How are people with liver mets doing?
Comments
-
Nicole,
When you call Express Scripts, I hope you are punting it upstairs for attention. I also have them but as my Medicare Part D plan. When I was on Ibrance, they were very good in filling it promptly. But I am a big believer in asking for a supervisor every time I get in a customer service problem like this, and it usually works. I believe that they are the largest mail order pharmaceutical company in the US, and they should do better.
Additionally, your MO's office should be able to expedite an order. I'm not sure why it should take 2 weeks to get drugs.
You should think about Saulius's suggestion or calling your palliative team. You do sound pretty down and defeated, and someone could perhaps help you out.
0 -
Dear Nicole, we were not even thinking debating "the going" with you because... you ain't going anywhere and staying with us. Remember - just one drug is needed to hit it and you'll feel way better. Now, if you can, please be kind to yourself, ask for help.. Another option could be CBD for you to feel better but they are expensive (yet effective for some people). Saulius
0 -
Dear Nicole, somebody needs a big kick up the b*#* regards your meds, [ i am sure a few here would be willing to do the deed on your behalf]. None of us need extra stress that can push us into negative thoughts and I hope there is someone in your care team that can help lift your spirits. As for the pain , are you taking opiods/ morhine? Here in UK I have been given slow release morphine taken twice a day in tablet form , to keep pain at bay. I also have a liquid morphine taken as and when needed if breakthrough pain gets the better of me, [ i do not need this much, but it did help recently when I unintentially bottom bounced down a few stairs]. Holding your hand from afar.
0 -
Ok...Bev..yes every single time I or my Doctors office called we requested a supervisor...
It looks like the meds shipped thank GOD
Saulius..that was cute what you said thank you. I have done CBD it did nothing for me and made me nauseous... my cancer therapist says that everything I am feeling is totally normal for this disease. She deals pretty exclusively with Stage 4... I don't want to add any more meds into the mix right now. I do feel better today...yesterday and the day before very bad days something specific happened and just really upset me. I feel a little better now.
Denny thank you so much. I am not in that much pain that I need meds yet THANK GOD..but its just that the pain is consistant now..but not bad in terms like its not a 7 -10...its more like a 4-5...
0 -
Sadiesservant- Any news on your scan results?
0 -
Bliss, I have been thinking of you and hoping that you are comfortable and are being well taken care of I am sending you a virtual (((hug))).
Hugs and prayers from, Lynne
0 -
Nothing yet Candy. It looks like it has been reported but no word from my MO which may mean he is either away or the news may not be the best. I have an appointment with him on Tuesday so he may prefer to speak to me directly rather than sending me an email.
There are still a couple of hours left in the day and he has been known to reach out to me on Sunday (his quiet time for paperwork). Bit worrisome of course as I’ve not been feeling super. Sigh...
0 -
Sadiesservant- Waiting with you.
Bliss- Hugs.
0 -
Did anyone see Moomala? She hasn't been here since Aug
0 -
Dear Nicole, ah, yes, I forgot you tried CBD. Did not want to urge you use anything particular - just want you to feel better. Pheeew, drugs will arrive, thanks god!
Dear Bliss, we're hugging you. Please hold on, things have to get better!
Saulius
0 -
Not heard from Moomala. How about JFL? And Bliss, how are you my friend?
0 -
Hi. Need collective wisdom from liver folks.
I have widespread liver progression, largest met 10 cm. Xeloda was great for 16 cycles. ( Per PETCT.
I have 2 choices: (1) chemo or (2) Y90 only if I can find a trial that allows recent radiation.
Bx is being scheduled. Any advice on chemo would be helpful. I had AC at dx.
Any tips searching for trials also helpful.
I feel numb, I know it is my reality, but still hard to accept.
0 -
I am confused why do you need Y90 from a trial???
I would get the Y90 then do chemo....consult with an IR....this way you are already off meds now so they wont have to take you off for the Y90 then in 2 weeks you would start chemo...
0 -
Hi NR, I spoke with my IR. He said he would do the Y90, but if I was looking at a trial, he did not want me excluded due to Y90 or have a long wash out period.
My MO said I would have a 30% response to chemo.
0 -
Sandi- I am no expert on Y90 or the local treatments, as I have not done them. But I was reading up on them in case that was in my future. I thought they could not do local treatments on that big of a lesion. That they could not be over 3cm or so. 10cm is quite large. Mine was 8cm at diagnosis. Size of a baseball.
I would want to hit it hard at that size. Shrink it down fast.
Sounds like you have contacted IR and they can do Y90. And that chemo would be a 30% response?
Sounds like Y90 then.
0 -
Unless you got a good Stage 2 or 3 trial...I would do the Y90...that can buy you a WHOLE LOT OF TIME....
0 -
Sandy, if Y-90 is not an option, I would try taxol. After my first three months on it I had a very dramatic response. Other than the neuropathy, I have found it to be very tolerable. I believe that the severity of my neuropathy is because I didn't start icing my hands and feet until a few months in.
I am so sorry for your sobering news and am thinking of you.
0 -
Sandi, that's a difficult report to absorb. So sorry. I hope you and MO, IR can come up with a reasonable TX plan. Keep us posted. Thinking of you every day.
0 -
Sandi, Sending you warm thoughts of support as you make decisions. I hope the Y90 or chemo provide a good blast to that new lesion.
I'm just wondering if those who get MRIs for liver monitoring have ever been told to get Evoist contrast? Apparently it gives better images. (?) My December report was very unhelpful and said “recommend next scan using Evoist contrast". It was used on my May MRI, but now for September it wasn't noted and I wonder if I need to push for it or not. Also, does anyone else have trouble completing the breath holds?
0 -
Rosie- I get MRI's every 3 months. My MO says they are better than CT's or PET's for the liver. She says the MRI's see more than the CT's---and for me that was true. The CT said 2 lesions and the MRI found a total of 4 lesions. And she said that PET's are not as good for monitoring the liver since the liver takes up the glucose of the PET and the images are blurry.
I checked the patient portal records and they show I get the Eovist contrast with the MRI's. I did not ask for them, that is how they were ordered.
Yes, sometimes it is hard to get the good deep breaths and to hold them. For the most part, I do ok. But some of the breaths are not as good as some of the others.
0 -
Good to know you get that contrast too, Candy. I’m waiting for MO’s nurse to check on how to order the specific contrast. It seems not all of the locations in my hospital system have it on hand.
0 -
hi sandi- so sorry to hear the news. it really sucks. my mom has a similar situation with a 10cm met and a few others in liver and pretty rapid progression. she's doing doxil now but also has an appt to see an IR who said they would be able to help with the liver. i'd look into that for sure!
0 -
Phew... just spoke to my MO and the news is good. CT scan shows that the Xeloda further reduced the liver mets. Everything else stable. Yeah!
0 -
Sadiesservant- Yay for reduction of those nasty liver mets!!!
0 -
Great news, Sadie!
0 -
WOOHOO SADIESSERVANT!!!!!!
0 -
Sandi, Don't forget about the ADCs, Trodelvy, Enhertu et al- PSF was around 16 months, meaning half went longer...
0 -
Sadie so happy for you!!!!!
0 -
So happy for you Sadie! Yay!
0 -
Great news, Sadiesservant! I am chuckling at some of the (very kind) congratulations addressed to Sadie, because I know Sadie is the doggie, and you are her servant.
0
