How are people with liver mets doing?
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Bluebird De. I think you know that I had y90 in April and May. It was very successful, August PET showed no uptake. Anything you want ask me, I'd be glad to try to answer.
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Grannax, to answer your earlier question: After a year of NEAD and then a year of slowly rising TMs on Ibrance + letrozole, my scan finally did show definite progression. So I switched to Faslodex + Afinitor, but after four months we could see it was not working. So then my onc put me on Xeloda. That was about 4 1/2 months ago. I had two weeks of Xeloda behind me when I went to see the interventional radiologist to arrange for Y90 mapping. At the end of that appointment that morning's tumor marker number came through on the computer, and it had dropped by more than half! So the IR and my onc said we should save Y90 for later since X was working so well. My TM has been very reliable and has been normal for three months. The IR is keeping me on his radar so we can employ Y90 at the right time in the future. I feel lucky to have these people looking after me.
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Zar when will you know how helpful all this trouble was? So your plan is to be home by next week? Well so sorry you missed out the terrible winds 😉
Artist how are you coping with your pain? Anything makes it feel better?
Hey Lalady1 I'll pm you, thanks for your suggestions. SO what can you do for D AND V? There is nothing stronger than fancy Imodium? Glad you were able to get chemo after all.
Shetland i'm glad things are working out for you. And it's really special to be able to relax with docs. Good for you. Grannax were the results immediate for you?
Jena I think we all adopted this name, actually I've been reading a lot about triple neg, and they have so many good treatments geared especially for triple neg, all new. You have many options. So sorry things changed.
Kaption oh my, no words. Are you remaining in the same treatment?
Anita those pictures, unreal
Babs keeping you in my thoughts as you go to prepare for your Rads. Thanks for keeping tabs on us.
Hey LindaE how are you doing?
Bluebird very curious on what you will find out about Y90.
Yesterday was a big scare again, after spending 7 hours, MRI again this time specific to thoracic, 2 docs visit, Faslodex shot - I left and she stayed on, just as I was getting home, she calls me the bleeding returned. I headed back asap, which was 1 hr, MO sent her to see URO, he was doing proceures, her hubby came running,we spent 4 hrs with much anxiety, then URO came and said, if it's not clotting, there is nothing they could do. This is gonna happen. The Hemangiomas had been fulgarized, and this is expected, something about the scabbing coming off, the truth IS it's so rare for a young woman to have it in the bladder, that they don't really know. In the bladder as is, about 3% of ppl only get it, males more than females, and certainly older ppl. Freaking unbelievable, that's what it is. We were sent home happily and scared stiff.
She was just trying to do all the things that are scheduled and settling with what's ahead, and to have to deal with this level of anxiety, am I gonna bleed at the grocery suddenly? Is this gonna be the night to run to the ER due to retention, pain, clotting? How could this be any way normal?URO said, I'm sorry you have to deal with this crap, but… AND never mind that the 1st URO at that horrendous factory, told us unequivocally there would be NO bleed? Hmm that's weird.
If anybody ever hear of this in the bladder, I'd love to hear. One URO at a dif place, was asked by our friend for an opinion, he said "formalin embolization" , this URO said that's crazy treatment for her, totally inappropriate.
Today D started Rads for the thoracic and Orbital, and I gotta look at the reports than I'll know exactly details. Pray and pray that she should be able to be ok so she makes it to the intended day for Y90. A nurse there was trying to make me feel better, she said just pray, I kinda gave her that look like hmm yeah I am and …so she said don't give up praying until you get what you are praying for. Deep and sweet. But it's hard.
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Lisbet, I see that you started Taxol. I know that took a lot of courage; good for you. I would certainly use some cold on hands and feet, as marylark suggests. My own experience with Taxol neuropathy is that I started to get some tingling and numbness in fingers and toes, as well as random "zaps" in various places on my body, around my fifth infusion. When it got to the point of pain in my fingers and toes, I had completed five cycles and my scans showed NEAD, so my onc said let's stop, and not do a sixth cycle, so the neuropathy does not become permanent. The tingling, numbness, and pain went away after I stopped.
I have only read of one person here on BCO that had the rare lung problem with port installation. Like you, I had my port installed just before my second infusion. I was scared, but once I had it, wow, was I glad not to have the vein hunt and the iv. The pre-med antihistamine put me to sleep big time and my hubby would push me in a wheelchair after infusion because I was so wobbly. I'm a lightweight, just can't hold my benadryl!
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Momall, I'm so sorry this continues to be such a rough ride for you and Dani and the whole family. You guys are incredible. For days I have been silently willing, "Let Dani stay in shape for the Y90. Let her get to that day."
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Mom -
The doctor said, that looking at a population, it takes 3-6 months to differentiate outcomes between people who follow this treatment and people who do not. I will be on US standard of care over that period; therefore, at some level I will never know which treatment I responded to. I see this as a 2-3 year project If I have a good outcome over that period then will suspect this helped. Certainly I progressed fast on Ibrance and letrozol, far less than the mean time from the trials, so I have an active and sneaky cancer. If I am still around in 3 years it's a sign the treatment had impact.
I do expect to come back again. We discussed various the various points in treatment when this treatment makes sense. The treatment can be repeated and has different effects at different points in the evolution of the cancer. When I do return I will better prepared.
I was not able to get full information about the treatment from the US. I just jumped on a plane to come figure this out. I know now there are things I can do in advance to improved the outcome of future treatments if I need to come back.
For the moment I do standard of care and monitor and we'll see how it goes.
Last treatment today included aphaeresis ... they extracted white blood cells to hold in a blood bank for me. Next time they can expand the cells before I arrive so I only need to be here for 2 weeks for the actual infusions.
Thinking of Dani. The next two weeks are really tough. What a strong daughter you have. We are all praying and praying for Dani... that she gets what she wants.
>Z<
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Mom, I have many hemangiomas in my liver, so a biposy of the liver is too risky for bleeding. I have not heard of them in the bladder but suspect it is rare as the URO said. She surely doesn't need additional complications. Are you getting any sleep or rest?
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Shetlandpony and Marylark - thanks for the suggestion of ice on hand and feet. I have read info about this. Do you know where I'll be able to get hold of these? (I have looked on Amazon. com - there are not available there - and anyway Amazon doesn't ship to DK. Amazon in UK doesn't have them either) I don't know of any here in DK that has used them and sell them - and the hospital doesn't provide them.
I cannot bring ice to the hospital - it will be melted long before I get there.
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lisbethand others, I’m not sure if it’s the same treatment, but 2 or 3 Times at my infusion center I have watched the nurses wrap large bags of ice and blankets around one woman’s feet. ( not her hands though). She gives them directions. They are bags they already have. They put under and over her feet.
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Lisbet. It's such a huge step for you to have that first treatment behind you. For your hands and feet, maybe you could buy a bag of ice at a convenience store near the hospital.
Z. Glad you'll be home soon. What will your standard of care be when you get back?
Shetland Thanks for clearing all that up for me. Sounds like you are doing well on X.
Mom. We will all have to pray Dani through EACH day. Thanks for keeping us updated.
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lisbet54,
Yesterday was the start of my 8th month of weekly Taxol. I too am older (old, really). I do have some neuropathy but for me it is quite manageable; some tingling in my fingers and some numbness in my feet. My MO suggested I take Alpha Lipoic Acid and Gabapentin to help with the symptoms. I sometimes have fleeting strange sensations in the days right after infusion but nothing that I would characterize as strong tingling. The Weekly Taxol for Stage 4 has a lot of very good info. I'm sure the ladies there would have a lot of good suggestions for you. Please do not lose hope.
I have not posted on this or the Weekly Taxol thread before today. I have read all of the posts on both threads and am so very impressed with the courage, knowledge and compassion you all have shared. My heart goes out to those ofyou who are so young.
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Zar that's really fascinating. Good for you that now you could help this along, and stay a shorter time away. You are really a Historical figure. Thanks for your prayers.
Hi Lindalou, I've been taking more ambien than usual, but it's better than staying up in the middle of the night. With this new horrendous issue, we are like Really??? The phone is always next to me, but now the anxiety level is raised. What did they you, in your case why do the Hemangiomas come in the first place?
Shetland – Grannax aww you guys – you make me cry how wonderful you all are.
Lisbet you are trying so hard in a place that does not seem equipped to help you. Kudos to you, with good wishes for you find the right formula for you.
SylviaA you are all exceptional ppl.
I read this article about a young doctor, Dr. Pamela Munster, she is a radiologist, and after her mamo she got "the call". Long story short she says–"Doctors live in a world of statistics and probabilities and we often use numbers to reassure patients. These numbers feel very different when it is your cancer". My new Bible, I think I'm ripping the page and kinda glue it to my face in every visit, reminding docs that "patients" ARE people, just like them.
Btw, I just spoke to another very young woman, who has MBC, she is in a major cancer Center in NYC and she told me she begs for Y90, and docs there insist she stick to systemic (although she has progression)
One more thing, while she was in the Hospital, one of the nurses that came in the room said to my DD – Oh she is chemo (I kid you not!), my DD almost fainting, said I'm NOT chemo, I'm a person. If I didn't die then, then….
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Oh Mom, The way some medical professionals depersonalize us at times is painful and insensitive. Every single medical student should be required to spend a month as a patient. Of course, they would not truly learn what it is to be in our shoes, but perhaps that would know how easily we can be made to feel like a part of a herd of cattle or just another person with MBC or a diagnosis label in a computerized report. I realize that they are busy people doing important work, but sometimes I feel like standing up and screaming, " Stop and look around at the faces in front of you. We are real, living, feeling, human beings who are suffering from a disease no one wants and from which we cannot escape. While you are with us, we deserve your time, your undivided attention, your respect, and your help." How are you holding up, dear Mom? I wish I could take some of the weight off your shoulders. I continue to pray for you and Dani.
Hugs and prayers from, Lynne
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Aww Lynne, so sweet of you. How big are your shoulders?? And BRAVO! AMEN, to all you said. They do behave like tweens NOT even like teenagers. Ugh!
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Lynne, if I could put a big neon heart around your post, I would. I am tired of being a number, chart, test result. I am a wife and a mom, a daughter and sister, a good friend to many and a valued member of my community. Look beyond the paperwork at us. We all need to be seen and heard.
Amen sister!
Mary
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Question:
Anyone on taxol using acupuncture by a md acupuncturist to prevent symptoms of neuropathy? If so has it been effective?
Has anyone combined this with Chinese treatments?
I'd appreciate any feedback.
Mom all,, I think of you and you daughter daily in my meditations. Peace, Kathy
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mom - Dr. Munster is actually a medical oncologist at UCSF and is my wife's primary MO. She is pretty good and at the cutting edge of research but its little hard to get her appointment (traveling all the time). She also advised my wife against Y90 at this time but who knows she may agree later. I am sorry that Dani is going through such a rough time. Things will stabilize soon, I am sure.
I do not post much these days as I first need to know if my wife's current treatment is working to put my mind at rest for a bit. I do read all of your posts.
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Kathy. I tried acupuncture fir numbness and fatigue. It didn't work for me but more often than not it died work. No harm in trying👍
Bab
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mom....oh sometimes I wish I could just shake the stuffing out of the hospital bobble heads you encountered. Please do report those individuals who stated "she's chemo" to the charge nurse. Also, as part of a normal hospital stay, you should be receiving a Press Gainey survey in the mail. Please do fill it out and write in this behavior with the date it occurred and note that you reported it. As an RN I can assure you this is not acceptable behavior, ever, PERIOD.
Hugs to all.
Z, safe travels.
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Thanks for the kind answers and suggestions. I called the hospital today - and the nurse I talked to said it was quite normal to have a lot of tingling and numbness the first couple of times - it should go away. However, if it's still there the day before the next dose, I'll have to call them and I'll will have to get a new appointment with a doctor to discuss another kind of treatment. If the tingling doesn't go away in a couple of days it is a sign I can't tolerate taxol.
I just have to hope it's gone by Thursday next week. I'll keep looking for ice bags, but I don't think they are used in DK - for whatever reason.
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Lisbet, so far my research has found the key words to search:
"Elastogel Hypothermia Gloves and Slippers"
Now we need to find a source for them in Europe, or find someone elsewhere (USA?) who can get some and ship them to you...
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Lisbet, I haven't heard of any cases of collapsed lungs either on port install. My surgeon who did this said it was a "very safe" procedure and mine went just fine, although I was pretty stressed out about it beforehand.
Mom, It'a mostly the weakness from neuropathy I'm dealing with right now. Trying to just get out and walk, walk, walk but it's exhausting. Also had the painful bloating from ascites and had to finally go in for a procedure after an 8 week break.....BOOHOO... Praying for everything to fall into place for Dani and the Y90...
Lynne, I feel like printing your statement and pasting it top the walls of every office I visit from now on.
Lately my Onc has me seeing a new PA at my apps. I asked her Monday about the bloating in my abdomen, such as "When do I know it is fluid as opposed to gas and need to go for a procedure". She examined my abs and said "I feel a LITTLE fluid but not enough to go yet as there is a real risk of infection." However by Wednesday my stomach/abs were so hard, bloated and uncomfortable I called for an appointment anyway. They removed 6 liters of fluid!!!! More than ever before. Which has me worried than current treatment is failing. Either that or the one week on one week off schedule I have been doing due to this stupid neuropathy is not enough to hold it at bay. What to do????
Then I got a call from a PT person who said this PA sent in a request for an appt for me due to my lymphodema!!! I said "um, actually I have neuropathy" to which the PT gal got all flustered and disgruntled....I felt like "is anyone paying attention to what is going on with me?"
Letmywife, I hope you get a mind rest very soon!
Shetland, I hope Xeloda works forever for you...
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Artist- Unfair!! You complain the least of anyone on these boards, and its heartbreaking to hear how you are having to deal with all of this! Probably you cannot read anything into fluid levels, maybe try to separate out the problems and keep them in different boxes until its clear what's going on?
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Jena...just wanted to reach out to you as I noticed we have several things in common. Tnbc, just having started eribulin, 14 year old daughter. I do hope eribulin treats you well and kills those nasty cells. It appears to be doing something for me and se's have been manageable once we got the kinks worked out. I get tumor fevers.
Artist...I really hope you catch a break soon and you certainly deserve professionals who are looking out for you more closely. So sad that lack of proper care comments resonate with so many of you.
Mom...I've been reading all your updates. Always praying the best for Dani.
So glad to hear the great news Shetland.
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Artist. It's time to tell your MO that you don't want to see a PA any more. You should be followed by an MD. At one of my Dr visits a fellow came in and obviously hadn't read my chart and said some things that were wrong and upset me. So I had them put in my chart that I will not allow a fellow to see me unless they're accompanied by an Md. My time is just as valuable as the drs and I can't waste it with people who say or do the wrong thing because they don't read my chart!
I find that so many of us don't speak up because we're "captive audiences". I think it's up to us to make them accountable or this will keep happening
Bab
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Agreed! My MO sees all her mets people. I do see the NP when I change treatments and she tells me about se. Otherwise all my contacts are with my MO’s nurse or my MO.
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Babs - you rock!
"My time is just as valuable as the drs and I can't waste it with people who say or do the wrong thing because they don't read my chart!"
This statement should be on all of our charts!!
Our time is not only as valuable as the drs but it is more precious.
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I always see my MO at MD Anderson. Occasionally she sends in a Fellow first (I think so he/she can have initial contact/evaluation experience) but then they both come in together for the consult/follow up visit. We are all on crazy drugs and have cancer related complications. We should never be seen solely by a PA.
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At one point the MO and his NP had a rotating schedule of one mo for him and then her next month. She did not record a mass I pointed out, she did not order the TM labs with CBC, she took liberties to change his orders, she challenged me about the memory problems and ses I was having then. It felt like a test of the wills really. I refused to see her after three times.
When the medical assistant asks all the questions at the beginning I don't think any of that information makes it into most doctor's brains. So we have to repeat and be certain everything on our list gets checked before they are out the door.
Lynne - you are so right. The two oncologists I have had that I liked both felt free to give me a hug, hold my hand, talk to me for an hour and get things figured out. Nothing has been perfect but I need the humanity. It is unfortunate the cancer clinics seem to be the busiest places in the entire world sometimes.
Artist - I agree with Babs. I am reading between the lines, the ascites must have been there on Monday to be so detrimental by Wednesday. You felt it, you weren't sure but you knew something was wrong enough. An ultrasound is simple and needed to be ordered to check for you.
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Nobody is really concerned about taking care of us but us. Period. A person will make mistakes or get distracted or simply be wildly mis-informed whether they wear a white coat or not. The support staff in my hospital have been particularly incompetent but the doctor is distracted too. Way to watch out for yourselves ladies. Gotta do it. Every visit. Every day.
Grannax - I have been pondering my next move as you can imagine. The nice thing is that they want me on a light treatment with minimal immune suppression. Continuing Ibrance is not a good idea because of the immunosuppression. Abemaciclib is an option as it doesn't slam the immune system as hard and there is research showing CDK 4/6 inhibitors are synergistic with immunotherapies.
I could do abemaciclib alone or with hormone suppression. The are arguments for cycling off and on hormonals to increase the amount of time you get on them. Going off hormonals can re-sensitize the cancer to hormone suppression. The fact that abemaciclib works as a single agent creates an interesting option.
As far as hormone suppression goes, I know my onc will reach for faslodex. The monthly shots sound awesome (NOT!) but I am considering tamoxifen. It's another SERM rather than a SERD. It interferes with the estrogen receptor rather than degrading the estrogen receptor. Not sure I need the big guns, especially if I combine it with abemaciclib. I've never been on it. In europe they use it as a first and second line treatment for MBC.
I've been reading this post from Heidi Hill about recent recommendations from Europe.
Tamoxifen can be used as first line treatment. Tamoxifen can also be used with Afinitor for 2nd line, or any line after 1st, as with the following: AI alone, Tamoxifen alone, fulvestrant+palbociclib, AI+everolimus, fulvestrant alone, megestrol acetate and estradiol. It was recommended that fulvestrant+palbociclib can be used as first line treatment.
Here is a study that shows that fulvestrant and tamoxifen have roughly the same efficacy in post-menopausal MBC patients who were previously untreated.
The reference to megace and estradiol is really interesting. In this treatment, you INCREASE progesterone and estrogen and that can shock the cancer somehow and slow it down. The main thing I like about it is that if it works the cancer is almost certainly responsive to hormone suppression as the next treatment .. another trick for cycling hormonal treatments.
The truth is that I never got immuno-histochemistry from my biopsy before I left (see incompetence discussion above) so I don't even know if I am ER+ anymore. Need to get the scan, the biopsy and Caris Molecular Intelligence when I get back. Yay!. Fortunately my met is conveniently located in the part of the liver sticking out below my ribs. Look forward to the mild sedative and humorous banter with my favorite Interventional Radiologist in a couple of weeks.
>Z<
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