How are people with liver mets doing?
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I'm keeping my kitty loving fingers crossed for you, GD.
Cleocatra is lovely and I'm sure she is sending prayers to Bastet for you.
Peace,
Katty
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gumdoctor. Cleopatra matches your chair. So pretty.
JFL. Sounds like a good plan! Maybe the referred pain is your liver getting mad because Gemzar is attacking the liver mets. I hope so, I had that pain after my first y90 in 2017. I still remember how much it hurt, especially when I tried to breathe. I hope it goes away soon.💞
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wishing you good results , gumdoctor
You are right, no point in fretting before the time to fret comes..
I love cats and it is nice that you have given love to the one that did not use to have it
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left foot forward- good luck with your visit to UCSF. Which MO will you see? Are they the PI for this study.?
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Hi S3K5. So I am moving on to Piqray because of progression on CMF and the mutation that showed up from Foundation One. I have really weird symptoms according to my MD. I always have chemo on Fridays and take Monday off from work as my side effects on every chemo I have done start in about 3 days. On Sunday night (like now), if I touch my skin anywhere, I have pain. Like fingertip pain. Starts at my neck and throughout my body, little headache and a sore throat. I can manage it with 600 mg. Advil and then on Monday the pain is gone however, I have fatigue and nausea which I take Compazine which takes care of it. Zofran doesn't touch it. Then the symptoms are usually gone and every once in a while during the next 3 weeks before the next treatment, I have an occasional day of fatigue and nausea. Pretty tolerable. I have posted what the "specialty pharmacist" sent to me on the Pigray site. I am going to wait a couple of weeks before I start as I am going to Chicago in a couple of weeks for the weekend and I don't want to deal with the side effects while I am there. I am not looking forward to the side effects from Piqray. Uugh. Take Care - Lisa
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JFL - I didn't get the pain with Gemzar. I found it to be very tolerable and I hope everything will settle down for you and the pain goes away. I did have the crazy 1/3 million TTP side effect, but there might be some vascular genetic history on my dad's side that made it easy for me to develop this according to the nephrologist. Watch your platelets and Hgb. Good luck!
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nkb- thank you. Yes, I believe I am meeting with the PI of the study. She happens to be a friend of my MO. Always a bonus.
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JFL. I didn't have that pain with Gemzar, maybe because it didn't work on my mets. Still hoping yours is because it is working.
LFF sounds like a good plan.
Medic What are the common SE of Picquay?💞
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JFL...I had extensive liver mets when I started with Taxol/Gemzar. I had both chemos week one, Gemzar alone week two, and week three off. I had a lot of liver pain initially, not so much though that I had to take anything for it, so not quite the extent to what you are describing. But the pain did eventually go away as the mets were dying off.
I was on Gemzar for 8 months. I had some fatigue and a little nausea but overall it was very tolerable. My second infusion I did develop a pretty significant rash in my groin and armpit areas, but that went away within about a month and never returned.
I only stopped the Gemzar because my scans were stable and the MO didn’t feel I needed two chemos anymore so I’ve continued on with just the Taxol now.
PB
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Leaving appt now. No tx.
Scans showed progression.
Attempting to get itno IMMU -132 study. If not will got to Halaven next.
Gumdoctor
PS Numb...
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So, so sorry Gumdoctor.
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hugs gumdoctor.
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Crap, Gumdoctor, I was hoping for good news - you so deserve it. Sending up prayers that you get into the study. If not, Halaven is doable. With oodles of support and love, JL
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So sorry Gumdoctor. I will pray for you. Always do, but I will pray harder.
I hate to post my update after Gumdoctor's progression, sorry Gumdoctor…..
Today I had my routine visit with my MO. CT in Oct with slight progression to liver met. PET in Nov with no uptake. So still doing the Ibrance Dance- on cycle 24, 75mg. We had changed Xgeva back to monthly a few months back due to elevated TM's and new back pain. With PET results now, we are moving Xgeva to quarterly again. I am ok with that. Don't want to risk ONJ. We are going to continue TM's, but she said they are not real accurate for me, so we are going to do them every 2 months instead of monthly. We will continue to do CT's every 3 months (she said if insurance agrees). I was afraid my MO would get too overly confident and want to stretch scans out. I did not want that. I want to continue to watch closely for any signs of progression.
So next scan Feb (I hope---see what insurance says).
I pray that I will be an outlier, but I know that at some point things will change. And they can change fast. God, it is scary. Like waiting for the guillotine blade to fall.
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Hello Gumdoctor. I am sad you received the news of progression.
I remember a few weeks ago that you said your MO had many options for you if you progressed and she was also excited the Immu-32 trial for hormone positive patients.
It sounds like you are healthy enough to try this trial and who knows, this could be the tx that stops the progression.
And like your MO says, there are other txs to try next. It must be hard when you become the experiment. But maybe you will lead the way for the rest of us while you heal.
So hug your kitties and know you have support out here in cyberland.
S
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Gum... thats just NOT FAIR!!! UGHHH CANCER SUCKS.
Is havalan a strong strong chemo? Did the doctor tell you much about it?
((((hugs))))
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Gumdoctor, sorry to hear of your bad news at your appointment today. You are due for some good news, not this. I hope the trial comes through for you, if that’s what you want. Sending you my love and support!
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(I've been off this thread for a few days, so will just try to pick up on the last page.)
Oh, Gumdoctor, I'm sorry. Progression is so scary. Please remind me, what treatment just failed? What is the timeline for getting into the trial?
Leftfoot, everything crossed that you get into that trial. And UCSF is top-notch.
JFL, I have had that referred pain a few times in the last few months. It may be “referred" but it still hurts! I hope it means Gemzar is working for you. I always have pain with progression and then pain when a new chemo starts to work.
Mediclisa, that skin pain is indeed an odd side effect. I am, since cancer treatment, very sensitive to pressure. A friendly pat on my body can hurt, I need triple yoga mats, things like that.
Candy, I feel the same way. I really hope to be an outlier but I've been around here long enough to know how fast things can change. So I just paid someone big bucks (without looking at the budget!) to do some things in the yard to pave the way for my flower garden that I have wanted forever. Not waiting for “someday" any more.
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My update: I saw my onc and we think Doxil is working because I'm not having pain any more, and my liver does not feel so large and hard. I feel like this chemo agrees with me much better than eribulin/Halaven. At the beginning of next month I get monthly infusion #2, and then scan at the end of the month. My Foundation One and Guardant 360 did come back with lots of interesting information. I now have a high mutational burden. The one we have decided to target is the ERBB2 mutation, as metastatic ILC does tend to develop such mutations and it may be the driver. However, we felt it was not safe to wait for these results, and that is why I started on Doxil. Why not switch to neratinib now and save Doxil for later? She says being on a chemo a very short time could make the cancer resistant to it, so I should stay on it as long as it is working. Neratinib will be next.
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Shetland,
For the future -- I also have both of those mutations (and the PIK3 one too). High mutational burden may qualify you for an immunotherapy trial. It's one of the things that they consider. In reading about immunotherapy, it seems like even in other cancers, if you have a high mutational burden, the immun0 stuff seems to work better.
Good luck on your next treatment, but better yet -- great that this one is working now!!!
Bev
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Candy, that's great news. Good on your MO for not changing tx at the slight progression. May you get many more months on Ibrance.
Shetland, glad to hear Doxil is being kind to you, and that all indications are that it's working. That one is in my future arsenal as well. I've not seen anything on these boards on Neratinib. Does it go by a different name?
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Just catching up now - I'm sure I've missed a lot but wanted MedLisa to know my sister is currently on Piqray and it seems to be holding everything steady for now. Side effects are tolerable for her - diarrhea - but nothing compared to her immunology clinical trial. Wishing you the same.
Gumdoctor - holding you in my prayers.
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mediclisa, thanks for sharing your experience with CMF. I just finished the 2nd cycle on Friday, and you are right - Monday seems to be the worst day. In addition, I was given a shot of Aransep for low Hb counts. That will be first and last one ever! Bone pain was so bad, I couldn't sleep or sit. With CMF, my main SE is nausea and fatigue.
Good luck with your new journey on Piqray. Hope it is a miracle drug for you.
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Jaylea, neratinib is Nerlynx. It is used for Her2-amplified bc, but also for Her2-mutated bc. Her2 and ERBB2 are synonymous, as you may know.
BevJen, my Foundation One report noted MSI (microsatellite instability) stable, but said confirmatory testing should be done. I asked my onc about that since MSH6 germline mutation-associated cancer is often MSI unstable. MSI unstable along with high mutational burden would point to Keytruda or other immune therapy. But my onc said not so much in breast cancer. I intend to do more research. I am considering pursuing a particular second opinion onc now that things are getting more complicated. I attempted this in the past and got bogged down with their requests for most recent records because I kept generating more records, and because traveling seemed so troublesome. My onc and cancer center are great but I’m moving into less-charted territory now.
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Shetland, my MSI is stable, although I just looked through a ton of trials that included that with high mutational burden as qualifiers for the trial. I hadn't heard that confirmatory testing should be done on MSI, and so now, I may look into that as well. Thanks. I listened to an interview of James Allison (the immunotherapy guy from MSK) that was done by Ralph Moss and Allison talked a lot about mutational burden as being very significant in any type of cancer as a predictor of immunotherapy as a possible good treatment. They aren't as far along in breast cancer as in other types of cancers, as I'm sure you know, but they are starting to test it not just on triple neg patients.
Coolbluewater, did you mean immunotherapy trial for your sister? Could you share which drug you are talking about, or which trial? I know that some of us (me included) are interested in immunotherapy and that could be useful information.
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Grannax2, the most common side effects of Piqray is vomiting, diarrhea with some sort of painful rash. Sounds like fun. And I will lose my hair for the 5th time. BevJen - I see you have tried Letrozole. How are the side effects? I am going to do a trial called BYLieve that combines Piqray and and Letrozole. So hopefully, it will take care of the liver mets and additional bone mets. I meet with a onc radiologist for a follow up on radiation to my T12. They do Y90 in that building so I will question him on the procedure
S3K5 - I am hoping CMF will be tolerable for you and it works! Shetland Pony - aren’t the side effects of fingertip pain weird? Of all the drugs I have done, I have never had this side effect. Coolbluewater - I am so glad to hear your sister is tolerating Piqray, I am hoping for the same. I work in a office and on a ambulance and can’t imagine dealing with the vomiting and diarrhea 😳.
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Mediclisa,
I am probably the exception to many others who have been on letrozole. I went on it in 2006 after a single site metastasis to my cervix of all places (lobular cancer is WEIRD). I stayed on it from 2006 to June of 2019, when I was switched to faslodex injections.
My first drug was tamoxifen, which I was on from 2004-2006. I absolutely HATED that one. Had all sorts of unpleasantness going on and never felt like myself. I took to letrozole like a duck takes to water -- for the most part. I did develop some weird things, such as cramping hands occasionally. I also had tendonitis in both of my feet at different times (that's a known side effect, but I don't think that many people get it?) I had joint issues, especially in my knees. My hair thinned. But I stayed on it without a break until late 2018, when I asked my MO if I could take a break for a while because I was very achy by that time (it was probably the start of my mets, since my TMs were climbing at the same time). I went off of it for about 6 months, and felt much better. When I went back on it, I felt okay and the side effects had subsided.
I never had any nausea or stomach stuff with the letrozole. I also took it at night, figuring that if I was sleeping, it wouldn't bother me as much. That worked for me. My son has been an EMT for 10 years (volunteer) and I know from his explanations of his evenings how tough feeling badly can be for you guys. God bless you -- and thanks for all you do to help others. Hope your side effects are not too bad.
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Happy Thanksgiving ladies. It's so good to hear from so many on this thread.
I'm happy to report that my week of misery after y90 on right lobe is now over. I lost 5 pounds in six days, so that tells you about my lack of appetite. The first day was fine because of steroids. I think the anesthesia contributed to some of my problems. I'm going to prepare ahead of time for my right lobe. It was my stomach that gave me the most pain, of course my liver complained about yttrium. Fatigue was an issue but a week of misery is worth it, if it's working.
So, on this rainy, cold Thanksgiving Day in Texas, I am thankful that I feel well enough to go to my BFF's house today. Not our usual tradition, but my son is a doctor so he is on call, my daughter is in retail so she's working today and tomorrow.
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Happy Thanksgiving, Grannax, and I'm glad that I'm glad that your days of misery are over!
We are going to pick up my 95 year old mother-in-law from memory care, and take her to my sister-in-law's to feast with the rest of the family including some who came in from Metairie. All I had to do was make deviled eggs and Waldorf salad, my family's tradition! I had a good appetite yesterday and I'm hoping for one again today!
I'm thankful that none of my family and friends who live in Port Neches were harmed by the chemical plant explosions there yesterday although everyone did eventually have to evacuate. No traditional family Thanksgiving for them, but they are safe and sound.
Peace, blessings of comfort of family and friends and good food to all!
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Happy Thanksgiving to all.
Grannax- Glad you are on the mend. Onward and upward.
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