How are people with liver mets doing?
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Even a regular band aid caused me to break out in a rash around my port and I never get rashes and don’t have particularly sensitive skin. They use a gauze pad and lightly press it to my skin with paper tape. Once I was in a hurry and didn’t pay attention until I got home and noticed there was a band aid! I quickly pulled it off but too late. The rash was already apparent. There must be something that makes the skin around a port more sensitive.
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Thsnks all. I think you are all correct, it’s an allergic reaction to the dressing. It’s a much larger area today but I feel like the itching is starting to ease. The bumps feel awful however, making it hard not to fuss with it. 🙄
Susan, so sorry about the progression. You continue to be an inspiration to me. You’ve gone through so much and keep putting on your game face for the next treatment. Glad you were able to make a switch quickly. Halaven is likely my next stop if Vinorelbine fails me. Sending positive thoughts your way to beat those liver mets back. Hugs.
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Edited for name correction -----
Reading along - so sorry to hear of the struggles some are having.
Grannax and Dee - hoping the new trials are exactly what you need
ShetlandPony- you have a great working relationship with your MO. Sorry about the new cancer location. Let go of any guilt. We're all doing the best, and the most, we can do.
Susan - so sorry about your progression. The anxiety is completely understandable- I hope the new meds help you rest.
Nicole - I sent you a PM. Hopefully, you will find a good solution.
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Susan - I'm sorry about your progression and thinking of you. I am on Mirtazapine prescribed for my lack of appetite. From what I understand it's pretty mild depending on your dosage. My doctor said it would help me sleep. I haven’t noticed but have always been a good sleeper, maybe it’s easier to sleep before scans now.I will say that it doesn't stop my general scanxiety or occasional sadness from MBC. Most of the time I’m in pretty good spirits, not sure if it’s the meds or just trying to enjoy every minute I can now.
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Susan- I take Trezoderm every night to help me sleep. I hope the meds can help you get done rest. Glad you already have a new treatment regimen. So sorry for the progression.
Many hugs
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Nicole- my husband, who is an WR doc who knows all about medical insurance from the inside out says Medicare SSI if you are considered disabled ( I’m sure you are and your current medical tesm can speak to that) or state exchange ( if you don’t qualify for Medicaid because of low income).
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AlabamaDee, what a lot of coordinating you do. Everything crossed that you get a spot on that trial.
B-A-P oh, no. As if covid wasn't enough. The night I needed emergency fluids and electrolytes (which Leftfootforward and her DH pointed out to me!) my cancer center's computers were down. First I went to a local ER because the phone nurse said to go to the nearest but it was nuts there. So we headed to cancer center, phoning on the way. But their computer system had just gone down said they could to nothing for me and referred me to a community hospital where I finally got help. But that was just one night! They will have to figure out how to keep treating people.
NIcole, that is scary. I wonder if there is an insurance broker in your new state who can help you sort through options.
Susan, I hate this cancer game we are forced to play. Smart move getting something to help with anxiety and insomnia. Sending a big hug, if you'll allow me.
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SS, yes dressing or cleansing agent. The skin around my port got more sensitive with time. My nurse can no longer use chlorhexidine to clean the area (sub betadine) and only the IV3000 sensitive skin dressing is ok. The blood draw place always has betadine, but I carry some betadine swabs to save nurses in other places from having to go hunt for some. Today I was able to produce them when needed for port access in outpatient surgery and the nurse was surprised and grateful.
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Now for today's report on the colonoscopy and biopsy. The gastroenterologist says it does not look at all like colon cancer and he thinks it is ILC mets. He said it was in the lining. This is typical ILC behavior. The odd thing is that no liver mets are showing. Maybe it mutated to a cancer that prefers colon. Goodness knows my colon has been inflamed with chronic diarrhea the whole time I've been on these meds. Maybe that makes the right "soil" for the cancer. Anyway, he could not get the camera past it, so I guess he saw about half the colon. He did also remove two tiny polyps. Pathology early next week but hoping for Friday. I'm so glad that is over and that we got biopsies. And it was not bad. I will not resist colonoscopy any more. These people are worthy of my trust. I feel so lucky to be there.
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Dear all, uhh, so much has happened here during past days:/ Sorry for those who struggle. If only I could do something...
Shetland, oh my, such a turn of events... but you fight like a tiger and will be rewarded. Same like last time with Neratinib+Herceptin which seemed a crazy low % solution, and here we go, you went NED. A plan is important and solutions will be found, maybe a surgery, as other sites are ok?
Susan, it is amazing how quickly you and your team reacted, they are amazing.
Dee, please keep us posted about the trial. That is so important to all of us. Don't know if it is you or your team but anyway you could easily be crowned clinical-trial-professional.
I was not on these forums last days - we are going to Latvia tomorrow for a FDG/PET-CT, so had to translate, prepare lot's of papers. We have PET also here in Lithuania but there they can import the 3D model from their machine directly into cyber-knife, so makes sense to drive to another country (4 h drive). I am tired of these axillar 3 lymph nodes, although small, showing up on ultrasound, and if they show up in PET, we'll fry them with cyber-knife whatever they are. Always trying to be one step ahead - this proved to be the best tactics for us. Just hope PET does not show anything else, as last CT (September 17th) was NED. Wish us luck - first PET for Sandra... I/we have what to fight for (photos below).
Saulius
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Saulius,
Hope your trip to Latvia goes well and that it helps to identify the mystery spots so you can get them treated. What great pictures of your Sandra and your son! He is growing up too fast!
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Hi..just catching up on this thread.
The first thing I saw was a photo of Salius and Sandra"s little boy. Awe, very cute and worth the job of managing cancer.
Grannax2, Shetland, AlabamaDee, Susan SF..shocked to read of your progressions. It is awful when you have to think of the next step. Just awful.
I will continue to back read the pages in case I missed someone.
Keep posting good news, too. It does uplift my spirit when someone gets a good scan and report.
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Dee, wishing you peace and comfort during this difficult week.
I hope that the trial still has a spot available once you get your results!
Best wishes,
Katty
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Susan, I am so sorry to hear about your progression and am sending you warm hugs and sister power.
I started Halivan on 10/11 and am so far finding it very tolerable. I hope you have an easy time of it too and that it holds the line!
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Thanks Shetland. I'm so sorry about the progression of the ILC. It is a sneaky beast! I was happy to read that the procedure was not too bad. You've been through so much!
This skin issue is something else! I'll be interested to see what they say when I go for chemo on Friday (assuming my blood counts are okay - feeling pretty draggy and I just barely squeaked in last week). Now it's quite a large area (but does coincide with the area they sterilized and put the dressing over) which is angry red with raised bumps like hives. Not oozing thankfully. Good grief....
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BSandra: You are such a blessing to this community and to your beautiful family. I hope all goes well with the PET, the trip........
Echoing SandiBeach: I am so sorry to hear that so many of you are having new progressions and worry. Cyber Group Hug!
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After a week of ups and downs at Mary Crowley Department, they have told me that none of their trials are open for me. At first they said they were open then are few days later they told me they are not.
Actually, after reading the details for each of them, they are way more time consuming and intense
than I want to tackle anyway.
So, I’m talking to my primary oncologist about circling back to one or two non toxic TX I’ve already had. My goal is to have a good quality of life while waiting for a new SERD or SERM to be FDA approved. I might even try Faslodex again, it helped for awhile about three years ago.
I really admire those of you who have done a ct. Dee, I’ll be praying for you about those three available spots in the ct you need next
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Thanks to everyone for the kinds words of support. It means a lot to me.
Kattysmith, I hope the Halaven works for both of us. Theresa told me that she knows someone who was on it for 10 months. That amount of time would probably allow us to get on some new approved drugs. Are you looking into trials too?
Hugs, Susan
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Susan,
I saw your posting on clinical trials too -- so it looks like one of those trials if not halavan? I hope that you have good success with whichever drug you go on.
Just curious -- are you seeking out these trials yourself or is your oncologist helping you to do this? I am currently on xeloda and neratinib, but I don't know how long I'll last on those. My TMs, which had dropped significantly, bounced back up this month, and with me, that's never a good sign. I see my MO at the end of November, and I'm wondering if we will be looking for treatment options.
Best of luck with the switchover. This disease is a bitch.
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BevJen,
I initiated the conversation about Phase I trials. AlabamaDee and Grannax really gave me the idea that this was a route we can take if we are heavily pretreated and not eligible for Phase II or III trials. It is, of course, riskier, but I hope will keep me alive long enough to see new FDA-approved drugs. I am on Halaven while I wait to see if I can get into a Phase I trial.
I was reading your profile and was amazed to see that you have been Stage IV for 15 years. I also see that you have done multiple microwave ablations to your liver. I assume these have been successful. My MO rejected my suggestion to do microwave ablation because she said it may damage my liver and other new ones would just pop up anyway. Since then, my largest liver tumor has more than doubled in size and I have multiple new, small tumors.
You are an inspiration to me!
Hugs, Susan
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Susan,
Thanks for the info.
I have "technically" been Stage IV for 15 years -- I had a single site met on my cervix in 2006, followed by removal of all of my female parts and treatment through 2019 with letrozole. Then -- BAM.
The microwave ablations were successful pretty much, but my IR won't touch me now. Each one targeted the largest liver lesion, while leaving alone others that were there that never seemed to do anything anyway. But after keytruda at the beginning of 2021, followed by hyper progression, my IR said he wouldn't go back in and that I should concentrate on systemic treatment. So that's where I am. (I'm not sure that's all in my profile -- I'll have to fix that.)
Interesting perspective on Phase I trials. I'll have to think about that one.
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if anyone has any advice I took my last Oxycotin (weaned off) yesterday....it wore off at 530pm...exactly 24 hours ago...I feel horrible right now..crying uncontrollably....tired...achy...restless arm syndrome...anyone got through this?
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Saulius, your encouragement means a lot to me. "A tiger." I like that. Surgery is definitely on my list of questions, since no other mets have shown up so far. Scanning in Latvia so you can possibly zap those nodes is a smart idea. My goodness, you must speak/read/write several languages. Thank you for posting the photos. Your Sandra is lovely, and your son is the cutest boy ever. He looks sweet and intelligent. Takes after his parents, I am sure.
Sandi, it does consume the mind, thinking about what to do when progression happens. So many of us in the middle of it right now including Grannax2, Katty, Susan, AlabamaDee. Hugs all around.
Bev, I do not like hearing your TMs went up. Why not try adding Faslodex? It wouldn't "cost" much in terms of side effects and would cover the ER base.
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Nicole, can you talk to your Doctor about the withdrawal symptoms you are experiencing? Maybe there is something they can prescribe to help you get through it. I've read that Zofran can help. It is also used for nausea caused by chemo. There is another drug, clonidine that can be prescribed.
Alleviating Symptoms of Withdrawal from an Opioid (nih.gov)
Ladies, I am so sad to hear that so many of you are experiencing progression. It is very sad. I pray every night for all of you. For a better treatment, for a cure. All I can say is you are all in my thoughts and prayers, but I am at a loss for words.
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SP,
I will suggest the faslodex to my MO, but I sent her a note yesterday asking her opinion on stuff since I don't see her until Nov. 30, and she hasn't responded. Also, I have already been on faslodex with Ibrance for about 16 months. Of course, we never are totally sure what is causing things to go sideways, but I wonder if she would consider faslodex since I just went off of it in January when I went onto keytruda. We'll see.
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another point someone mentioned in favor of a stage 1 trial is you know you're getting the new drug. In other phases you might be randomized to standard of care and a placebo.
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Dear Bev, Shetland, Sandi, everyone else, thanks a lot for your encouragements. PET went smoothly, now... waiting for results.
Dear Nicole, please also check this article: leronlimab delivers 300 % improvement in PFS and 450 % improvement for OS in mTNBC: https://www.onclive.com/view/leronlimab-continues-... Can you show it to your Oncologist? FDA has fast-tracked it... Now, I think, it is very important for you to somehow "stabilize" yourself, ask for help, so that you could concentrate on healing instead of being overwhelmed by oxycotin SEs:/
Dear Moth, wow, you are so right about PH1 trials and possibility TO GET the drug! In other phases one could be rolling blindly with just another old drug:/
Saulius
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Nicole- I second what husband said. Even if you slowly decreased your dose, I think many of your symptoms are due to withdrawal from the oxy. Please seek out someone e who can help you and your body cope without this addictive pain kille
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Thanks Husband and LFF and Saulius...the pills are done we titrated down over a month I took the last pill 2 days ago....I just don't understand why I still don't feel good...or like "myself" especially physically and emotionally....they gave me gabepentin for the restless arm/leg but I took it once a long time ago and it made me severely dizzy.... last night again....I took a xanex to get sleep.
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So I believe I have a large tumor growing in my liver and NOT in a good spot...bc my pain is at the bottom of the ribs which means that is exactly where the one last year was and I had it Y90 and had all those issues.... so I will not be able to get any kind of microwave ablation or Y90 or anything like that. I don't scan until the 29th and get results Dec 2nd. UGHHH I tried to move up but they have no openings... I am feeling very discouraged and torn. I don't know whether to go to taxol + keytruda (cant get Tecentriq anymore and I don't believe there is any other immunotherapy they are combining with chemo right now is there)??? or to do the Troldlevy.... I am in a facebook group and spoke to people about both...both have side effects that suck... MY MO was gonna start me at a reduced dose on the Trodlevy (that much I know) I am thinking about asking her to do the Taxol + Keytruda but reduced Taxol dose....??? Does anyone have any thoughts please let me know.... Also is Keytruda even good with a Taxol? I mean I wanted tecentriq but its not available anymore so if you all know ...can you let me know?
PS: I am basically 100% positive I have progressiion in my liver the pain has now been there all day and night for 3 days....that is NOT die off I know my body with this CRAPPY disease by now....
Thanks sisters
****EDIT TO ADD***** I completely forgot the other reason I know I have progression in liver (besides having had 6 tumors there already)..is because my bilirubin keeps going up and that, for me is a classic sign of progression
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