How are people with liver mets doing?
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BSandra- Happy for the NED report!!!!! Do not minimize your concerns. MBC makes us sensitive to anything not "perfect", rightfully so.
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Saulius,
Your wife's report sounds pretty good. I can fully understand your concerns about the incidental finding. As Candy said, we are all hypersensitive with MBC -- is this ache or pain something? is that shadow on a scan something? Wishing that when your wife has her next ultrasound, there is no evidence of what was seen.
Thinking good thoughts for both of you.
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Ah, thank you, you are all really something... wonderful and wise. I feel like a small child and have so many things to learn from all of you. Where else would I find such a support... thank you. Saulius
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Nicole! You look beautiful.
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Nicolerod. Love your wig. No one would ever know it was a wig. Are you wearing it to the wedding? I don't have any experience with massages but it sounds like it helped you. Whatever helps you feel better is a good thing. 💞
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Beautiful picture of the two of you. I see happiness there. I am sure the massage helped with relieving stress at a minimum. Plenty of other benefits too. Stress is an enemy to us keeping our best health and battling this disease. Keep relieving that stress.
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Thank you Katty and Saulius, Grannax!
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Thank you all for the compliments. Thanks Grannax for the compliment about the wig I am wearing it to the wedding but the girl that cut it is going to do an up do for me
Thank you so much Saulius you are literally a ray of sunshine! You never cease to make me smile!
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Nicole rod. An up-do will be perfect for the wedding. Do you know what brand/ style your wig is? Was it expensive? My hair is long (and white) if /when I need to get a wig I want it to be long. Hopefully one I can wear in a ponytail, like I do now.💞
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Grannax. Its an Ellen Willie...Illusion II.
I had that cut though to add in layers and my long angled bang... it was $1700.00. its half human hair and half synthetic...I only bought it bc my insurance will cover up to $2,000.00 for 1 wig only.
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Nicole- Your wig looks very natural. I would not have known it was a wig unless you said so. You pic is good.
I lost my hair with the 2 A/C treatments I had for what we thought was Stage 2. Then found the Stage 4. Just enough IV chemo that it took my hair--lol. I got a wig. My insurance said I had a total of $400.00 per lifetime allotted for wigs. I chose 1 that cost $150.00 at a local wig store in my town. You were fortunate to get such a lovely one on your insurance. I still have enough ($250) for another if needed thru this insurance. I wonder about Medicare. I will qualify for Medicare in a little over a year (2 years after SSD acceptance). I hope I will not need another one, but we never know with MBC.
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Thanks Candy... I will say I am starting to lose eyelashes now and eyebrows...
I just need them to hang on till the wedding The wig was very very big...and its a Petite Average...(that was the smallest) apparently I have a size Ultra Petite head they said so I had to pay like $150.00 for them to sew it smaller so there are some bulges or bumps but not that anyone can see. I will say I do prefer to just wear a hat and no wig simply because its SOOO EASY...but I do feel more like the "me before Stage 4" with the wig.
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Nicole- there is a baseball hat with hair option that I really liked, looked very natural, was really easy and not itchy like wigs were. it came in lots of different lengths and colors. I don't remember the price.
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Nkb yes I tried those on...here they were $95.00.
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I have two Ellen Wille wigs. One is long and wavy, and one is short and chic. What I really like about them is they come in petite, look natural with lace caps and the right amount of hair (not too much hair), and I can match my hair color quite well. They are synthetic. I have hair right now, but nice to know Ellen is there next time I may need her.
Grannax2, you said hello to me several pages back...Hi! 🥰.
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Always so much to gain on this thread! Feels like home😊. I'm interested in the CDK7, Keytruda for HR positive And SBRT. Thankful for all the sharing Here and potential Treatment options. I continue to pray for healing Treatment for all of us!
Nicolerod you look simply beautiful! Thanks for sharing. My son will get married this coming June and I'm with you about Mother of the bride issues.
It looks like my original biopsy(1/18) came back positive for Pi3k mutation. Surprisingly, I/F controlled the cancer for awhile. I will go over Piqray and Faslodex with my MO on Wednesday. Have my first Faslodex shots. I'm sad to move on. Really Scared about SE and my liver not responding. I'm going to bring in treatment options and local options for him to look at.0 -
Thanks nicolerod and Shetland I will look for Ellen White wig if I have a fourth loss of hair. UGH. All my other BC and MBC DX I was not on Medicare. This time I am. Ill let you know how much they will pay for a wig,Candy.
I'm not glad you have GERD but am happy it's nothing's to do with MBC. I was DX with GERD right after I finished chemo back in 2001. So, I've been on PPI for a very long time. They have really helped me and not. caused the typical SE, like bone loss, etc, a fior me. 💞
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Grannax,
I just looked it up because I am on Medicare -- traditional Medicare does NOT cover wigs, even with a prescription. Some Part C/Medicare Advantage plans may cover. That's a real bummer.
Also -- what dosage of PPI are you on? Is it prescription or over the counter? I've been on since 2015. Starting to get concerned that it may affect my liver. I tried to get off this summer, but my gastro doc said no go because I have not great things going on in my esophagus because of my GERD. It's a dilemma.
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anewbreath- changing treatmentis always a bit scary. We all get that here. sounds like you have some options. Let us know how it goes.
Dee
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Anew...thanks for the compliment... I think you meant "mother of the groom"...? Right? lol
I am so sorry to hear that you have to move on treatments but I totally get it...and hopefully this next one will work really really well.
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Well that is stupid that Medicare doesn't cover wigs. My insurance paid $400 lifetime total on wigs. I get 4 mastectomy bras a year with my insurance, but I was told Medicare covers 8 a year. So in the workforce and get 4 bras, and retired get 8. That makes sense, not. Gotta love our healthcare system.
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Bev Jen. I'm on RX Omeprazole 40mg once a day. Through the years I've been on several like Nexxium. No damage to my liver that I know of
None of my insurance previously paid anything for a wig. I really thought Medicare would. I do have Plan F that pays for deductible and other co pays, etc.
Yes, I was shocked when I found out that Medicare pays for so many bras. I think I can get three every three months. But, only pays for one prosthetic every two years. Who need 12 new bras a year? Not me. I wish they would put some of the bra money towards wig money. 💞
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Grannax,
That's the same dosage that my gastro doc currently has me on. I am going to investigate further with her and with my MO. OTC omeprazole is 20 mg.
I have Plan F too. That doesn't really change anything about the general coverage, except, as you say, the deductible is picked up.
I had no idea that Medicare pays for bras, but yes, that's a ridiculous thing about the 12 bras per year. A new one each month! The wigs would be much more useful. I still have my wig from when I was originally diagnosed in 2003 -- so I guess if if have need of one at some point, I'll see if that one can be revived.
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Health Care needs so many reforms. I did not know Medicare did not cover wigs for cancer survivors. This organization might be able to help. https://angelhairforcancer.org/ I did DYI cold capping with chemo in 2016, lost about 60% of my hair, maybe more. Never got a wig, even though my insurance allowed up to $300 for a single life-time wig. A former coworker told me that her husband had been allowed one life-time wheel chair as he became severely disabled with MS. Just as hair came back, a 3rd round of BC cropped up, and Arimidex seems to be thinning it out, drying it out. Medicare also does not cover compression garments for lymphedema, my insurance partially covers. I've been advised to stock up on supplies before I hit 65. ( 2 sleeves, 2 gloves /year, and the gloves do not last long for me). Even though I will keep my private, my therapist says that if Medicare does not cover something, neither will my insurance, even if they cover it now. I am trying to find out more about that, but it is almost impossible to get any real answers from insurance.
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Bliss- Did you have MO appt last week? How did it go?
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I kept my wig from 2010. It's short and cute but not what I really would want This time. The American Cancer Society will sometimes provide a free one. Also, big Cancer centers usually have a limited supply that they give away. There are several companies that make synthetic ones that are very reasonably priced. Sometimes, I see their magazines in the chemo waiting room. 💞
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bevjen I checked on OTC also. It was more expensive to buy than my RX price. Even at Costco.💞
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Grannax,
Yeah, I know that the OTC drugs are more expensive. I can get 3 mos. of the 40 mg for like $3 on my prescription plan.
I had a Telehealth visit with your favorite MO today -- Massimo Cristofanilli at Northwestern! I love him -- such a nice, caring, and intelligent man. I wish I lived in Chicago so I could see him there in person. I have recently gotten back a blood biopsy and a CTC report, and he is expert in those, so my MO wanted me to have a visit with him to discuss. He had some great info and now I've passed that along to my MO at Hopkins.
Interestingly, although I seem to have a new lesion, he was not in favor of local treatment right now. Suggested switching treatment instead.
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Bev Jen Dr C is my favorite MO of all time, thank you for remembering. I Saw him at MDA in 2000. I don't know if he would remember me. I'm so glad you can consult with him .
Did he make a suggestion as to what TX to change to? 💞
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Grannax,
Well, the molecular tumor board at Hopkins had already come up with a path forward for me when something changed. Clearly, something has because I have a new liver lesion. Dr. C thought all of the options from the tumor board were good ones, but he changed up the order based upon my blood biopsy and CTC report. He also wanted me to get a new tissue biopsy if possible to see what's going on with my HER2 status in particular, because there were a few weird things on the CTC report and the blood biopsy. But he has suggested that I go with neratinib and faslodex -- I am lobular, and he said that they've had good success with that drug and his lobular patients at Northwestern. My MO at Hopkins wants to go with Piqray, I think. I am having a Telehealth visit with my IR this afternoon, and we'll see what he says. The bad thing is that no one wants to play whack-a-mole with me at this point. So I am very conflicted.
To be determined....
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