How are people with liver mets doing?
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Gosh Darn SP!!!!!! UGHHHHH I am so sorry to hear this
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Thanks, everyone. I really needed to read exactly what all of you said.
I know the loss of control and in put is a huge part of what I’m feeling. Also, I’m a planner Guess what, I don’t think I get to be a planner anymore and the control and input is out the window. It’s a mind blower.
I did, however, already tell them that the fourth trial they mentioned I am not interested in at all. It was for Taxotere and some new drug combined. I had so much pain with Taxotere back in 2001 plus the high dose dexamethazone they gave me caused my whole body to turn red. It was an horrific experience for me. I’m not about to say yes to that trial.
I only live 30 minutes away from the facility, so that’s doable. For the long days, I will need someone to take me and stay with me. Or maybe two people can share those long days. For the short lab days I can take myself.
Yes, I’m thinking this is going to be my full-time job. Especially, the last one I described to you. The schedule is not only intense but each week it changes in regard to which days are lab days. The first week I only have one day that I won’t have to be there. Ugh
My sister will come down for a week once I actually start whichever trial, of the three they decide on for me My daughter will do as much as she can. I have three close friends who will also help unless there are conflicts.
They say they will give me a calendar with the days I have to be there and for how many hours on each of those days.
November and December holidays are going to complicate things even more.
Shetland, I’m so sorry to hear about your colon. Keep us posted.
I’ve read the info on each trial. My science BFF came over today and helped me to understand some words and the process about how each trial would work. That helped a lot. I think I’m as prepared as I can possibly be.
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Grannax- Praying for you that this trial will be easy and you will do well with it and have stable disease.
That is another aspect about me and trials in my future. I am alone in this MBC journey. So if I would need to travel to appointments (2 hour drive one way for me) and have multiple appointments, I don't know how I would do that. This alone thing sucks. I have been reading another Thread about others that are having to do MBC alone. So it has me thinking about being alone. I wonder if that will limit my options going forward. I will just have to see. But scary thinking about it.
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Shetland. So sorry to hear about the colon. Don’t beat yourself up regardless. As your MO said, they don’t typically do colonoscopy on MBC patients. Sending healing thoughts your way!
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Grannax will sound like a very stupid question given what’s going on, but do you knit? I’ve found doing knitting whilst spending bloody hateful and stressful hours waiting in hospital really helps to keep me calmer and focussed. You also end up with something useable!
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Shetland Pony, Thanks for sharing what’s been happening with you. I admire your persistence in getting to the bottom of the tumor marker rises. I hope the colonoscopy and biopsy yield some useful info for treatment. Like Denny, I too thought my frequent MRIs were enough to monitor my colon. I’ve only had one colonoscopy in my early 50s, 62 now. I had no idea they were no longer done once we hav MBC.
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I am sorry to hear about that Shetland. I hope you can get some clear answers, fast. You are in my prayers.
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Shetland- I feel so much for you. I hope it is easily treated. Please do not blame yourself. It's not your fault. Cancer makes us want to blame ourselves. “ I didn't do my self exams, I missed my yearly mammogram by 5 months, I didn't eat right or exercise enough." These are a few of the voices that plagued me. But I now refuse to go backward but look forward to beating this, living each day as a gift. You can focus on getting through this. Find joy where ever you can! 🦋
Nicole- I have nighttime neuropathy in my feet and legs that is not so much pain but burning, restless and very uncomfortable. I hope you can get help quickly. You are suffering so much and need a break from the SE. Hang on sweetie- you never know what is around the corner or how the next day will bring a breakthrough😇
Grannax- a clinical trial can be a full time job at first. They can also be flexible, because they want you. I was allowed to miss one appointment to have my birthday getaway. Also, my clinic searched 3 trials for me and needed answers before starting- I wonder if that is some kind of protocol. You can do this 🙌🏻
Plan and scan for me in the morning. I will let you all know. Fighting scanxiety. 🥴
Dee
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SP-
So sorry! I still hope it is. It breast cancer. I don’t know if colon cancer is any easier to treat.
Karen- my mother did some wonderful knitting in her time. Some companies are encouraging people to knit during meetings to help anxiety. I had a partner at work who seemed to express her anger and frustration in meetings through her knitting. Clack
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Denny, LFF, Grannax2, SS, Rosie, Husband11, Dee, Nkb, candy, and Nicole -- thank you all for your support and kind words. They have really helped me feel better today.
Sending my good wishes to all who are struggling. We do have a rough road to travel.
Karen, I like your very British solution to anxiety: Knit! A cup of tea for sadness, knitting for anxiety. Love it.
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grannex- call the American Cancer society. Ask them for help so you aren’t do alone in this process. If they can’t help, they most likely know someone who can.
Wish I were closer to be able to hrlp.
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Thanks LFF. I wish I could meet you someday.
I do have a little cross stitch project that I could take with me.
I’m just waiting for the phone call today to see if the nurse has heard from the sponsors
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Dee, what is the name/ numbers, etc of the trial you’re on? Do you know the name of the pharmaceutical company ( sponsor)
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Hi All,
Reaching out to see if anyone has experienced issues with their port. There always seems to be something with me. Sigh...
The PowerPort placement went well and I am healing nicely (it will be two weeks since it was put in tomorrow). I had my first infusion with it on Friday and it worked like a dream. However, I noticed a bit of a rash on one side of my chest by the port last week. Well, this has now worsened to be a large rashy patch with raised bumps extending from the port towards my sternum. It's a bit itchy but I have been very good about avoiding scratching. Have any of you seen anything like this? It seems like an allergic reaction. I'm not sure if it's something to be concerned about or if it will resolve on its own. My biggest worry is potential infection if these "bumps" open up as my neutrophils were only 1 on Thursday last week (they dose reduced so that I could have chemo on schedule). Anyone?
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Sadiesservant, I had reactions like this from the dressings, esp if the tegaderm was applied before the skin prep has fully dried. I now have them be sure to let it fully dry (which they're supposed to anyway because it's not actually effective until it fully dries...and they shouldn't blow or wave over it to hurry it up) and we use IV3000 dressings instead of tegaderm.
fwiw, I'd call it in to the symptoms nurse and ask if you can hit it with some hydrocortisone cream. That's how I treated mine before we figured out how to prevent it.
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I think that's what it is but now the nurse at the Agency thinks it might be shingles. Good grief! So now I need to go to my GP's office for him to look at it. (Initially they asked for a photo, at which point I sent him a lovely picture of my chest... and no that bump is not my breast! LOL). Now he wants to see me in person. This cancer thing is a full time job!
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crossposting to clinical trials
I’m off the Arv-471 trial due to progression in the liver- “several new hepatic lesions”. But no location or size on the report !!! 😤 stupid radiologist. SCRI PA let this slip too. 😡.
I was able to get in to see my home MO today (I know I am so blessed) and he actually looked at the images and had trouble finding the lesions on my latest scan, so they are small. I am asking for Sarah Cannon to get an addendum with the missing specifics.
It was a good 11 month ride with manageable SE so I recommend it to anyone with strong er+ that can qualify. I was on single agent.
SCRI wants to get me in the OP-1250 CERAN trial next. That is a great next step. However, since the original tumors were still mostly stable, and new lesions showed up, they want a biopsy and TEMPUS to make sure I am still er+ and look for any new mutations to target. Scheduling is an issue because I am driving to Iowa for my step moms funeral this weekend. I want to have the biopsy at home. I’m on a blood thinner so i am stopping that in hopes for a biopsy on Wednesday or Thursday this week or it will have to wait until middle of next week.
Ugh! The new trial is a 4 week wash, Tempus takes at least 3 weeks, we don’t have the complete scan data for IR, will the new lesions even big enough to biopsy, my BP was 168/92 from the frustration and anxiety, etc etc etc. 😵💫
The good news is my wonderful home MO 😇 was so compassionate. He asked about me and how I was doing before the report today. He wants a follow up in 2 weeks just to check on me while I wait. He said my liver does not look much different from the June scan. We want to get on top of this progression, but my liver enzymes are perfect so it is not emergency level, but he understands and supports the urgency.
I am resisting researching other next steps in case I don’t get in the OP-1250. 🙏🏻 for everything to work out and I don’t have to be off treatment too long. I’m thankful for trials that give us access to new drugs.
Dee 🦋
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Dee,
Oh, I am so sorry to hear this, especially since you are such a trooper with everything you have gone through. But it sounds like you have a good attitude about the whole thing, and are moving right on with your next plan, with the support of your home MO. That's really good.
Hope the timing works out with the funeral and the biopsy, etc., as well as with the biopsy and Tempus results. Fingers crossed that all goes well with that.
We are here for you.
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Dee, so sorry about the progression and being off the trial. I have no experience with clinical trials of drug combos (I was on a radiation trial in 2001) but can imagine how stressful the wash out period must be. I’m anxious waiting to see if my chemo is working so mets with no treatment must be horrible. Sending positive thoughts your way.
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Moth, thanks for your response. The penny dropped when I read it a second time as the whole issue of the “dressing” confused me as I don’t have a dressing. My GP does not believe it’s Shingles, thank goodness and suggested hydrocortisone. Your description of blowing on it and waving things to dry the alcohol before applying the tegaderm is exactly what the nurse did. (She also donned gloves then proceeded to touch everything including a garbage can but I tried to remind myself that the tegaderm was on at that point.
So, I let them know that I am safe to go for chemo on Friday and will discuss further today. My big concern was possible heparin allergies.
Thanks again
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I keep trying to post and it keeps getting lost in space! Abbreviated version-
Thanks everyone- I am much calmer now that more ducks are in a row. Biopsy on Thursday then off to Iowa for my step mom's funeral. One week for er/pr/her2 to come back. Only 3 spots open on CERAN study and they can't hold them
🤞🏻I get a spot
Dee
Hoping for the best results for everyone here. I will keep reading posts while I am out.
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So I may be losing all health insurance... my husband may be getting out of the military and we will have no insurance nothing.......can anyone tell me how it works what I do to apply for I guess ...is it Medicaid?? I just never have been in this situation so if someone could point me in the right direction it would be much appreciated.
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Nicole- Do you have an insurance person you can work with? I know you said you had military insurance, and I don't know anything about that, but do you have a local insurance person for your house or vehicle insurance you can talk to about health insurance? Also, you can go online for the Marketplace (Obamacare). I have that now. Took it after COBRA coverage ended July 1. Healthcare.gov. is the website. You put in your State and zip code and it directs you to the plans available in your area. Also, your cancer center may have someone that can guide you too.
PM me if you need to. I will try to help you.
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fingers crossed Dee !
Wish I had answers Nicole , but I’m in Canada. Hopefully someone can jump In and offer direction.
Going through it here ourselves. The health care system is going through a ransomeware attack in my part of the provinceand basically only emergency services are going ahead. I am due for bloodwork and MO visit weds to go ahead with my second cycle of Ibrance . Also my third loading dose of fulvestrant is Friday. Something tells me I’m delayed atleast a week. But the news is reporting weeks or months. But they need to figure out how cancer care is going to work because I’m not surely not the only one delayed.
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Candy...I have no insurance person to work with and we will be moving out of this state so my cancer center will not be of help...we will be moving to TN (I think)..... I don't think we can afford obamacare with no jobs....so thats why I am wondering if Medicaid or Medicare would cover me???
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Dee,
Congratulations on getting one of the CERAN spots! Is it the OP-1250? They are right across the bridge from us but there isn't any site here. I wrote to the study coordinator to see if there were any plans to open up a Northern California site but she never wrote back.
Hugs, Susan
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So my scans on Monday showed I have progression in my lungs and liver. The biggest of my liver tumors has more than doubled in size to 3.1x1.9 and perhaps even worse, now I have multiple small lesions instead of just two larger ones. I'm feeling so scared and anxious. One bright spot is that today my bloodwork was all good and my vitals including oxygen saturation were normal. I was supposed to start Cycle 4 of Gem/Carbo but instead switched to Halaven. Glad they were able to push through the authorization for the switch in half a day. Starting Mirtazapine to help me sleep (I haven't slept much for the past week) and to help with anxiety (my anxiety is through the roof).
Is anyone else on Mirtazapine? I had hoped to never get on an antidepressant but I don't know how else I can deal with this.
- Susan
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Susan, sorry to read of your progression. What a kick in the gut. It's good that you're feeling well tho & I hope that halaven is good to you.
The antidepressant sounds like a very good intervention now. Hope it kicks in quickly & I hope you get some good sleep.
Nicole, sorry you're having insurance troubles. What a headache..
BAP, these ransomware attacks are scary. I hope they figure something out asap for you.
I got my cast off today. Otherwise nothing new for me. Labs tomorrow, chemo & immunotherapy this Thursday and Friday..
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Susan- I’m thinking of you - don’t know anything about mirtazapine- do know about anxiety though. I hope it kicks in quickly. I have used a bit of Ativan from time to time. I’m glad your insurance let you change therapies so quickly.
Hugs
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I had a similar reaction near my port and it was decided I am allergic to the dressing tape adhesive and they have to use a cotton or different tape. Be
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