How are people with liver mets doing?
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Good afternoon all,
I'm sorry lisbet and Michelle, you too are experiencing the unknown. I find myself trying to find the same answers. I have been reading everything, almost everything 😊, And am so glad there are so many so knowledgeable of txs . I have know clue what is happening.
I was told that my liver mets are inoperable and that even a biopsy was too risky because my tumours are next to the heptic vein and that the liver doesn't take radiation well. I started I/L end of November and a baseline CT Dec 6, I had my new CT last week. The biggest tumour grew from 3.5cm to 6.4cm and there are many new smaller growths.
I wonder if anyone might know what the next step might be, my appointment is on Wednesday. I have never heard of Y90 and don't know if it's available here? Am I right in assuming because treatment didn't work, and they are growing so fast, the mets must no longer be er+ HER2-
I feel so uneducated and don't know what I should expect, ask or need...this is only first line, could it possibly be my last
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MJHJAN1014 (Mary Jane) thanks so much I will definitely ask tomorrow at my appointment. He mentioned doxil before but felt taxol would provide better quality of life. I did have adriamycin during my first chemo.
Cure-ious I had a biopsy in June when the first liver lesions appeared. HR/PR + Her 2 -. I asked for the new lesions in the right lobe to be biopsied but he said it was not necessary.
was on Ibrance/ letrozole for four months still had progression. That's CDK46 right? MO felt hormone therapies had all failed (tamoxifen, affinitor,letrozole) so we moved on to xeloda ...again progression .
Aussie-Cat (Victoria) thank you so much 😊
SandiBeach5 lol I like the 4 sets 😉
I also so appreciate the encouragement and virtual hand visual. I'm so thankful for this sight I've been lurking for years. I'm learning so much and will try to figure out the treatment profile part. I'm not even sure how to reply to each of you. I will figure this out. I'm not agreeing to anything until I post it on here and get feedback. You ladies are the experts in my mind. Thank you so much!
Love, hugs,prayers and everything else I have to all of you. Thank you for responding so quickly to me and for
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Jayneyy, Thanks for the input on having ascites from liver mets drained. I wish your mom all the best! She is lucky to have a daughter who is following her care.
Kayla250, I'm so sorry that you experienced progression on I/L. Over time breast cancer can become resistant to hormonal treatments, even though they might still be ER+ on a biopsy. Since you have already taken letrozole and anastrozole, your cancer may be resistant to those AIs. Your oncologist may consider changing you to Ibrance with Faslodex (SERD given by injection). Exemestane is also a possible hormone therapy with or without Afinitor. Due to the size of the liver met, your oncologist may want to try Xeloda (pill chemo) or an IV chemo. I'm currently on Xeloda and feel well, although I do have sore feet from hand/foot syndrome. If one of the systemic treatments can shrink your liver tumors, then a local liver treatment like Y90 or RFA could be used. I just want you to know that there are many options available after Ibrance/Faslodex fails.
Theresa
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Thank you so much Theresa, I’ll definitely research the Faslodex. Being able to do that gives me hope and something to do, in preparation, for Wednesday.
Again, I appreciate all those who came before me, 50sgirl, ShetlandPony, Miaomix, blainejennifer, JFL, ABeautifulSunset, Grannax2 to name a few...you are able to share your experiences and give us so much knowledge. I have become very familiar with your stories thank you.
HLB, AMP47, Rt Chicago and lisbet54, I will keep you in my thoughts as we move forward in the coming weeks.
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Kayla. Where do you live. I've never heard of anyone who has been unable to have a liver BX. It sounds like you have several, they don't have to BX the one near the hepatic vein. You need to have a BX. I think you need to have Genomic testing done. That will tell if your tumor has become resistant to hormonal therapy, like AI.
Sometimes with an aggressive liver tumors, your MO might want to put you on an aggressive IV chemo for a few months to get some fast results. Of course if you want more information on y90, I will be glad to tell you about mine. Sometimes after some fast shrinking of tumors, you can go back to milder chemo pill.
Let us know what your MO says.
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I had very fast results with abraxane, which I am on now. And I have taken all the AIs, faslodex and Ibrance and xeloda. I've had 4 cycles and tm dropped a lot after the first treatment.
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Grannax2 thank you for that, I have been wanting to ask that very thing about the biopsy. I haven’t come across anyone else, here, that was told a biopsy wasn’t possible...I’m in Canada, just a couple of hours away from a major Cancer research facility so I’m sure if I knew what to ask, I’d get answers but up here, we (well, I) tend to rely on the doctors telling what they’ll do. But Y90 still seems to be some new...I’ll definitely ask
Thank you HLB, I will research about abraxane too. It sure sounds promising.
I truly hope that everyone going thru progression finds their perfect treatment this week.
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Kayla - I would ask about a biopsy now, especially given the size of the met and the new spots, it seems like there should be some area they could target. For what it's worth, my breast tumor was strongly ER+. I was on ibrance/faslodex after mastectomy because I didn't get a good chemo response. I became stage 4 and developed the liver mets while I was on Ibrance. Confusing. Turns out that my liver mets were triple negative. (so I went on GemCarbo and it got me to NED after only a few cycles). A biopsy and genomic testing (e.g., Foundation, Caris, etc.) may help figure out what line of treatment makes the most sense for you next.
RT Chicago - have you had genomic testing done? Perhaps if there is tissue left over from your previous liver biopsy, you could use it for that.
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https://breastcancer-news.com/2017/01/20/ibrance-s...
a review on CDK4/6 but what is interesting is the section on combinations of CDK4/6 with...mtor/pik3a and/or immune checkpoint inhibitors...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58846...
this is on cisplatin and gembitacine with a CDK4/6 for ovarian cancer - but it begs the question why not BC
( the above chemo combo being roughly third line chemo in adv BC after taxol and doxil )
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thrivingmama I have not had genomic testing. I will definitely ask. My appointment is at noon today.Thank you so much.
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thrivingmama, I will definitely ask about the testing too. Thank you so much. Starting the weekend felt hopeless, now, starting the week I have info and hope.
Rtchicago, thinking of you and very interested in the outcome of yourappointment, good luck. My appointment is on Wednesday.
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Hoping that this is the year they report good immunotherapy options for ER-positive cancers (and improved responses for the ER-negative ones!)
Tracking the MORPHEUS trial https://clinicaltrials.gov/ct2/show/NCT03280563
Opodivo-EP4 inhibitor trial https://clinicaltrials.gov/ct2/show/study/NCT03661...
and PACE trials (designed for second or thirdline) https://clinicaltrials.gov/ct2/show/NCT03147287
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Cure-ious, keep 'em comin' !
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(Yesterday was exactly 4 years from my first diagnosis 🤔)
Good morning friends. I wanted to update you all on my appointment with my MO yesterday. It went quite well considering. After seeing my liver on the screen I completely agree with the treatment plan he suggested. He was very open and gave me several options but we both agreed on Taxol .
I’m saying this because I could not believe what I was looking at on that screen. My largest lesion was indeed smaller but I could not count the number of new little stinkers that had popped up. 😮. I seriously was shocked and motivated to come at these things full force.
I asked all the questions you guys told me to ask and felt very satisfied with his answers. He agreed to everything and anything I feel I need done. He had been looking into trials for me and will continue to do so.
For those of you considering y90. Please don’t let my experience discourage you. Many women on this site have had great success (my hero Grannax) being one of them. I too can share my experience about the actual procedures if anyone’s needs it.
MO wanted to start Taxol this week but I want the port put in first. So Thursday is the start date for me. Besides, I need time to go buy some fabulous scarfs and earrings. 😊
ANY SUGGESTIONS FOR TAXOL SE WOULDBE GREATLY APPRECIATED.
I’m so thankful for each of you!
Much love and support to you all
Michelle
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Good Morning Rt and too all,
Although this is not the greatest news, I was hoping something less aggressive would have been possible. But you sound so much stronger and ready for this.
Thank you for the update. I’ll let these wonderful ladies give you the advice. Stay strong, brave soul, you are my inspiration
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Rt Chicago,I had my 6th Taxol infusion yesterday, and I am having an easy time so far. There is a Weekly Taxol for stage IV thread It is not very active, but I did find support there as I began taxol.Here is the link.
https://community.breastcancer.org/forum/8/topics/790290?page=1
I did get a port before I began taxol. I was told that my veins were tiny, so the port was a must. I find it convenient since it is used for blood draws as well as infusions. I was given two prescriptions for nausea and vomiting, but I have not needed to take them. I have lost the hair on my head. My eyebrows are now looking thin, and I haven’t had to shave my legs in four weeks. I know most people are very upset about their hair loss, but I have accepted it as a good trade off if this chemo helps slow down mbc. I did buy a wig and several scarves. Many people hate their wigs, but I like mine. I don’t wear it very day. I am given premeds before taxol infusion, a Pepcid and Benadryl pills and decacadron infusion. Their purpose is to prevent an allergic reaction. After those premeds, I have to wait 30 minutes before they can begin the taxol infusion. Taxol only takes an hour. I have to admit that I tend to fall asleep on the couch when I get home. My nap is thanks to the Benadryl,I am sure. I was told that the steroid (decadron) would keep me awake on that first night, give me an enormous charge of energy the next morning, followed by a big crash that afternoon. I have not experienced a my of that, but I know others have. I was hesitant about taking IV chemo, but I have been pleasantly surprised. My white counts dropped the first several weeks, but they have leveled off. My red counts have been dropping, but that seems to have stabilized this week. If they drop too low, I will skip a week of treatment. That is very common. My MO is most concerned about neuropathy and told me to report any signs of it right away. It can become permanent and affect functioning, so we would skip a week or stop treatment depending on severity. So far, I have had no symptoms of it. Some people ice their hands and feet during the infusion because it has been shown to help prevent neuropathy.Let me know if you have any questions. I am no authority, but I am willing to give you any information I can.
Hugs and prayers from, Lynne
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RT..so glad they are hitting those liver lesions hard.
I had AC to get mine under control, then transitioned to Letrozole/ Ibrance. So far, so good. I wish for you the same.
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Michelle- are you doing weekly taxol or every 3 weeks?
I have been on weekly taxol since October. They reduced my fuse once as I am/was anemic but have tolerated it quite well. I even have had sone hair regriwth since the reduction.
My biggestvissues are digestive and with anemia/fatigue. That being said, I findcghe SE very managable.
Feel free to ask any questions you have.
Oh/ it had been great and worked really well systemically for me.
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Rt_chicago (Michelle), I'm glad your appointment went pretty well considering. I pray your taxol treatment goes well with minimal side effects. When will you get your port put in? Did you mean you will get it put it in on Thursday before your first IV Taxol? That would be a big day!
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Aussie-Cat (Victoria) I will have my port put in on Thursday at 8 AM treatment at noon. 😬
Leftfootforward weekly taxol. I'm so glad you've been tolerating it well overall. That does encourage me a lot.
SandiBeach57 thank you my friend
50sgirl thank you so much for al the feedback. I remembered you saying you were doing well when I decided to go for it! I'm sure I'll have many questions for you as we move forward. Prayers for you too!
Kayla250 I will be thinking of you tomorrow for your appointment. Rest well tonight and don't think this is the only option for you. You will have many I'm sure. As far as my emotions they are all over the place. One minute I'm praying and the next minute I'm saying ALL THE BAD WORDS lol. I am at peace with the decision for now and I hope you will be as well. Please keep us posted. If you have any questions for me about y90 I'm happy to share. I would do it again in a second.
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I appreciated the many links I got last week - and I have searched out on Y90. The sad part is that it's definitely not available here in DK. There are some trials on the treatment - but they are reserved for colorectal cancer patients with liver mets. No chance at all to get it as a breast cancer patient! I have tried to find out if it's available anywhere in Europe - but have not been able to find any treatment centers here. Any Europeans on this site that have an idea of where to get it? I would appreciate a direct link as I haven't been able to find one. I have asked in a FB-group, but nobody seemed to be able to help me.
50sgirl
I have had some chemotherapy. I did weekly taxol for about 5 month. It halted the liver mets but didn't shrink them. Like you I found it a relatively easy chemo. Not many SE in the beginning. But the fatigue grew as the month went by. Unfortunately after 5 month I became almost numb in my feet and legs - just out of the blue. I couldn't feel the ground beneath me and had trouble walking. It happened within an hour. The doctor stopped the chemo immediately because of the severe reaction. It slowly faded over the months but has not disappeared completely. As most chemos are likely to give neuropathy I'm really scared that I'll get this reaction again. I don't know if you can be neuropathy-prone to one chemo and not another - or that if you get it from one chemo you're sure to get it from all the chemos that affect the nerves?0 -
Michelle - sounds like you are comfortable and ready to move forward with the plan. phew. I always feel so much better once the plan is in place. I had 12 weekly taxol when I was early stage. I remember feeling a little achy, a little neuropathy, but otherwise handled it pretty easily. Hopefully it goes smoothly and gets rid of all those liver mets!
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lisbet, this site should point you in the right direction.
We live in Italy and here the procedure is offered by only 8 hospitals but it seems to me it's been used for breast cancer for a few years now. The problem in Europe as a whole is that the radioactive y90 spheres need to be imported from the States or Australia so that it makes the operation very expensive. I think I remember reading an estimate of 25k euros per patient
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Michelle- I have been on Gemzar/Taxol for 7 months now. I get a dose dense Taxol every 3 weeks. I feel blessed that it is working and overall I'm tolerating it well. My biggest gripe is really the loss of my hair, but I've finally found a wig I like, so all good there!
I ice my hands and feet, and for me am convinced that this has helped keep neuropathy away for these past 7 months. I even suck on ice chips and think it has helped alleviate some of the taste changes I get from Taxol.
Hi Lynne! Good to see Taxol is going ok for you. I happened to notice you taking Benedryl as a premed for Taxol. I had Benedryl too as a premed my first go around with Taxol and didn't like how sleepy it made me and then I didn't feel safe to drive myself home after chemo. I see that you have a few Taxols under your belt now without an allergic reaction, so just wanted to mention that it has been an option for me to substitute Claritin for Benedryl. That way I'm able to drive myself home from chemo and don't nap in the afternoon which also for me makes it easier to sleep that evening in spite of the steroids. Just thought I'd mention it in case it might help you
PB
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Daniel, interesting to hear Y90 is being performed, possibly even in breast, in Italy. Where are you in Italy? Even in the US, the spheres need to come from Australia. Surgery in the US is coordinated around the shipment of those spheres. I believe there are two types but the SIR Spheres are from Australia only - patent issue, I believe.
Michelle, glad you have a plan that you are happy with. I have done all the taxanes and find they are tolerable for a good while until the neuropathy creeps in.
Kayla, about whether you are no longer ER/PR positive - it is possible that you are not ER/PR positive anymore or that some of your cells are not ER/PR positive while others are, due to the heterogenous nature of cancer cells. However, the majority of us do not actually turn triple negative. We remain ER/PR positive but resistant to hormone treatment. I think of it as if I am driving to work and I have a few route options, one being the ER/PR positive road. When I started my job, that was the go to route as it was the fastest and easiest. However, over time, the road became congested and took so long that I would not make it to work on time and I therefore started seeking out alternative roads and eventually taking a faster, more effective route or, better yet, a new super highway, much faster than all the previous routes, was built that was not previously in existence and I started taking that. The first route is still there, it just doesn't make sense for the cancer to take it as it has learned from experience that it is not a great or reliable way to try to travel to its end destination anymore and it now has better options. However, over time, the cancer could end up going back to that original route if the current route or its other options are no longer as effective for one reason or another or if it notices that the traffic on the original route has eased up over the years.
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Julie, we live very close to Switzerland and the Alps about an hour away from Milan.
Didnt know y'all need to import too. Makes sense why after all it's still a largely unknown procedure. I think I read somewhere Europe is trying to source other radioactive agents that more readily available, which would make sense but probably would risk getting sued over for patent reasons.
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Dear All,
My wife deals with recurrence, strangely not in visceral organs but in her breast. Multidisciplinary team decided to bring in Taxotere (docetaxel) and to come back to Cleopatra protocol (THP).
When you all talk about neuropathy, do you talk about lymphedema (swelling) or something else? My wife experienced swellings (feet, leg skin became hard, swollen) last time, and we went for lymph-massages that helped a lot. Sure, neuropathy (not feeling) comes with lymphedema too but when you say that you ice hands/feet and it helps, you mean that they help for neuropathy? The massage-guy told us that for lymphedema any temperature changes are bad... I just reread my text and it all sounds like I don't know what I am asking for...
Ahh, I simply wanted to ask if anyone could describe in more detail for what symptom relief you use cooling/ice during taxane therapy, when and how you do it, as this is 13th full 3-weekly Taxotere infusion for us (her)? Don't know if Taxol gives similar SE to Taxotere though...I also wanted to say how ecstatic I am to see here so many brave women. So inspiring. Thank you for being here. Please, keep on fighting, science and medicine may be slow (damn too slow) but moving towards right direction for the first time in many years, and we all must hold on - there might be cures on the horizon or, at least, soon MBC might become a chronic disease (they say it is but actually medicine is not there yet).
Saulius
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For those facing Taxol: There are some cold-therapy slippers and socks available on Amazon that I found when I thought I'd be enrolled in a trial with Taxol. Here's one brand that uses a frozen gel pack insert. NatraCure Cold Therapy Socks. I don't know how well they work, but I have seen them mentioned by other Taxol users to fight neuropathy in the feet!
Katty
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I have been using the NatraCure Cold Therapy socks for my feet as well as cold packs for my hands during Taxol infusions. I did find it necessary to add a washcloth between the socks and my feet because they ice was just too darn cold to keep on. I bought an extra set of inserts for the socks and change them half way through the infusion. I am hoping that the icing works as well for me as it has for Pboi. This week I had tumor markers tested for the first time since I began Taxol. CA27.29 dropped from 2932.1 to 1799.4 after just 5 weeks of Taxol. I realize that this is still high,but I am encouraged by the significant drop.
BSandra, The icing is done to prevent neuropathy. I have not read that it would prevent symptoms of lymphedema. My understanding is that the icing helps to prevent the Taxol from penetrating the surface cells in the hands and feet and prevents nerve damage that causes neuropathy. I don't know how well it works or if it works for the majority of people who try icing, but I thought it was worth the try.
Hugs and prayers from. Lynne
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Kattysmith/Saulius
I used those cold socks and mittens during weekly Taxol. They seemed to work well. I'd keep them in the freezer till setting off for chemo, buy a bag of ice on the way, store them in the ice till infusion time (in a big zip lock bag), keep them on 30 minutes pre-infusion, during, and as long as possible after. The cold does start to hurt.
I should fire them up again for Gem/Carbo, as this is the first chemo for which I have gotten more than nuisance neuropathy. My fingers aren't listening to me as I type. I must have hit "caps lock" a kajillion times when going for the shift key. And foot neuropathy makes you feel like you are floating over the floor. I don't enjoy that. Not while sober, at least.
For those who have lymphedema in an arm, and the hand is developing neuropathy, I'd just be really careful to not immerse or chill the hand above the wrist bone. I have been told that heat is worse than cold for lymphedema, but who wants to take chances? For the first couple of years after mastectomy, I slept with my arm elevated. I stopped two years ago. But, for someone with active swelling, it might be a good idea.
Check with your nurses or doctors about icing. It's been almost seven years since I did the cold treatment, and ideas might have changed.
During many bouts of different chemotherapies, I have found variation in neuropathy. One that might give me trouble does nothing to another patient, etc. It is a "Your Mileage May Vary" situation.
Along the way I have been prescribed Gabapentin for budding neuropathy (instead of Lyrica, which my nurse thought inferior), and have been encouraged to take vitamin B12. The Gabapentin seemed the most effective, but I had to take it at night as it worked as a sedative for me.
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