How are people with liver mets doing?
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Gumdoctor my hero. Yes tough B's unite !!!!! Enjoy your "snow day".
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Wow that cake is beautiful. We are military as well my husband is Marine Corps. We are so grateful with how accommodating the Marine Corps has been for us with my BC. They have been amazing. Hope you have had the same experience with your branch.
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Gumdoctor, I suspect the NP didn't know what to do and just said "Oh well, I will just cancel her treatment and wait for the doctor to come back". CYA decision with no regard for what is best for the patient. Selfish and lazy.
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NicoleRod,
I used to be in the Navy and worked with Marines at Parris Island. Unfortunately the Army has NOT been accomodating or supportive at all. I had a recent nuclear meltdown as they were attemtpting to kick me out with no benefits. I am a full Colonel. I am not saying I deserve special treatment. But I deserve decency and respect. They have given me neither. They missed my BILATERAL brradt cancer for over 3.5 years. And because I am active duty, we cannot sue. They killed me. And there will be no accountabiliry. And they will kill again...
I had to engage my very own Perry Mason who fixed the erroneous discharge problem the same day he heard about it.
I am happy for you to be getting good support. I do not know what that looks like.
Gumdoctor
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JFL - You may be right. I will be meeting with Dr Angel on Thursday. She was out of town the day this happened. I am much calmer and much more accepting of what happened. I realized I can't be the one to waste my precious days...that is on me if I do...not them.
Hopeful for a happier outcome on my next treatment day.
Gumdoctor
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Wow Gumdoctor so sorry to hear that. I am not Tricare Prime though..I pay and have Tricare Select. I love Tricare Select. I have never had any desire to use the military for my health care. Just so you know...my radiologist in Hawaii thinks that the doctors missed my cancer the year before at my mammogram in Maryland...so it isn't just military docs or facilities that can fail us. They failed me. That radiologist in Hawaii saw my mammogram from Maryland on the disc and said he was sure they missed it. So for over a year that was growing and left the breast to become stage IV. Would I have Stage IV now if they would have caught it the year prior...I don't know but there is a good chance I wouldn't have.
I hope things get better for you (((( hugs)))) I really do. My husband literally LOVES being a Marine...yes, still after 14 years...lol he says it's not not a job its a life style and the day it becomes a job to him is the day he will get out. So we are in till retirement. My one prayer and goal is to live to see him retire.
PS: I heard it's beautiful at Parris Island!!!! We are sooo happy to be going back to Quantico VA it's our favorite base and we love the East Coast (we love a change of season).
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And I thought my brother got bad medical care at the VA. That's bad enough but a Colonial on active duty to be treated like you have gumdoctor is just such a blow to those of us that thought that our military would be treated with excellent care. To miss your Cancer? Unacceptable. Sorry you have to spend time and money defending yourself to get what is owed to you.
Moving forward to the next first thing. My Day 2, Cycle 1 Gem/Carb on Wednesday. Hoping my counts are high enough to get my TX, hoping the antiemtics will be greatly reduced.
Also hoping I get to see my grandchildren before school starts. Three goals, ill let you know.💞
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I have some good news to report. I had a PET scan Saturday and my Navelbine/tamoxifen combo is working! All liver lesions are smaller with much less uptake and the one bone met that lit up is now “lights out”. I am super relieved. It has been about a year, maybe more, since I have had a good scan.
Grannax, good luck with treatment on Wed! My MO prescribes something for nausea with every chemo. Every chemo,I request it be removed. Usually, I will let the first treatment go and take the antiemetic but start pushing back after that. I have found most infusion room nurses will not allow me to forego it if it is on the orders. However, if I ask the MO or the MO’s nurse who submits the chemo orders (or ask the infusion nurse to call one of those two people if I forgot to ask at my appointment), I have had success that way.
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JFL-- Yippee on the good scan. We need to hear the good news. Hoping for a long run at this treatment combo.
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JFL- I am thrilled! Hugs to you!
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JFL AWESOME!!!!!! So happy for you!!!
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JFL, great news about your scan! How are the side effects of Navelbine? Is this tolerable? Did you lose hair on that combo? Glad to know that it worked so well for you.
Gumdoctor, it is wonderful that you have someone to stand up for you. At your next appointment, hopefully your MO will resume your treatment.
I am starting to get some neuropathy in the toes, so I don't know if my MO will suggest other options or lower the dose of Taxol. Since Taxol seems to work on my liver mets, I am hoping to get some more mileage on this.
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JFL Congratulations on your clean scan! I'm so happy this treatment combo is working wellfor you!
Grannax and Gumdoctor, good luck with your upcoming treatments.
May they find you both to be NED soon!
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JFL, so happy that you received good news. I have Navelbine on my list..thanks to Bestbirds guidance on future drugs.
I especially appreciate that are doing well with the addition of Tamoxifen!
Hope you are celebrating!
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Gumdoctor and Grannax2..looking forward to hearing good news from you both.
Thank you for posting, even when you don't feel your best during treatment.
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Hi SandiBeach -
I am definitely here and ok. But wxhausted from all the frama...Patiently waiting for treatment appt. They moved it from Thurs to Wed...
ONC is back on town. Can't wait to hear what she thinks about last week.
Gumdoctor
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Gum and Gran...hoping you both get to NED on the new treatments!!!!
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Ty. I would be happy with some sleep just now...
Gumdoctor
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Yay for JFL. Happy Dance. 💞
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JFL, Thanks for sharing your excellent news! I'm so very happy for you! I hope that the Navelbine/tamoxifen combo will continue to work for you for a long time!!!
Gumdoctor, I hope that with your oncologist back in town, the drama will decrease and your treatment will continue without further drama!!
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JFL - YAY!!!! Great news! A huge relief. Phew! Thanks so much for sharing your good news!
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Candy, Nkb, NicoleRod, S3K5, Frisky, SandiBeach, Grannax, Theresa and Thrivingmama thanks for your support!
S3K5, I have found Navelbine pretty mild and tolerable. No hair loss, 10 minute infusion and no major side effects. I have a bit of mild neuropathy but not in the league of the taxanes and it improves at the end of each cycle. I have some minor fatigue for a few days each cycle. I also get some tumor pain in my liver but it is tolerable. Some people apparently experience immediate, severe tumor pain during or right after the infusion
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JFL, I’m so happy to hear of your good scan news! And that the treatment is so tolerable. Made my day. Cheering you on.
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Cureious. Now, that's a happy dance.!!!!
Six days out from first infusion of Gem/Carb. So thankful to be on the other side. Crazy that I didn't have SE from chemo drugs, only from the added other drugs given as pre meds. UGH. Believe me, I am bombarding my MO with messages on my portal demanding reduction or elimination of all pre meds. I'm taking about antiemedics x2 and Dexamethasone. Drama, I'm so sick of drama. Unnecessary drama and pain and discomfort for patients, being treated as the dumb patient who does not know what she's talking about. UGH I m determined to be the patient who is believed for tomorrow's TX.
Watch out, chemo nurse, here I come. 💞
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what is your schedule for taking navelbine. How often, etc. my dr. Recommended gemcitabine next but I didn’t like the possible side effects listed on the papers they gave me.
I know others here are taking gemcitabine and don’t seem to be suffering from too many side effects.
But, maybe I will mention navelbine to my dr.
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Meadows, I take Navelbine weekly on a two weeks on/one week off schedule.
I honestly don’t think my results would be as good without the tamoxifen. My heterogenous tumors need to be attacked from multiple angles. My MO mentioned Piqray next. I told him I only wanted to take it in a 3-drug cocktail with Ibrance or Ribociclib and hormone therapy. He agreed that was probably a good idea and he would support it given that the safety of such combos has at least been studied.
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I don't think I am eligible for piqray although the report from the biopsy has not come back yet.
Your doctor would prescribe Ibrance again even though you have had it before
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JFL- there is an ongoing study with afinitor, Ribocycline and a hormonal going on- I wonder if it would translate to using the piqray instead of the afinitor. Lots of side effects to the piqray too, in this study they are using a lower dose of afinitor.
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Julie, very happy for your results!
Ps. Did you end up starting testosterone too or was that just a possible alternative treatment?
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