How are people with liver mets doing?
Comments
-
Overall, Z, that is excellent!! And terrific that the girls go on with their lives, because when the long-term fix is upon us, we don't get a re-do on the life we led when it was all an unknown.
I still maintain that brain bugger is no cancer, you don't have the subtype that would readily do that.
When is next chemo, and then after the next scans, you can relax and enjoy the summer!
Are you still considering doing the Rosenberg/NCI trial for adoptive T cell therapy? I think you had to have had some chemo first, so you will be eligible now, if interested...
I am currently writing grant applications without knowing if I will even be alive and healthy enough to do the research if it even got funded. Stuck in limbo-land, not quite ready to give up the day job but in my profession you plod along, planning things out years in advance...
Will have to check out those hot springs..
0 -
rpoole1962 - I use Nature's Own Milk Thistle 35000mg. Not sure if its an Australian or American brand though.
0 -
Z -
Some of your gastric symptoms could be chemo-related gastroparesis. The muscular contractions that move a bolus through your bowel slow down, so you feel bloated. For me, it gets more painful from the ascending colon into the transverse, right by the liver.
After a month of Abraxane, your TMs on the CA 15-3 are in the 400s, about a hundred point drop? And, imaging shows a much improved liver, after a month? These are good findings! I'll bet the next round of TMs brings continued improvement. It's too soon to call plateau.
The taxanes chew through potassium and magnesium, and this could be causing your muscle weakness and cramping.
If you are anything like me, you like it when things are definite. The lesion is not definite. Your liver response is not definite (enough). Argh. But, you are pretty damn kick-ass, and you will get through this.
There's nothing as healing as a good old fashioned weep and clean. It's the only thing keeping the Board of Health out of our house at this point.
It is so good that your kids are doing well. That's a huge joy.
0 -
Z Thanks for the "mixed report". How to absorb all of it and continue to be you? Don't you get tired of being wonder woman? To me, although you are truthful about your struggles, I think you will keep on being wonder woman no matter how "mixed" your results are. I'm so glad you finally have doctors who seem to be partners with you.
0 -
Z overall your response is excellent! It’s common to have massive tumor cell die off at the beginning and then continue a slow and steady decline. Lymph nodes that came a go sound reactive. I predict things will continue to regress.
Start magnesium for your cramps it really helps mine. Soaking your feet in cold water during infusions will help keep neuropathy away. I put my hands on ice because I couldn’t think of another invention.
Now that you house is all clean you can take time for yourself and relax, haha that’s not you!
Gentle hugs to you. This disease is crappy and having moments of complete terror and feelings of being trapped have to surface. We can only push it down to face the day for so long.
Onward you go, what choice do any of us have!
0 -
scwilly: how was yourMO appt on June 6th? What is your strategy going to be? I have been thinking about you and praying for you.
0 -
z: hang in there. I know our journey feels like a roller coaster ride, up and down. You are a strong woman who fights hard. Hoping your TMs continue to drop and scans improve
0 -
hi! Joining the liver metsters thread. I am er+, her2-.Carbo/gemzar did nothing for me after 6 cycles. I had a pet scan and have new lesions in liver, many bones and in lymph nodes in my neck. I’ve already been on the orals , has a very good run on xeloda for 2 1/2 years so hoping someone could tell me what chemo you moved to after others have failed. My onco is suggesting doxcil or navelbine. Has anyone gone back to orals at anytime ?
Thanks for any advice.
0 -
Z you are so real, strong yet Human, how about that?! How wonderful that your DD2 has it all together. You are a wonderful mom, she learns so much from you. She is worried, don't let it fool you, but she is dealing with it which is what life is about. Thousands of warm hugs, with wishes for you to feel better asap.
Curi-ous you have so much work to do, yes keep drudging, we need your input on the latest stuff.
bethmom if your question is if it's possible after Xeloda to go to the other txs sure, my DD went to Navelbine, no reason not to. Sorry you have this new findings, but you are certainly with great company here.
blainejennifer i like your explanation for Z, it makes sense. Why can't doctors think like that.
My Goodness i miss everyone! Didn't hear from so many of you for so long....
0 -
bethmom-I am the same as you er pr + and her2-. When the cancer first came back 7 years after orginally being diagnosed stage 1 in 2005 (I had a lumpectomy, sentinal node biopsy, 6 weeks of radiation, and chose to have a complete hysterectomy, including ovaries, at a premenopausal 43 years old, then put on aramotase inhibitors to stop the adrenal estrogen, stopped after 3 1/2 years due to side effects). It came back in my spine, lung, and lymph nodes (now in my pelvis, hips, ribs, scapula, collar bone, chest bone, and skull). I was having back pain. After a week on predisone, from my primary, not working, she sent me for an x-ray. Then an MRI. I had a compression fracture in a thoracic vertebrae. I had it repaired. I also was getting short of breath, and had a thoracentisis in the right lung, to remove the fluid. Both specimens they took showed breast cancer cells. My first treatment was faslodex injections (OUCH) and monthly Zometa (bone builder, after 2 years, I now get it every 3 months) iv, both given the same day. I was on that one for a year and half. Next I was put on femara, at 3 month scans, it showed it did nothing. Next I went on Xeloda, it lasted 2 1/2 years. Next I was put on Ibrance, lasted 6 months. Next was Doxil, at 3 months scan, it hadn't worked. My current treatment is Taxotere (first one to make me lose my hair, although, the last 3 had thinned it quite a bit), I've been on this a year now. 6 years at metastatic Stage 4 now. She said gemzar would be next for me, when I asked her. I will go down to Dana Farber, and see the breast oncologist for a second opinion. Only once did they not agree on the same treatment (the femara was Boston's, the Xeloda was the local oncologist). Still driving, long walks and standing for long causes me lots of pain, so I got a wheelchair. I use it on vacations, or if we are doing a lot of walking (such as at bike week here on Sunday and the breast cancer walks, my husband built a trailer for the back of our trike, and straps it on there, works great). Just remember we are LIVING with cancer not dying from it!!
0 -
Hello everybody, sorry to interrupt the flow of discussion here. I have been passive participant of this thread since my mom's MBC has progressed to liver 4 months back. Today i am posting to enquire and seek guidance for my mom's treatment.
My mom is 62 years old and first diagnosed with disease in 2nd Stage in year 2007. That time it was detected as TNBC (2007). Cancer had recurred in metastate in Sept, 2015. And it was ER-PR positive (20%) and her2 negative.That time it was discovered to lung and multiple bones. Till now she had been on various oral and chemo medicines (Taxol -2007) (Cytogem, Carboplatin, zoldonet, pegasta, megastty, femara, palbace, navelbine). In last few PET scans, disease was reported progressive.
In Feb, this month, the disease was progressed to Liver (measure RL- 17 x 18 mm, Lt- 16 x 24 mm) with no sign of pleural effusion in ultrasound of abdominal. That time, our ONC has decided to try the disease for TNBC and suggested 3 cycles of Halaven.
Last month my mom has completed 3rd cycle of Halaven. Since last few weeks, she has been complaining about bloated stomach and have measure constipation. She feels shortness of breath and get tired with few mins walk. We did ultrasound of abdominal today, as we have scheduled ONC visit on this friday. The ultrasound report is not at all good. The disease seems to be progressed in Liver as new measures are (RL-26x 23 mm & LT-30 x 28 mm) with presence of pleural effusion in left side. It look like that Halaven did not really work for my mom ??
As a family, we all are feeling down today but we are still hopeful and want to fight with this till end with my mom.
Thank you so much for all your time to read this long post. Prayers and hope for everyone.
0 -
sharmai,
One possible option is to consider a MRI of liver and a CT scan of the lungs.
Ct scan will show in detail anything in the lungs and the MRI is the same for the liver.
Perhaps a Inventional radiologist could offer a treatment plan such as TACE or Y90
and consider consulting with MO at a research facility for possible trials for your mom.
Personally, I wouldnt rely on PET and ultrasounds for my diagnosis.
You are a wonderful supporting daughter , don't give up hope
0 -
blainjennifer - that was a heapload of useful advice. The idea that Abraxane has slowed down my gut and caused gastroparesis accurately describes what I feel and the response to yoga. It also makes sense given the muscle weakness I feel elsewhere ... I can see how that would translate to the muscles in the gut and cause these symptoms. The pain I feel in the ascending colon into the transverse colon is just as you describe. Just did another hour of rolling around into various poses to get things moving. Will have to re-dedicate myself to my yoga practice which has slipped a bit.
Thank you all for the support. I had a CMP and CBC panel today. Liver markers at normal or close to normal. That's impressive since Abraxane will elevate these markers independently of the cancer. I doubled down on the NAC, Silymartin, Alpha lipoic acid regime this past week. I think I am seeing it in the bloodwork and have a winner as far as supplement strategies go. My WBC and neutrophils were in normal range, which is surprising given that my last IV was 9 days ago. I have some immune stimulating strategies that seem to be working. Good bloodwork, less stress. Still waiting for TMs.
I fell asleep lying over a bolster today and got a great two hour nap. Again. Whenever, I am tired but can't get a nap it works. If you have liver mets, any enlargement of the liver, or any gut issues consider investing in a bolster and spending some time learning how to use it ... I just think the gut needs more space then it's getting. Also, apparently, the chemos are messing with movement through the gut. Combined this is clearly causing me abdominal issues that extend into my nervous system, but it is solvable.
Doing pretty good thanks to all your support ... I could not make it through this haunted house of mirrors without you guys.
>Z<
0 -
hello - once again, I have to apologize for my absence from these boards. When I was released from the hospital on extended release morphine, steroids, laxatives, etc., I literally could not manage to read or write a single thing—my eyes would close to sleep as soon as I started reading. I even found myself falling asleep at redlights—which told me I had to hold off driving for a bit. The fatigue was nothing I had ever experienced, and I’ve been pretty much out of commission, other than a quick outing here and there, and it takes EVERYTHING out of me. Ive been pretty down in the dumps...knowing that there’s very little I can do to help my family, and my dd wants me to play with her so often—it breaks my heart. I’m now calling in family and friends to take her out, and keep her busy and happy.
My Tempus sequencing finally came back last week, and I have multiple mutations...ESR1, CHEK2(genetic), FRS2, PTEN, MDM2, and FGFR1. There’s on clinical trial out of U of Wisconsin, which focuses on the PTEN, and involves parp inhibitors. Still waiting to see if I can get in—it’s a phase 1 trial.
Meanwhile, I started Halaven while we wait. I had my first treatment last week, and went for the 2nd treatment today. Neither my usual nurse or my MO was there. I had a new nurse that I had never seen before hand me blood results and tell me my neutrophils were .1, and she’s not sure they’ll move ahead with treatment today??!!?? .1!! Even I know you have to be at least .9 to move forward. She made me wait while she pages my doc, and I finally got up and said I’m leaving—knowing I won’t get treatment today. She rescheduled me for next Week. I asked about a neulasta shot, and she said they would do that next week if they don’t come up. I guess that explains a lot of my fatigue.
I took myself off of the morphine earlier this week, and am weaning off of steroids. I just want my energy back.
Z - glad you found the right supplements. I’m going to pm you a little later to get the brand/doses you are taking.
Hope everyone else is doing well—so happy to hear the good news, and heartbroken over the not so good news. Prayers to everyone! Xox
0 -
I've been getting STRONG muscle cramps mainly in my legs, sometimes other places, with my cancer recurrence/mets and chemo. I've been taking magnesium supplements daily and drinking water with added electrolytes after I exercise, it seems to help. A heating pad sometimes helps too.
I started on Eribulin and Pembro trial today NCT02513472. So far, no ill effects. Pre-med with zofran. 2 weeks on 1 week off. But the 2nd cycle will start late so I can go on vacation. I was able to go out for a walk in the woods and came back with a couple of ticks...I hate ticks. I'm going to take a warm bath and drown any additional ones I haven't found yet.
0 -
Katharine sounds great! What a relief. you know your body so well. It's so exciting that you are getting these better #s. Your DD2 left? Take good care.
KC you had a rough going, and no wonder with so low a count. She could have given you the Neulasta. Who are they hiding it for?? If not now? Hoping for better news next week.
0 -
sharmal, your Mum is lucky to have you both. Wishing you all well x
0 -
Minnie31 , this community is full of wonderful people. I can not thank enough you guys.
Prayers for everyone.
0 -
Z, thanks for the link to the yoga poses. My abdomen is not right, and maybe this is what I need.
KC, hang in there. Such tough going, but keep the chin up.
KC1010, great news on the new testing. More information, more choices, more hope.
I am starting to get nauseated. I normally have an iron core stomach, so this is a first time in almost 10 yr thing.... Right now I am on a baby dose of Verzenio. I think it is liver issues. What does everyone do for nausea???
Therese
0 -
KPW3 ... there is some advice on the Stage IV fitness thread that worked for me.Scroll back a few pages and you will find it. Most of us get the leg cramps when we lie down to rest or sleep. It seems that a scented bar of soap helps a lot of people as do supplements with quinine. I am doing both. I hold the soap to my nose when the cramps come on. It distracts the mind from the cramps? With time the soap has actually taught me to stop the cramps without the soap just by thinking of the soap. Seems similar to the thing where you can't chew gum and walk at the same time. Leg cramps are manageable.
KC1010 - Just want to send support and hugs and generally give you a boost.
Hooked up to Abraxane as I write for 2nd dose of 3rd cycle. I've been up since 4am cleaning the house with the assistance of my wonder of a cleaning lady. Got a lot done but a little low on energy coming into my IV. I usually jog in place from the time they hook me up, but there isn't any medical reason to until the meds approach the port. Watching the white stuff come down the tube ...
>Z<
0 -
Thanks >Z<.....I've tried the quinine and it somewhat worked and, I am a bit skeptical on the soap....but should try it since it can't hurt. These cramps are different than cramps I've had in the past that I've been able to stretch out. These cramps come on suddenly and are excruciating if I try to move my leg to stretch them out, it actually feels like they are about to explode....I scream out-and I had my port put in without pain meds, just lidocaine. I guess I've thought if the problem is likely low electrolytes I should just supplement with K+ and magnesium. It does seem to happen after hard exercising. But am considering the soap.
0 -
Zarovka, are you still fasting prior to chemo? If so, can you tell us again how long you fast for before and after, and what liquids you consume during the fast?
0 -
Sounds like my cramps. I was pretty skeptical about the soap myself but it can't hurt to try. For me it has developed into a mental exercise of deliberate distraction ... the soap is just a tool. DGHoff starts the discussion towards the bottom of page 56 ... You may not know DGHoff well, but she is a well read lady not inclined to fall for nonsense.
Yoga helps but at some point it wasn't enough.
In any case, 100% empathy coming from NM. The cramps hurt.
>Z<
0 -
Havent been here in a while. On xeloda. Multiple liver mets have cleared on one side after 3 cycles. Other side looks okay and stable. Liver has changed shape but all else okay. On 4000 a day. Was on 4300 which was unbearable on hands and feet. Now much better. Interesting to hear about all the other drugs and successes. Am keeping notes for when i need to chamge again. Best wishes to everyone
0 -
KPW3, you may want to ask for a more advanced electrolyte panel of bloodwork done. I had excruciating cramps like you describe in my sleep when I had hypercalcemia from advanced bone mets. In the process, I learned that calcium is an electrolyte which becomes dangerous when it is low or high and that there are many other elements in our bodies that are considered to be electrolytes beyond the few with which I was familiar. Something could be off from your medications. You may also want to try sublingual Vitamin B complex drops.
Celebrate, I also have a strong stomach and find that in the rare instance I have nausea, ginger candies work better than prescription anti-nausea meds. I ask for ginger candies when I get my infusions at my cancer center and take a handful home. I also sometimes buy candied ginger squares from Whole Foods which are very strong but effective. I don't like the taste of ginger but now that I find it so helpful, the taste no longer bothers me.
Lillymillie, congrats that X is working for you. Did your liver change shape due to the tumors shrinking or is it caused by something else? Your X dose is high! It is rare to hear doses above 3000mg per day.
I had my second Y90 on Tuesday and am praying that it will work. Feeling on edge lately unable to make sense of what is going on with my labs and everything else.
0 -
JFL-I went directly to my recent labs to look at calcium, it was smack dab in the normal range (taken earlier this week)....magnesium was too but I supplement with it and wonder what it would be without supplements. I hope the Y-90 kills all those nasty cancer cells in your liver JFL
Taking supplements with pd-1?
Does anyone have any thought about taking ibuprofen with pd-1? Or supplements, I normally take cucurmin, melatonin, vit D3, multi vit, and Claritin.
0 -
Question: Is anyone on abemaciclib (Verzenio) primarily for liver mets? If yes, has it affected your liver enzymes or bilirubin?
Lilliemillie, so happy to hear X is working for you.
0 -
good news on my MRI and CT scans. Tumors shrinking or stable. Staying on carbo and Gemzar for right now since they are still working. Praise to God!
0 -
Wonderful news Hartrish!
0
