How are people with liver mets doing?
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ShetlandPony,
Thank you for your empathy and your ideas.
1. Lovenox injections - Needlesticks are painful like all other injections so I use my port anesthetic every time...the one you suggested. It may or may not help with the needlestick pain. What is PAINFUL is after the needlestick...severe burning lasts for 10-15 minutes. I'm talking like 9/10 pain. Like sciatic pain at the injection site. Dr Angel looks at me sympathetically but does not know what I'm talking about. Apparently other patients don't have this issue.
2. Possible UTI - Burning isn't just while liquid flows...it happens while just sitting still feeling urgency to go. I was up from 2 am night before last because of this urgency and severe burning before during and after. I have been drinking as much cranberry juice as I can tolerate and it is helping. I see Dr Angel this morning so we will discuss further.
3. Liver infarcts - From what I read, they are rare because 2 blood vessels have to be blocked at the same time to cause them. But I have classic pathognomonic liver MRI signs of multiple infarct sites. Non-occlusive blood clots in imaging does not tell us what happened 3 mos ago. Why the doctors won't commit and say that's what happened...I don't know. But it seems all this occurred when I had my horrible reaction to Xeloda and liver damage enzymes shot straight up. Those numbers are almost normal now so that's why they believe the infarct situation is improving. Bilirubin has stayed in the normal range throughout.
4. Kitties - They are my precious little angels. They are all fine even Max. He seems to be perkier and more active, even with these bouts of shivering. Possibly the mats have been bothering him alot more than I understood. They were not horrible, just more than I can manage on my own. He has to be sedated at the vet because he reacts so vociferously. It will be very hard to let the guilt go but I am trying. What will be the hardest is if I have to find new homes for any of them before my demise...my husband will keep some but not all...he does not consider them children like I do.
Thank you for "listening" and caring.
Gumdoctor
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Thoughts for NicoleRod today. I think today- 28th- is her cryoablation and biopsy.
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gumdoctor and pony , you write so eloquently and gracefully and vividly both.. can not say I enjoyed reading your posts as they are written about stress and hardship you go through but how well you manage to convey both ideas and your feelings .. wishing you both well.
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Sending good wishes to Nicole for a smooth and successful day.
Gumdoctor, forgive me, I have another brainstorm about the Lovenox injections and I hope it is not a stupid one. So I have just completed a month of administering an intravenous antibiotic through my port daily. (It does not come in pill form.) The home health nurses came and taught me, then I took over. My port was accessed and covered, with a line coming out. Once a week a nurse changed the needle and dressing. Well, one of the home health nurses said the same drug can also be injected, and that they mix lidocaine into it if the doctor remembers to order that, because it is a painful shot. So my idea is, can you either have lidocaine mixed into your Lovenox, or administer it through your port instead?
And what about the red numbing pill to relieve UTI sensations? You've probably already tried.
Thank you, Anotherone. Great screen name, by the way.
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Ok ladies I just came from my MO appt. So here is the update ( with a couple of questions for the group )….
My onc wonders if the slight increase in the size of the liver met could be a fluctuation in "scar tissue". ??? Question: What do you all think of that---scar tissue?
So she is going to order a PET scan (if the insurance company will agree to one--have denied PET in past, but now we have documented increase in size). Question: What do you think of the PET order? I was thinking tumor has to be at least 1 cm to be seen on PET- is that correct? Can the PET pick up my small liver met and show a SUV reading? She said that would show activity of the liver area in question.
She said if we do not get much info from the PET, we will keep the treatment the same and rescan with my routine CT in 3 months again and see if it increases again.
I did ask about MRI of liver, but she shot that down. Said MRI is for pre operative considerations i.e. vascular studies. Not what we want.
Thanks for your advise. You all are so knowledgeable.
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Candy, scar tissue is a big thing for me right now! I just learned that the biopsies of the masses near my bile duct and inside of it do not show cancer, and it is possible it is scar tissue from treated tumors. Still a problem, but a different one. More later.
Regarding PET-CT—When I was first diagnosed with mbc and liver mets, I had a PET-CT that showed lots of active liver tumors, and immediately started Taxol. At my three-month PET-CT scan, many shapes of tumors could be seen, but there was no metabolic activity. Cancer was dead or sleeping. Complete metabolic response. To me that shows the value of PET-CT for me. It took years for the shapes of treated tumors to go away. On another imaging mode, how would we have known my chemo had worked so well? The size question is for the radiologist.
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Candy, I think your mo has a good plan. The pet will help clarify the current situation, and she's ready to check again in three months.
I don't know anything about scar tissue, so I can't comment about that....I hope all goes well with you...
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Dear Candy, my wife's liver was full of small tumors during diagnosis, and on last MRI (August 26) was completely clear, as was for past 18 months and 7 MRIs. However, when on ultrasound, they see fibrosis, i.e. suspected small milimeter-sized scars that might be permanent. Her liver numbers are perfect though. I once asked the ultrasound-guy, and he said that scarring in liver is possible after tumors die fast. I also think your doctor is looking for "activity" and that is why PET is ordered but I have been told that MRI is the best way to see what really happens in the liver and does not give any "false" signals (any inflammation or other things can be caught on PET). Saulius
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what is y90 I am in Australia
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Candy -
Having gone through this since July, My ONC also told me liver MRI is considered the "gold-standard" for assessing liver mets. PET scan was not even suggested.
Echoing what Saulius said.
Gumdoctor
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Anotherone,
Thank you for your kind words. I love writing. I love writing on happier topics but it helps me to clarify my thoughts, to write it out. It helps me to communicate with people here...the ones who "get it"...it helps me to think someone reading what I write here, may be able to benefit from the story/information someday.
I have read posts from as early as 2012 on BCO and learned from those who have already passed on from our horrible MBC. They left us a legacy by writing things down for those who would follow them. It is a very worthy endeavor to share our stories...
Gumdoctor
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ShetlandPony,
Not dumb at all. Great ideas.
1. UTI - Did urinalysis yesterday. NO INFECTION. Good news/bad news. Started the purple numbing pill that stains what comes out and it is helping alot. Only 10 tabs so this is diagnostic for ONC. In my reading about non-infectious cystitis, some chemotherapies are listed as culprits because their metabolites irritate bladder lining. Abraxane was not one of them. Once ONC and I discuss more, I will know more.
2. Lovenox - Subcutaneous injection so I don't know if the port will be appropriate as it goes directly into the bloodstream. The syringes are pre-filled and sealed by the manufacturer so it sould be a major thing to change that up. I will ask ONC when we visit soon on the non-infectious cystitis.
Separate note - Bloodwork and liver enzymes all looked fairly decent yesterday. Major concern (for me) is tumor marker has gone up more for 2 readings in a row. It is now as high as the highest value since we found liver progression in July. ONC and I did not discuss yet because we already met before labwork came back. Pretty sure she will not be concerned until we have 3 serial increases. I see her in 2 wks and we will discuss then for sure. Next imaging planned for about 6 more weeks. She probably won't change that yet.
Hope all is well with you for now.
Gumdoctor
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Hi all..thank you for your well wishes...
.so I had my cryoblation yesterday. I underestimated the pain... I do not take pain meds at all. When we left the hospital my pain wasn't bad..but then a car ride home that normally takes about 1 hour and 30 min took 3 and half hours...I was in sever pain..it is what people must feel like when they break a rib I couldn't get a breath (nothing to do with lungs and I knew this, they do a chest X-ray before you leave) so the pain was so bad that my liver started having spasms...it was awful. I couldn't at that point even get a script for pain meds because they cannot be called in to Pharmacy. So when I got home I took an 800 mg Motrin and 2 tylenol and THANK YOU LORD that took the edge off. I am still very very sore today and when I try to breath in it all hurts where the liver and ribs are.
So out of the 3 tumors he cryoblated 2. 1 he had to leave because it was too close to intestine/colon and he did not want to risk perforation. He said if (what ever treatment my MO decides on) doesn't work, surgery can definitely remove it. With that said...I think cryo is awesome but now I know it doesn't just depend on your tumor size..but also about location as to whether or not they can do it.
Waiting on biopsy results I do have appt at my MO next Wednesday to discuss that and treatment method.
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My IR has my PET images now. His office should call soon to schedule my consultation.
Rainbow. You live in the right country to get y90. SIR Spheres were invented there. I'm sure if you research it you will come up with a good IR, interventional radiologist. I had y90s in 2017 for my liver mets, it worked. It's actually called radioembolization. Ytrium in tiny microspheres are inserted into the tumors. The IR does a mapping to be able to visualize all the tumors. 💞
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Grannax - Waiting to hear with you...praying for good news...
Gumdoctor
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Sorry for the gross picture...my kitties are much more fun to look at...
Looks like I am going to lose several fingernails as many look just like this one. Not looking forward to this. I lost none during FEC-T stronger chemo for bilat stage 3 BC...
One more thing to deal with...
Gumdoctor
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Thank you all for your advise and support.
I guess scar tissue is logical in my case. Saulius stated that scar tissue may form when the tumor dies fast. Mine was 8 cm when found and shrunk to 2.5 cm within a few months. Pretty fast shrinkage.
How do you know if the cancer is dead or sleeping? My MO commented yesterday that I still have circulating tumor cells since my TM's are still elevated above normal. And have always been elevated with steady increase over the last 4 months.
So how do I convince my MO that MRI is the "gold standard" for viewing the liver and that the PET may be inaccurate due to reading inflammation instead of cancer?? I asked about MRI and she said NO. I guess see what PET shows and maybe ask again about MRI?????
That is what is hard about reading and researching and then MO doesn't agree with what I recommend. I am not the doctor and I cannot contradict what she says as if I am smarter than her. Even though the ones here are pretty dang smart !!!!!
Shetland--- So what are they going to do about the scar tissue with you?
Nicole- Thanks for the update. So sorry for your pain. Will be praying for biopsy results and appt next week.
Grannax- Waiting is so hard. Praying for you.
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Candy, you might approach your oncologist with more of an enquiring than convincing approach. Ask her why she thinks a PET-CT rather than MRI is the best one for you at this particular point. Listen to her answer. If she is willing to fight insurance for a PET-CT she has a reason for wanting it. It sounds like she wants to know if what appears to be an increase in size is actually due to scar tissue, or the fact that the tumor size can increase before it shrinks when treatment is working.
I think that rather than there being one gold standard for all situations, much depends on the particular concern, the particular cancer's characteristics, etc. I have had at different times ultrasound, MRI, PET-CT and CT with Contrast to view my liver, depending on what is needed by my oncologist, radiologist, liver specialist, endoscopist, etc.
“How do you know if the cancer is dead or sleeping [As opposed to growing]?" You know from a PET-CT which shows metabolic activity.
“...PET may be inaccurate due to reading inflammation instead of cancer?" Have you had any recent surgery or injury to the area of concern, candy? If so, let your onc know. Otherwise the PET should be accurate if you follow the pre-scan protocol: No exercise and minimal carbs the day before and the day of the scan.
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Gumdoctor—Compounding pharmacy?
As for me, the endoscopy doc hopes the two new stents will stretch the area so that next time (three months) I can go without them. If not, I guess I get a stent replacement every three months. (When you think about it, these stents are saving my life.) So my question for my onc is, do you agree this is not cancer near the bile duct? If so, is the lesion on the far right the only thing that has grown? If that is the case, is it even considered progression? Can we please zap that one and continue with only Xeloda? Is there a reason to resume the Halaven/eribulin that is scheduled for Monday? Seems like overkill. I like to think she is busy discussing me with her colleagues this week.
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Candy - just wanted to weigh in that in my case PET/CT has proved to be the best way to determine cancer burden in my liver. I have pseudocirrhosis (scarring) and cancer can hide in the MRI. Ultrasound doesn't show if it's scar tissue or active cancer. PET shows what is active. Hoping it gets you information and answers.
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Thrivingmama, today's MRIs are also done with combination of contrasts and activity is also seen, so hiding under scarring is unlikely. Also MRI has an advantage when we talk about mm, not cm. PET/CT can be read by a physician, while MRI reading needs a skilled radiologist. One of the heads of radiology department at NCI here told me that with ultrasound he can also see activity pretty well. So probably the truth, like always, is somewhere in the middle. We get MRI for liver and abdomen, and CT for lungs...
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My IR did review my PET and called me. He quizzed me about what chemo has failed, etc. He said he can do another one for me but he won't be able to do as much as he did the first time. I'm not sure what that means. He said my liver has been through a lot .He also said I'd need to wait three weeks after chemo, that means two more weeks. I want to quiz him more about his reservations but mostly I'm excited that he can do this local procedure. Of course it will be three procedures, mapping and both lobes.
Meanwhile, I see my MO on Monday. She's aware that I'm seeking his opinion. I'm sure she will want to discuss systematic TX. I've thought of a couple of ideas on that. Possibly Faslodex or Tamoxifen. Real chemo is not allowed during y90 and recovery. That means two months off. AI's don't work for me because I have ESR1 mutation. IL and AA failed.
Gumdoctor All of my toenails are coming off. I'm not taking a pic, way too ugly. Lol 💞
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Grannax,
This sounds like mostly good news for you. I understand the guarded optimism. There are so many variables and factors at play. But I am very pleased to see things moving forward for you through this current challenge.
I was a little reluctant to post my ugly fingernail picture...but I figured it may help someone else...
Spent some time in the park with these oh-so-happy geese yesterday. They were swimming away in the picture only to land on shore and march right over to me honking for food. It was so fun and so very funny that I totally laughed out loud. Laughter is so important in our situation...
Gumdoctor
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I love geese. Did you know they mate for life?
You're just braver than I am about posting nails and hair shaving. Lol
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I did not know they mated for life. How interesting. I also did not know they could have blue eyes either. This guy sure had blue eyes. He (or she) was the leader and the one doing the honking to get my attention. It was a fluke we went to the park for some maybe-tree coloe chaning pictures...so grateful we went. I had so much fun with these geese...especially this one.
Gumdoctor
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Gumdoctor,
Also, you were lucky. Sometimes (especially when mating) geese can be very nasty -- especially Canadian geese. They will hiss at you and, if you get close enough, might even bite you.
I think geese are beautiful anyway. And I just love when they go up in flight in a "V" formation, and then switch who is the lead person to deflect the wind in the front -- truly beautiful.
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Grannax, glad you can have another Y90 procedure. Did the IR mention there being a lifetime limit to Y90? I am not aware of one but am curious what else your IR said about having a second Y90. I did remain on chemo when I did my Y90. For my right lobe, I didn't take a break and for my left lobe I took 1 week off of chemo. I was on Doxil, which is only given every 4 weeks. It continues to circulate in the body for a few weeks after the infusion and therefore, is not required to be administered as often. That long schedule made it a bit easier to remain on chemo.
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Thanks all for the advise. I took yesterday off from the Threads so back on now and getting caught up. I guess I will wait for PET (if insurance approves) and see what it shows. Ask about MRI again if questions not answered about liver from PET scan. PET, MRI, CT, all scans show a little different info. Confusing to me. My head is full for now.
Shetland-- My question about cancer dead or sleeping is because of my TM's. Since they increased recently, and have never been within normal range, my onc stated that tumor cells are circulating. So if the PET shows no activity, then why wouldn't the TM's drop back down to normal, and definitely not increase. Also the comment I made about inflammation is because I have autoimmune disorders and my Sed Rate is high and is always high. Constant state of inflammation in my body.
So Shetland, in your case, if the bile duct issue is scar tissue and not cancer and you need the stents, then can they do surgery to remove the scar tissue so you don't need the stents? And don't have to replace them every 3 months. Sorry for the questions if they are stupid questions.
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Hi,
With so many of you dealing with much more difficult situations than me, my question below may be too trivial. But I know I'll get the right answers here.
Has anyone done CMF for liver mets progression? Taxol has apparently stopped working since my PETscan report today showed 2 new lesions in the bones and new lesions in the liver. Higher SUV in other existing lesions. I was given 2 options- Piqray -since I have PIC-3 mutation and CMF. I was told that Piqray is a difficult regimen, and most patients drop off the treatment after 1 to 2 months. So my MO suggested CMF.
I want to ensure I am on the right track. Any thoughts, comments or advice? Thank you!
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CDK7 inhibitors supposed to be effective for ESR1. You do need high HgB and low total bilirubin to enroll.
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2017-01724&r=1
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