How are people with liver mets doing?
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oh Nicole, that is worrying. It's so frustrating. Why can't this thing just go smoothly & your chemo just work. Fingers crossed this will all turn around.
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Kattysmith Hurray!!! That's fantastic news!
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Nicole, I hope and pray that you are feeling better today. {{{ Warm hugs }}}
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There are trials of Copanlisib. It’s an off label use for bc. I don’t know anything else but it’s worth a look. My MO suggested it but I didn’t want to wait for test results to proceed.
I bought natracure booties and ice packs for my feet. I used something that looks like giant frozen oven mitts. Both from Amazon. I initially didn’t like the mitts but now am glad they are easy to slide in/out so I can press the nurse button. I believe it’s Moth that has a cool DIY option.
My center is chintzy with their ice packs. And they told me they hadn’t seen anyone use it for taxol. I will try almost anything to not get neuropathy.
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Great news Kattysmith!
Nicole, I think we all feel for you right now - nothing is worse than chronic pain/ discomfort and the sense that nothing seems to be working. Surely your team can help with SOMETHING to support you pain wise? Mine definitely have told me that pain isn’t something I should have to tolerate, it just makes everybody miserable. Having just had a pain spell myself, I completely recognise the sense of ‘ had enough’. Try and hang in there and maybe someone you trust can help advocate for you too? Hopefully you’ll see a light and feel better soon.Scan for me on Thur as we suspect the Faslodex isn’t working and been very breathless. How can you go from doing an 8.5 mile level walk 2 weeks ago, to not even managing 5 mins without stopping several times to catch breath? Scary.
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Nicolerod, do you have a Palliative Care team to help manage this pain while it is being figured out the cause? They are suppose to be the experts for those of us with Stage IV cancer. They should also recognise your emotional turmoil and help with either meds or compassionate counseling. I so worry about you and your long time suffering. You have much to live for..but keep getting beat down. This is not you from reading all your posts these past two years.
We hear you and we care.
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Thank you all. Please pray for healing for me. I had to break down and go to hosptial last night I was in SEVERE pain...it was HORRIBLE. I had to get pain meds ..something called Delauding??? 2 times ...the 2nd time they upped the dose and fell asleep and when I woke up the pain was gone. The pain was so bad in my stomach that my whole chest and back where in pain. I had a CT scan and they found nothing...but I am concerned bc I saw the words NEW INFILTRATING MASS"......
. I know JFL told me that the tumors swell after Y90 so I expected that...but here is what the report said (PS my stomach looked normal) at this point I am thinking its the Y90 radioactive stuff just going through my body...stomach etc.. At the very bottom I will results from OCTOBER 2020 MRI.... NOT CT.. I DIDN"T have a CT then. CT ABDOMEN AND PELVIS W IV CONTRAST - Details
Study Result
Impression
No pulmonary embolism, acute pulmonary infiltrate, or pulmonary
metastasis.
Increased metastatic disease in the liver.
New wall thickening/colitis of the hepatic flexure of the colon.
Sacral metastasis.
Ali Tahvildari, MD
1/9/2021 9:57 PMNarrative
HISTORY: CA, sudden onset chest and back pain
COMPARISON: 10/23/2020 MRI abdomen 12/07/2019, CT chest abdomen pelvis.
TECHNIQUE: CTA chest, CT abdomen and pelvis with 100 cc Omnipaque 350
nonionic IV contrast. The following dose reduction techniques were
utilized: Automated exposure control and/or adjustment of the mA and/or
kV according to patient size, and the use of iterative reconstruction
technique.
FINDINGS:
No pulmonary embolism or acute pulmonary infiltrate. No suspicious
pulmonary nodules or masses. No pleural or pericardial effusion. No
bulky thoracic adenopathy. Bilateral mastectomies.
New ill-defined infiltrative mass in segment 5, measuring roughly about
4.7 x 3.4 cm. Another mass in the inferior right liver tip has increased
in size, measuring 2.4 x 2.2 cm compared to 2.1 x 1.9 cm previously.
Stable 1.7 x 1.6 cm lesion in hepatic segment 8.
Stable 9 mm lesion in hepatic segment 2. The portal vasculature,
gallbladder, biliary tree, pancreas, adrenal glands, spleen, kidneys
show no acute process. The uterus and adnexa show no acute process.
Trace pelvic free fluid. The bladder is normal.
The bowel is nonobstructed. There is new wall thickening of the hepatic
flexure, adjacent to the enlarging metastasis in the tip of the liver.
No retroperitoneal or pelvic adenopathy. No free air.
1.7 x 2.2 cm destructive metastasis in the left sacral ala, at the S1
level.MY REPORT FROM OCT but it was an MRI not CT says this:
Enhancing mass in segment 6 measures 2.7 x 1.6 cm, decreased previously 4.0 x 2.8cm. Enhancing mass segment 5 of the liver adjacent to the gallbladder measures 1.5 x 1.0 cm, decreased previously 2.0 x 1.2 cm. Nodular enhancement of previously ablated mass in segment 8 persist. Segment 8 mass measures 1.9 x 1.9 cm previously 2.2 x 1.8cm, slightly decreased. Mass in segment 2 of the liver measures 1.2 x 1.0 cm previously 1.1 x 0.9 cm not significant changed. Mass in segment 6 of the liver measures 1.3 x 1.1 cm, not significantly changed previously 1.1 x 1.0 cm.
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Hi Nicole, oh no, I'm sorry you had to go to the ER but good you got some relief. FYI, I think your pain meds were Dilaudid (just for your reference for future if you want to tell docs about what worked/didn't). Dilaudid is same as hydromorphone. It is an opioid. Pls take constipation precautions.
For your liver stuff - you'd need to compare with the previous scans for location of which mass was treated with y90 and which are old and known? Was the one in Segment 5 the one that was treated?
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Oh MOth thank you for replying...I feel so stupid but I know 2 were treated and I know 1 of them was the one that said this on the OCT MRI (NOT CT) "Enhancing mass in segment 6 measures 2.7 x 1.6 cm, decreased previously 4.0 x 2.8cm." So that cant be what they are referring to in segment 5...but the weird thing is this...did a tumor just grow in 20 days (since my Y90) to 4.7 x 3.4????!!! and if it DIDN'T I KNOW the IR would have saw that..and told me bc I asked her if there was anything NEW....and she said NO....So I don't understand
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Nicole,
Did they say anything to you about colitis? I see that they noted something in your colonic wall. That can produce unbelievable pain.
I would bet, although I don't know, that the "new" stuff might be attributable to your y90, but your MO or IR should be able to enlighten you about this.
I'm so sorry that you felt so bad that you had to go to the hospital. Wow. Here's hoping that you will feel better soon.
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Nicole,
Also, I know that with microwave ablations, they extend the area around the lesion. So then it looks bigger. I'm just not sure if that happens with y90 as well, but it doesn't add up that it would have grown that fast anyway. Did either you or your hubby tell them when you were going into the CT that you had recently had y90 plus a prior cryoablation? Sometimes radiologists don't just discern this if they aren't used to looking at these local liver treatments.
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Yes they new I just had Y90 ..that much I know. Bev...I don't see what you see about Colonic Wall?
Yea I know you all know my fears with constipation and pain meds..so yea Bev can ya believe it was that bad
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Nicole,
In impression it says:
New wall thickening/colitis of the hepatic flexure of the colon
and then they refer to it in the extended report.
I have had a couple of attacks of colitis -- most of them when I was MUCH younger. But I remember one time, when I was in my 20s, it was so bad that I couldn't even get out of bed. My colon was spasming big time, and I happened to be visiting my parents -- my poor father (who wasn't a young man) had to half carry me out of the house so we could get some help. It was just awful -- I think that was the worst pain that I ever had.
I just didn't know where the pain was exactly, so that's why I picked up on that.
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I see it now thanks Bev...my pain is right below my cleveage...definitely in the pit of my stomach.
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NicoleRed - I am sorry that you are going through this and hope that you can find relief and treatment that does not cause the pain and other SEs. I have no experience with what you are going through. Accupuncture might help. I'm remembering when I was in high school a friend of the family who was also a DR cameover for dinner. He described surgery he witnessed in China. This was 1974 or so. He described seeing surgery where only acupuncture was used, but if in the US, the person would have been fully sedated. Some people post that CBD,CBD/THC helps. I have not found those helpful for me for sleep or pain from arthritis caused by AIs,but others do. Good luck and hugs.
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Dear Nicole, uhh... I feel your pain, and few of your posts almost made me cry. Moreover... what you all go through mentally is unimaginable. If it was only physical pain:/ Nicole, I am not a doctor, as you know, but what you have experienced might have been some big inflammation. Do they prescribe antibiotics after Y90? My personal anecdote: just before Sandra felt a lump (literally a week before) I suddenly started to feel huge pain in my stomach. It was so huge, I don't remember anything, as in few hours I was only fainting. So, I was taken to hospital, they made a scan, decided it was maybe appendicitis, gave me big injection of pain killers/anti-inflammatories, and pain disappeared, I suddenly woke up. I cried alone in the hospital at night, as I thought it was cancer (therefore I still think it was some sort of sign "from above"). No pain at all after these pain killers but in the morning they took me for laparoscopic surgery and after I woke up, I asked surgeon what did he find? He simply said "nothing, just few drops of inflammatory fluid". He said this could have been resolved with anti-inflammatories or some antibiotics. So this is what inflammation can cause. Crazy... After a few days Sandra noticed a lump that changed our lives forever:/ Anyway, Nicole, what can I really do, is give you a big big virtual hug. We are with you, and if that is what I think - inflammation, it maybe could be managed. I hope you'll be fine and ready for another round of Y90 without these complications. And after that, some good news should come, Y90 will do its job.
Sandra goes for liver MRI today, and I already cannot stop shivering:/ Will write when we get results. Saulius
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Thank you so much all! For being here for me ... and Saulius..thank you. It may very well be inflammation..unfortunately the LAST thing I can take is Steroids since I think that is what may have caused this and they really HURT my stomach when I take them..even with food etc.
. I am hoping it will resolve soon
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Nicole- you have heard from so many who care about you and who can empathize with what you are going through. I can only add that my heart and soul feel for you and what you and your family are going through. I pray that you get some answers, some support physically and emotionally, and some resolution. I pray that you have a time of stability and peace, a time that is pain-free, and a time that you can enjoy life. ❤️❤️❤️❤️
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Saulius, all the best wishes on Sandra"'s MRI. These tests are so nerve-wracking!
Nicole, I'm glad that you got some relief at the ER and hopefully you will remain comfortable and stable in the coming days. What are you horrible rough time you've had. I'm thinking of you and holding you in my heart.
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Saulius,
Thinking good thoughts for you and your Sandra.
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Karenfizedbo,
Your message about your scan this week got lost in this thread. Good luck on the scan. Personally, I think that faslodex over time can cause some breathing difficulties -- of course, I've had it coupled with Ibrance, so it's difficult for me to separate out the various side effects and attribute to one drug or the other. But I am hopeful that that's what's going on -- the cumulative effect of your several months on faslodex. If not, I'm hopeful that your docs will be able to come up with a better treatment for you. Thinking good thoughts.
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Thank you Bev, Katty, everyone... you are my best, what would I do without you... till very soon, Saulius
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saulius, best wishes for the MRI. Hate how long those take.... hope it's over soon and good results reported asap
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Karenfizedbo, glad you're getting a scan but sorry to hear your experiencing such sob. Bloodwork was ok I guess? Cause hgb drop can present like this. I hope everything gets sorted out quickly
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Karenfizedbo15, Saulius, praying for you for good scan results. Nicole, that is so confusing. My wife and I hate reading scan results, they contain so many confusing descriptions that sometimes about the only one what can sort it out is the radiologist. I pray that you can get some answers, that someone who is involved in the process can walk you through the scan results and explain it fully.
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Just wanted to let everyone know that NicoleRod was in such pain that she went back to the hospital last night at midnight. They admitted her for pain/pain management and are giving her some stuff via IV to help her out with the pain. She is going to have an endoscopy tomorrow so she'll be there for a bit. She's in good spirits, and I think the IV drugs are helping her out with her pain -- at least, that's my guess, since she sent me a copy of the "room service" menu -- ha, ha. If she's even thinking about food, that's probably a good sign.
She wanted me to let you all know. If I learn anything else, I'll let you all know.
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Wow, BevJen, that is horrible, obviously pain is the worst- Nicole, hope you are right now feeling so much better!!!!
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thx BevJen. Nicole, feel better!! I really hope that they figure this out quickly.
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Sending healing thoughts to you, Nicole. I hope the endoscopy gives your team something to go on. Glad the pain meds are working! Thx for the info, BevJen.
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Praying for you Nicole. Thanks for bringing us this news BevJen.
Curious, I hope you can get the scans you want. Fighting with insurance coverage sounds awful.
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