How are people with liver mets doing?
Comments
-
leftfootforward it is frustrating that the insurance would deny something that was working. Were you on Taxol or some other newer regimen? I hope they resolve this approval process quickly.
I had a 3 week break in my chemo due to cellulitis in my feet. My onco was not worried.
I have always wondered if a chemo break was okay or does it put patients at risk of progression, specially for those with soft organ mets. I have heard that bone mets are slower growing so a month or two gap is okay.
Anyone has any experience with chemo breaks and how long is too long?
0 -
S3K5. It's been 3 weeks for me. But it's just because of low ANC.
Does anyone have occasional right side under ribs pain or discomfort? I do and think it's from my liver mets. My friend, who does not have MBC, says that it can't be from my liver because liver does not have pain receptors. That made me mad. Isn't all the time and it's sometimes positional. If I lay on it while sleeping it wakes me up at night.
I know I've heard others say the same pain, discomfort has happened to them. Speak up ladies. I need some support.💞
0 -
Grannax,
I would guarantee that that's your liver. When I had my microwave ablation in July, that area hurt like hell for about 3 weeks. I couldn't lay on my right side, and even when I laid on my left, I would feel that area just hanging there. Now, I do have occasional right side discomfort. So I think you're right on the money.
0 -
Thanks Bev Jen. I hate it when friends who don't have clue try to preach to us about what is and is not true!!!!! She is true friend and a scientist but she's out of her element here.💞
0 -
Ok ..very overwhelmed right now. Just met with the Interventional Radiologist..he said I would be good for surgery to remove the tumors or for the cryoblation..but the cryo would need to be done now while the tumors are 2cm - 3cm once they reach 4cm they cant do cryoblation. Hes only seeing 3 tumors not 4 he sees 2 hemangiomas....he needs to talk to my oncologist to see what would be best depending on what treatment she wants to do. He also said there isn't much down time with cryo...and he can do it while on chemo and that he can get a biopsy of tumor if he does the cryo. He knows my appt is tomorrow with the oncologist at 1pm he is going to try and talk to her before that. He did say that 1 of the tumors is in an area that there would be a 10% he cannot reach it with cryo..its down like towards the bottom of my rib cage (that is where I always have the pain) I asked about surgery and ya know when the part of the liver grows back with cancer cells more tumors pop up..he said the area they would be taking is so small it will not even grow back. He said that occurs with bigger tumors/area. With surgery he said they can get all the tumors.
We are very overwhelmed and were not expecting this...we thought he was going to say get stable first. I would love for those of you that pray to please pray for my husband and I and my doctors. We want what ever God decides...please pray that the Lord opens the door to the correct procedure and gives the doctors a clear leading on what is best for me.
I will update tomorrow after we see oncologist and cross post in liver procedures.
0 -
Nicole- Praying.
0 -
got the MOs office to expedite the reaporoved for taxol.
I basically said I have fought for 9 years and I’m not dying because you don’t see an urgency to get the paperwork done. That worked.
My husband called insurance and found out MO didn’t write why I needed this medicine. Ummm I would have thought that would be thing number one in the appeal. Grr. .Th g HH eh are calling to get that information.
Might have a light at the end of the tunnel.
If only everyone spent 1 day in our shoes. This shit wouldn’t happen.
0 -
Thank you all for your prayers! I felt like God was sitting right here with me as I read all your comments to me..wow that is so beautiful. I seriously consider you all my dearest friends...and even though we all may not agree all the time I know that we ALL love each other and are all fighting this TOGETHER!!!! The proof of that is in all of the comments, prayers and well wishes we all give to each other!
I just want to say I am grateful to ALL OF YOU and you will all be in our pocket today at the appointment.
Crossposting so all can see
0 -
Checking in on the lovely liver mets tribe.....I’m praying for all of us, our loved ones and our MO treatment teams! That we can find good answers to our treatments worries and options when needed. That we maintain hope even when it’s hard and we can feel hope when we log in here. That our MO and insurance companies will be more opened minded with our unfair situation!
GrannX- Carbo alway hit my ANC. Felt like I was on treatment break more then on. You are doing great considering all that you have been through lately. Hang in there. Also, my liver masses would rub against the liver lining and cause pain.
Nicole- so glad to read the options you have been given! What everyone wants to hear🙏 Your strength and courage is obvious.
Always praying 🙏 🙏
0 -
Nicole,
Praying for you, your family, and for your doctors.
0 -
Anewbreath- Thank you. I needed your words.
0 -
EDIT: Dr. Just called me see bottom
I just got back. Wow..another great appointment with her. Thank you for all the prayers!!!! So surgery is out. She spoke to the IR and they agreed that Cryo would be best also because she wants the biopsy she said she needs to make sure I have not mutated to HER2+ or TNBC.....that was hard to hear...not gonna lie..my heart sank. Lot's of info though ..so here we go.
They spoke about Immunotherapy with the Cryo..there is a trial that is FDA approved for TNBC its Atezolizumab -(Tecentriq) you must be TNBC or have the gene PDL1. Turns out on my first Foundation One I did have the PDL1...but that alone wouldn't get me into the trial. (she also mentioned that many people that are HER2- have that PDL1 and it does NOT mean they have mutated to TNBC) however, if my status has GOD FORBID changed to TNBC then I could get in the trial and I probably could even if I am not TNBC with some finagling (she said) since I have that gene. BUT...it can take weeks or month or more to get into it and we cannot wait for that. She wants to start chemo asap. She will wait until after the cryo IF he can do that within 2 weeks...but if he can't get me in for a month or something then we will start now. If we start chemo before biopsy we will do Xeolda but said next line will be a Taxane...
Scared.For those "cure-ious" that have mentioned about possible ESR1 mutation..she said nope not likely because faslodex works on that and I was on Faslodex. She said that the fact that I didn't respond to Ibrance/Faslodex etc...tells her I am endocrine insensitive
;( again I am seeing TNBC... Praying I am wrong.She is going to try and speak to the IR today or Monday and let me know what he says. She also wants me to get a consult to have ovaries out...she checked my hormones and feels my overies are still trying to and are possibly making estrogen..she wants to switch next month from Lupron to ughhh I forgot the name of it....???
Some positives...: 1. Now that I am off Ibrance my blood pressure is high again..so I jumped in ladies and asked if she would prescribe a blood pressure med....she said YES!!!! Lasinapril?....any indications I should know about?
2. I figured since I jumped in why not just go for it and asked for Metformin.....she said YES!!!!!
3. Drum Roll please... I figured ok I got nothing to lose so I asked how she felt about me getting IV Vit C on the weeks off of chemo...she said "I wont tell you, you can't...but I don't know that it will help...so if you want to do it on your own ok"...
So Yippy...now ...just praying my body cooperates ....*smirk*
Saulius...I think the ALA is working my bilirubin was 1.4!!!! She actually said my liver numbers look GREAT! So thats it...wait and see now.
She just called me IR wants to do cryo next week!!! We will got biopsy then. AMEN!!! Thank you Lord
0 -
Nicole, That all sounds very good, this new doc is clearly on top of things. Just remember that, in most cases, endocrine resistant does NOT mean the cancer has mutated to triple negative! The cancer that is growing now and causing the problems is for sure mutated from the original metastatic cancer, and she is right to want to get a biopsy to figure out what changed. It could be high levels of active PI3K, for example, which would mean Piqray and Faslodex would be a good option. FGFR1 could be taking over, CDK2 could be high, etc. If it changed subtype to HER2-positive, that would be a great thing, as it would open so many effective drugs. If it has mutated to TNBC, then immunotherapy and chemo combo.
Hopefully the biopsy is possible and directs the best course, but great to know she plans to get you to stable ASAP!!!
0 -
Hi Nicole, I wasnt sure if you mentioned you have FGFR. If you do there's recent literature which advocates Afinitor for people with the mutation. Im an example of someone with an FGFR mutation that stayed NED For 3 years on afinitor. I didnt respond to Ibrance/Letrozole (FGFR1 seems to attenuate response to CDK4/6 also, sigh) . Havent tried Faslodex yet.
0 -
hello ladies,
So i met with my ONC today and we decided to go with surgery. But at the same she is still recommending me to do the chemo plus immuneotherapy. I do not want to do it but my onc says that since mine is aggressive TNBC she wants me to think about that option as well. Its a clinical trial so i have to get qualify in order to get the chemo treatments as well.
Has anyone of you had same experience or situation? Can anyone of you please share .
-Thank you
0 -
Thanks Cure-ious!!
Ann...not sure if I have that...I will have to check.
JUST went to MYCHART...got a date for procedure...lol
Oct 28th 1 week from Monday
0 -
Thanks anewbreath. I did find out that once low ANC starts, my MO orders Neulasta onboard patch after each chemo. 💞
0 -
NicoleRod- Just reading your post. Wow, girl, you have a plan. Good to have a plan. Will be praying for the 28th. Sounds like you have a wonderful MO. Very knowledgeable and great that she is open to your suggestions- BP med, Metformin, and Vit C. Sounds like you had a good discussion with her. Good communication. BP med- Lisinopril- may cause a dry cough. You mentioned IV Vit C and she said "you can do on your own" ??? IV so will have to be ordered my an MD and given in clinical setting so is she going to order it ???
0 -
Ummm I do not think she has to order it...a naturopath can order it as long as you have something stating your MO knows your are doing it.(that is my understanding).
I heard about the dry cough....we had a friend over last night that said he had that but it only lasted about 4 weeks then died down. Now he nearly ever coughs..I am hoping that will be me...but who knows...I do not know what the alternatives could be that are not ACE? I am open to hearing if anyone knows.
I heard metformin can cause bad diarrhea and someone even said their sweat smelled like that??>>>EWWW and that they had to switch to metformin ER because of it???? I asked the pharmacist about it and my friend that is a nurse she said she never heard of sweat smelling like poop....?? I thought that was odd. I am only taking that 1 x a day though because I am taking the Berberine...1 x a day...
0 -
nicol, my metformin is metformin er ( extended release) from get go ( I guess it is for the action to be sustained instead of sugar going up and down)
0 -
I just got the script its not ER...so I will have to wait and see how I do
0 -
Nicole, that's all great news and your new MO sounds like a dream! I have a new MO, too, who I like very much and I'm glad to have a treament plan again. I start on Xeloda tomorrow!
For what it's worth, I am also endocrine resistant now, but a biopsy showed no obvious change.
Katty
0 -
Hi. Just finished my quarterly scans. This time just the CT and bone scans. No new mets, so that is good. My liver mets continue to shrink..they could be dead, deadish or inactive. I am good either way.
Regarding using my port for contrast dye:
In 2016, I had a nonpower port (mediport) implanted. Around 2018, the hospital now ONLY uses power ports. What does that mean? It means my current port is good for chemo, bone scans and monthly lab draws. It cannot be used for MRI and CT contrast as the port needs to withstand the quick high volume push.
What was explained to me was the purpose of a port is for chemo, it is just a great extra benefit to use for labs and contrast dyes. So a port would never be implanted just for scan purposes.
So I have an IV started every 3 months for the contrasts. Yes, I could ask for the newer slim power port, but there is risk of infection with this procedure and no guarantees it would be as comfortable. Plus with Ibrance...low white counts is the normal.
So just a heads up for newbies..make sure you get the power port.
0 -
SandiBeach -
Ditto what you said. I just had a new one put in in July 2019. And they did a power port. When they were able to use it for scan contrasts soon after, I was THRILLED. Finally...something went my way for a change.
Gumdoctor
0 -
Sandibeach- Yippee for Excellent Scans!!!
0 -
Grannax- In your pocket tomorrow for your PET.
0 -
Grannax with you lady!!!!!!! (((((((hugs))))))
0 -
Hi
Everyone. Ive taken a turn for the worse. I guess.
My liver is showing progression.
Both Halaven and Gemzar only allowed my markers to go up. And Mets to progress. I feel no one is trying for me . I'm at a top institute.
Now Adrianmyicin and ablation. Which I was told was not a option when orginally was seen in June.
I want someone who can offer a different treatment. Chemo does not work and has never worked.
0 -
Funthing,
Where are you being seen? I'd think about requesting a biopsy and then a genomic test to find out what could work for you. Could your cancer have mutated? That might be why certain treatments are not working.
0 -
Funthing, I agree with BevJen. If you can’t get a tissue biopsy can you get a liquid biopsy? I’m thinking they could add a targeted treatment to chemo if there is a targetable mutation in the cancer. For example neratinib for ERBB2, a PARP inhibitor for BRCA, drug for PIK3CA etc. Also Keytruda for MSI.
Hey, Liver metsters. I’ve been feeling down lately and not posting. I seem to have moved to a new phase. In the past it was scan, treat, repeat; manage side effects; live with fatigue. But now the cancer is messing with the workings of my body. And I am caught up in a complication that is keeping me off chemo. I got a painful liver abscess and am on a month of IV antibiotics and no chemo. Meanwhile, the cancer that caused the bile duct stricture has grown, so instead of getting my stent removed this week, I will probably get two new stents. Plus biopsies. All under general anesthesia endoscopy. Stents promote infection, but I need the stent until the cancer shrinks, but I can’t do chemo to shrink the cancer if I have an infection. See the catch-22?
So I am feeling kind of depressed, losing hope that I can make it many more years. I haven’t been able to go to dance and yoga — too tired, accessed port, too depressed, no ride etc. I have been in the hospital four times. And I often have abdominal discomfort. My only escape is binge-watching shows. Before this bile duct stuff showed up I was making progress on making and keeping my house and garden nice, which is all I really want. But even that is too much to ask, it seems.
So there’s some honesty.
0
