How are people with liver mets doing?
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gumdoctor. That rash!!!! Looks miserable. I wonder why it won't go away since you are not on the trial.
I was thinking about you yesterday, hoping you were able to get your TX and pain meds. I've never had that one, hope it helps.
At least your counts were good enough to get TX. Will you have a week off or have another one on Monday?
My age old question, why does everything seem to happen at the same time? If we could just do one major thing at a time it wouldn't be so overwhelming. 💞
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Gumdoctor. When I had to take Neulasta for AC chemo related severe neutropenia, the pain was so intense, I kept screaming and ended up in fetal position in hospital bed.
Oxy gave limited relief. What worked for me was a shot of Toradol, a strong anti inflammatory. Believe it or not, it was ordered by a geriatric physician who was on call that terrible night.
Hoping you get relief and soon.
S
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Gumdoctor, echoing the support for pain meds. Remember these three words: Extreme Self Care. Do what you need to get the pain under control. I'm sending up prayers for healing and thanks for your DH and DS to support you during this crap time. Sending massive hugs, JL
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Thinking of you, Gumdoctor.
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gumdoctor
You are amazing and strong even in weakness. You inspire and you bring compassion. Thanks for sharing your journey. It isn’t over yet.
Dee
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Gumdoctor, thanks for updating us, we are all thinking of you. That rash does look unbearable! I had something similar on xeloda and it finally abated with tube bandages and smelly cream with painkiller, cortisone and topical antibiotic. sending hugs across the ocean xo
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Gumdoctor- Thinking of you. Hugs.
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I have them too! Not sure how to calm them other then the Rick Simpson Oil. It helps a lot.
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Had my MRI of my liver/abdomen today for my visit with the interventional radiologist (did both in the same day). He says that the MRI is stable, and perhaps showing a little bit of decline in size for some of the spots. He is reluctant to go in and do anything right now because "stable is good" in cancer, or so he says.
So I'm "cleared" from his perspective for another three months.
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yay Jenner- stable is goo
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bevJen
Congrats on the good report
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Great news, BevJen! Stable is good
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Der BevJen, stable is good but "decline in size" is even better! Saulius
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BevJen, Glad to hear your good news!
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Bevjen Yay for good news. It's good that you are now his patient so if you ever have progression you won't have to search for an IR.
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Thanks, guys.
Grannax, you are correct. I know you really like your IR as well, and it's nice to have confidence in a specialist like this.
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My MO appointment is tomorrow. I won't get any results because I don't have the PET until March 20. I guess she will call me with results. I will have my faslodex injections.
Oh this waiting!?!?!?
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Grannax,
I feel you. Waiting for the next appointment, waiting for blood results, waiting for scans, and then waiting for scan results -- it's all such a waiting game, and it's exhausting. I try to compartmentalize all of this and not freak out over it, but it's difficult to do.
Good luck tomorrow (although it doesn't sound like it will be a momentous visit) and good luck on the March 20th scan. Breathe.
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Grannax2 - how did the Y90 treatments work for you? I am presently on verzenio and letrozole - my mets are in my liver. Was on ibrance but because of low ANC had to switch to verzenio. Been on treatment now not quite 1 year. My last PET scan showed a complete metabolic reposes with shrinkage of tumors (YAY)- although they are still there. I realize resistance will rear its ugly head (I pray to God for not awhile, but you never know). If the liver mets do show signs of progression, my MO and I have agreed to try some local treatment - y90. Interested to know how well this helped? What were side effects for you? THANKS!
HopeandGratitude
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Sorry to hear you are in such pain and I imagine dark thoughts try and take over. Sending you prayers for healing, strength, light, hope and release from your pain.
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I did have my MO appointment yesterday. Why can't anything go how I expect it to? I expected no upsetting information yesterday but that didn't happen.
My MO is leaving for a six week break next week, BEFORE my PET scan. Six weeks, what?!?! She says PA will call with results and if there's progression I'll be referred to one of the other BC MOs.at UTSW. Otherwise, stay on faslodex until I see her in 3 months.
But, but my chart is so complicated! A new doc is going to have to decipher it and change me to a new TX? Yes, they're all very good and I've written good notes. That's supposed to make me feel better? I haven't had a scan in six months, who knows what's happened to my lung and chest mets in that amount of time?
It's been a big deal to trust any MO. I ended up firing the first incompetent one (different facility). The reason for the long wait between scans is the IR doc. He likes to wait three months after y90 to get the most defin
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I got interrupted, sorry. The most definitive scans after y90 need to be done at 3 months post y90. I'm not confident that Faslodex alone is strong enough to keep my mets stable. I thought it was going to be a "better than nothing" 3 month stop gap while I was having y90s. Grrr. I understand all of this Docs need a vacation but six weeks?!?! What's going on with that?
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Grannax- So sorry for you to have to hear that news. I know the docs are people too, with families of their own, but 6 weeks??!!!! I understand your concern with having to possibly change treatments with a doc you don't know and doesn't know you. How about doing PET as scheduled and holding off new treatment plan until doc comes back in 6 weeks? I guess it depends on what they find on PET, but maybe ?? delay treatment for your current MO to advise when she gets back. Keep us informed.
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grannax I am so sorry for this turn of events. Hang in there!!
i posted my scan results on the Y-90 board. Looks like it worked for me at just 6 weeks later the tumors are “barely noticeable”.
Hoping the same for you Grannax.
Dee
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Candy. That sounds less stressful to me too. Dee, great news.
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Hi All -
Next chemo on Monday. Have had extremely painful throat after each Halaven infusion. Spent 7ish days in bed not able to talk or eat. Have lost 15ish pounds in 2 weeks. Able to wear some of my skinnier clothes (good) and not able to wear them all (not good). One pair of pants fell off, belt would not help.
I finally got out to a buffet restaurant today, looking for soft foods I could eat. Throat better and assume this is mouth sores.
Will find out what Dr Angel thinks on Monday.
Thank you for all your support and best wishes to each of you in your journey.
Gumdoctor
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Gumdoctor, it's so good to hear from you, but I am so so sorry to hear about your throat issues, but I'm glad to hear that they are improving.
Best wishes and sincerest prayers,
Katty
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Gumdoctor. I've been wondering how you are doing. If it's not one thing it's another for you. I'm sure Dr Angel will not like your 15 pound weight loss. If it is mouth sores, there's a steroid mouthwash that is supposed to really help.
Corona virus. Is anyone self isolating because we are at high risk? I have decided I should. I got groceries yesterday ( and plenty of cat food) so that I can stay in for a week or two. Or, we could all go to Gumdoctor's place in the mountains? Hahaha
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Grannax -
I have the magic mouthwash. I prescribed the magic mouthwash when I was still practicing.
Rx says to use every 4 hrs. Numbing effect lasts 10-15 minutes and makes things taste weird. I found it to not be very helpful. But I still have 2 big bottles and will keep using...
With tx again on Monday, I expect it will happen again. After the first infusion, Dr Angel thought I caught something from low WBCs. I see other spots on and under my tongue like mouth sores. I think the bad one(s) are too far back to see. She will want to check it out Monday and yes she won't like the missing 15 lbs...
Gumdoctor
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Kattysmith,
Thank you for your sweet concern and kind wishes. I am feeling a bit better and getting around some.
Gumdoctor
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