenio for Stage IV
Thanks @threetree I'll try the probiotic sauerkraut. I have had it in the past and I really like it. Will try the probiotic yogurt also. I eat basically bland but probably eat more spicy than I should when my husband cooks! And I agree the low estrogen as you and seeq said probably has something to do with it. Seems odd that after after more than I year I'd develop this issue now though? It may all be unrelated as my oncologist is insisting it is. But I don't trust her. Thanks again for your suggestions.
Re: My Husband, My Life, My Love, My Family, My Cancer
Hello dear sisters:
Mara - sorry your fridge took a dump and caused you to lose so much food. Glad things are back to working!
Candy - my heart aches for you and your friend’s family. So hard to make any sense of such a rapid demise. And extended condolences to exbrnxgirl’s family. So much loss. I hate this damn disease that steals all we love.
Threetree - I’m glad your biopsy is behind you. It did not sound pleasant. Hope the results lead to a line of treatment.
So I was absent for most of last month because it was a difficult time. I turned 70 in the early part of July and had a hard time reconciling the me at 70 vs. the me pre-MBC dx at 64. I also had my scans mid-month. Bone scan came back in a couple days and had a new finding of uptake in my right femur. Of course my mind went to dark places…what did it mean. Was it progression? Took over 2 weeks to get CT results back and thankfully everything was stable. Saw oncologist at end of month and she was not concerned about bone scan, particularly since I have no pain. So I will wait until next set of scans and if there is still an issue I will push for further testing. Finally, my 6yr MBC anniversary was at the end of the month. We all know how that sort of thing can mess with our minds. I also saw the plastic surgeon mid-month for a consult regarding my implant removal. He was shocked that I had no pain and full range of motion. He offered that he could do a flap type surgery but I said unless it’s an emergency, I don’t ever want to see another OR. Will proceed to get a prosthesis.
I am here for pocket duty, day in and day out. We are all in need - I think it’s a daily thing of who needs it the most. HUGS to all🤗
Re: Stage IV MBC Fitness
@AJ - No, they didn't give me any painkillers and they implied that this was usually a pretty straightforward "go home the same day" and rest and you'll be fine tomorrow sort of thing. From what I'm reading online that is definitely not always the case. I've read about the pain in the right shoulder than can happen. Apparently there is a nerve in the liver area that refers to the right shoulder, and it can be affected by a biopsy. I'm sorry that happened to you. I'm also reading about low blood pressure problems that can come with it. Most things I read say to give yourself a good week to feel back to normal, but the medical people were talking more like 24-48 hours unless you wound up bleeding excessively or got an infection. I've had none of those problems, but I am just plain sore and very tired. I think they did say I could take Tylenol if I felt the need, but I haven't done anything like that at this point. I am a bit better today, and I think I'll be fine overall. I just wish they had given a more realistic picture of what happens instead of downplaying what might be some common realities for a lot of people.
Re: Zometa side effects
Thanks @benlin I might put off the tooth extraction for quite awhile and stick to my Zometa infusions. I am surprised and knock on wood so far my 4 infusions have been ok. I take a Tylenol about an hour before and I have fluids while I have a 30 minute infusion. While certainly not what I want to be inserted into my body I think I prefer it over the tooth extraction.
And thank you for the Clearwater connection. I am about an hour and a half away from Clearwater. Can you give me the name of the office or is that being too forward? I do not trust my Ocala dentist office that I have been going to; I've had more trouble with my teeth since I started going there than at any time in my life. Which is why I was wondering if Zometa had anything to do with it. I think my dentist is just a thief.
Thanks again.
Re: Abemaciclib Verzenio for Stage IV
Thanks @seeq I have taken an at home UTI test and it came back negative. Not that I trust that 100%. I don't have many of the UTI symptoms however. Mine is more pain in my low abdomen and lower back. I had a thickening of the bladder noticed in my last CT scan so guessing I have more going on.
I have been taking cornsilk as suggested by a nutritionalist and plenty of cranberry juice but I will try the supplements and probiotic as well. Just in case….
Thanks again.
Re: I’m on hospice - anyone else?
I haven't been on BCO for a while, but great sadness has filled my heart reading your posts. As far as the ascites, have you considered getting it drained as a comfort measure? My dad had home hospice do the same and made him so much more comfortable.
So glad your daughter, son in-law and grandson will be spending time with you. I recall they reside a few hours away. I'm sure making these special memories will last a lifetime for them.
Just want to say thank you for being that "person" for me when I needed it struggling with this hideous cancer. Hugs
Re: I’m on hospice - anyone else?
@kbl Thank you for always being a positive source for all of us here. I have always admired your grace and attitude as you approached each hurdle along the way. May you get the relief you deserve with palliative sedation and a pain free transition. Sending love and support to you and your family❤️
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