How are people with liver mets doing?
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Shetland and MacBook
I had a very bad experiences at the Knight cancer Institute. I went through three oncologists there. The second oncologist was the one I was seeing when I was finally diagnosed stage 4. Literally in his words he said "you maybe have three years to live". I asked for scans and biopsy to be done and he told me no it wasn't needed because we already knew I had stage 4 breast cancer. I asked for radiation for my hip because I could barely walk. Hence how I finally discovered it was cancer after being in pain for two years. He told me no. I had to go to radiologist directly and she was the one who got me scans and radiation. And told me I could actually live a long time with right treatment. She was not with knight cancer Institute. Just my personal opinion.
MacBook if you don't mind me asking where is your mother being seen?
Julie
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Sadiesservant - Congrats on the stable and shrinking!
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Jjzn and macbook, that does sound like a bad experience at Knight. I usually recommend the NCCN centers but mentioned Knight because it is an NCI center in Oregon. But it sounds like it would be worth going a little further to Fred Hutchinson in Seattle, or UCSF, UC Davis, or Stanford in Northern California. Macbook, you can just call them and ask about their process for sending records and getting a second opinion, and how much can be done via telehealth.
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Does anyone have any thoughts or input on Milk Thistle for painful liver?? Since my CT scan from Jan and Feb showed that my liver is NOT swollen and nothing looks wrong, yet I am still having pain I am thinking I should now try some MT..... I don't know what else to do. I have pretty much figured out that my husband is right, and what I thought was a gurgling feeling...is not...its more like a "rubbing"... if you place a hand on my rib cage and I take a deep breath in its like the liver is rubbing against the ribs and you literally can feel it happening, he feels it , I have ...etc.... which makes me think it must be swollen...I don't know anymore... but if anyone has thoughts on MT and dosage please tell me.
Also a friend mentioned to me that maybe they hit a nerve when they did the Y90?? I sent an email to the Secretary of my IR asking.... I wonder if that is even possible and if that could be why I still have pain and then would that be forever??? OH MY WORD i hope not.
Thanks,
Nicole
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Nicole, I've always had worries about milk thistle potentially having estrogenic properties. I mentioned that to a brilliant breast cancer researcher (Constantine), who disagreed. The same guy also recommends SAMe. If you go to Inspire, you might find his recommendations for dosage in the breast cancer context. Or maybe if you do a search under that topic and Constantine
Here is a link I dug up that deal with the subject:
Milk thistle debate for BC - Inspire
In response to someone asking about combining Ibrance with milk thistle:
HEPATOPROTECTION
Although there are many such natural hepatoprotectants claimed (especially EGCG, glabridin/licorice, fenugreek, ginseng, curcuminoids, omega-3 fatty acids, Vitamin D3, probiotics, and carnitine), having supporting preclinical (in vivo/animal) data, only three agents are supported by robust human clinical data:
(1) AdoMet (S-adenosylmethionine), otherwise known as SAM-e;
(2) SILYMARIN;
(3) MELATONIN.
Based on the best critically appraised and reviewed clinical data (and my own field experience in dealing with innumerable consults in advanced cancers), the best strategy for amelioration of abnormal liver enzymes, and protection against liver trauma and assault, would be:
(1) begin with 1600 mg/daily of SAM-e;
(2) plus silymarin 140 mg/tid (three times daily)
(3) plus 20 mg/daily melatonin if this is not already part of one's anticancer regimen.
This protocol across hundreds of users has effected clinically significant benefit and allowed active treatment to resume.
SOURCES: As to sources, here are my recommendations based on formulations that meet the requirements of supporting human clinical studies:
SAM-e:
The most affordable source of this very expensive supplement is from Piping Rock:
http://www.pipingrock.com/sam-e/same-400-mg-enteric-coated-201
SILYMARIN
The preparation that meets the specifications used in the clinical studies (standardized to 140 mg Silymarin content) is affordably (with free shipping) from Puritan
http://www.puritan.com/puritans-pride-brand-0102/milk-thistle-standardized- 175-mg-silymarin-003492
MELATONIN
Dosing is 20 mg nightly, but I advise a bi-layered formulation that implements an instant release phase and a sustained release phase to provided prolonged exposure through night. Tablets are 5 mg, so dosing would be at four tablets nightly:
http://www.puritan.com/puritans-pride-brand-0102/bi-layered-melatonin-5mg-0 53098
SUMMARY: And as I have noted here and in my Drug Interactions in Oncology review (available of Academia.edu), NONE of these hepatoprotectants raise ANY safety signals when used concurrently with active oncotherapies.
BOTTOM LINE
Despite the concerns often cited - especially stemming from preclinical data compiled erratically and uncritically by the arguable authority of the MSK Natural Database (I return to this below, and the same failing apply to CAM-Cancer and other comparable sites both of which display an uncritical posture towards the relevance of preclinical data) against co-consumption of silymarin / silibinin (aka, "silybin"), the active components of Milk Thistle, over a dozen human clinical trials (1-11) and reviews (12-15) failed to substantiate ANY of the preclinical predictions that milk thistle (Silybum marianum) would inhibit certain key hepatic enzymes (CYP1A2, CYP2C9, CYP2D6, CYP2E1, and/or CYP3A4) that are also used in the metabolism of many conventional agents, including oncotherapeutic drugs (including palbociclib (Ibrance) metabolized across the CYP3A4 hepatic enzyme). Collectively, the best human clinical data concludes that "Overall, milk thistle seems to pose no risk for drug interactions in humans" [16, in agreement with [1-15]] . (And in the same vein, the claim of potential estrogenicity of milk thistle derived solely from an in vitro (cell) study, overridden by stronger in vivo (animal) and higher data).
Constantine Kaniklidis
Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF)
Oncology Reviewer, Current Oncology
Society for Integrative Oncology (SIO)
Member, European Association for Cancer Research (EACR)0 -
Hi All!
I was just wondering if any of you have the P13KCA mutation? I just found out I do and am having difficulty getting any real information about it. I am on Ibrance/Letrozole/Zoladex combo and am feeling pretty good other than an occasional pain that feels like a stitch in your side when you run. I have my first scans on the 9th since starting treatment. I am a little worried because although the tumor in my breast seems much smaller I never had pain in my liver until I started treatment. Also my ALK PHOS is high now and wasn’t before I started treatment. I hope everyone is feeling good and able to enjoy Easter. TYIA!!!
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Arc, was this on a genomic test like Foundation or Tempus etc? We have a thread for that type of genomic testing https://community.breastcancer.org/forum/8/topics/...
generally somatic P13KCA mutation may mean you qualify for the targeted therapy Piqray (there's also a thread on that on the board) https://community.breastcancer.org/forum/8/topics/...
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Husband WOW!!!! Thank you for all that!!! WOW
I actually currently take (re-started about a month ago) the Puritans Pride version of Melatonin 10mg I take 2 capsules each night
I have a great brand of Milk thistle from a local organic market called Mom's Organic Market the bottle says this: (not sure I understand it)
250mg Milk Thistle Seed (80% Silymarin) 200mg Oganic Milk thistle seed (Silybum mariaum)
so what I don't get is this 450 mg or 250?
Either way I took 3 capsules this morning. I am also thinking of increasing my melatonin to 30mg next week. I wanted to buy the bulk but honestly can be bothered with figuring out dosage etc.
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Nicole, I think what they are saying is that it is 80% Silymarin by contents, so a 250 mg capsule yields 200 mg of actual Silymarin. Can you find a link to the product so we can look at the label?
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Thanks Husband...I hate to sound so stupid...but thanks for explaining that I was thinking some.thing similar like is 200 of the Silymarin and 50mg of filler.....I took 3 today I may take 3 more tonight I want to get in as much as I can before starting the afinitor or verzenio again...it looks like I may be getting the Dexilant that S3K5 mentioned (for ulcer, acid pain)...so I will have to see which drug my MO wants to do.
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dee, thanks so much for posting those resources, i will check them out!!!
shetland and julie- she is being seen by an OHSU doctor though her hospital is typically legacy good sam (i think her doc works with both), so yes her doc is from the knight cancer institute. he did a fellowship at MD Anderson and went to Baylor Med, i don't know how to find someone "better" in the area. i have been communicating with him more but if things don't get better with the next scan i need to take some action. julie, where was the doc you saw who helped you out? the new radiologist seems super nice and competent and i just hope her treatment works.
shetland i'll look into asking those hospitals about telehealth!
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MacBook
Dr Panwola was the radiologist that helped me to get scans. She is with legacy at MT hood. Her whole team is awesome. I tried three different oncologists at knight cancer and none of them worked for me. I switched over to Alison Conlin at Providence.
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Hi!
I continue to have liver progression especially in two lesions measuring 5cm x 6cm and 5cm x 4cm .. I have multiple other ones between stable and better. My I R is favoring another Y90 especially on the biggest one but my MO worries about liver toxicity.
I’m on Afinitor with Aromasin but just switched to Faslodex instead. My tumor markers are creeping up so quickly. The Afinitor despite my worries is not that bad .. I don’t have the typical side effects.. I got the seemingly rare SE of severe rash .. it’s driving me nuts!
I’m not sure what to do honestly.. I thought Y90 is passed me especially that my experience was horrible but here we go again.
Nicole, I read through some of your posts and it seems we have a lot in common as far as Y90. I too did it while being on Verzenio and had a horrible time getting back on my feet. Verzenio suddenly became intolerable and almost skipped a whole month then when I was a little better I resumed.. it unfortunately stopped working anyways shortly after. Prescription prilosec helps a lot with GI pain and heartburn and back referred pain. Until now I use it occasionally as I get these sudden bouts of back pain followed by horrible tummy pain. You can search my name and read through my experience with Y90 if you’re interested.. I don’t remember things as vividly now.
but reading about your recent experience is scaring me as I’m getting PTSD remembering Y90 and the fact that I will probably go through this rabbit hole soon0 -
Nouzay....sorry you also had a rough time with Y90 ...it sounds like you were thinking I was also on Verzenio when I did Y90? I wansn't... I did Y90 in Dec 22 and tried Verzenio 2 weeks ago..I was off all treatment and still am going on 4 months now...
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I hope everyone had a Happy Easter. Ours was very different because my son and family were in Key West! But I was too tired to do a big Easter dinner anyway so it was fine for me.
I’m getting closer to the big reveal, both my scans are done, so I only have two more days to wait for results. I feel a little better getting those checked off my list. As usual, I know I’ll feel better when I get a game plan. But, can’t stop thinking about the what if there is no game plan? Don’t know where to put that thought.
I’m more and more impressed at all the information on here. Y’all are such “smarty pants” with research. Me, not so much.
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Happy Easter from Key West
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My grandchildren are growing up too fast
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So I cannot believe this...but I cannot get Dexilant for my stomach my insurance wont cover ..there is no generic and its $500.00...
I want to cry my stomach needs this...
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Nicole, there might be financial assistance available for that drug:
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Nicole,
Two thoughts: call your pharmacist and see what is a good substitute; then call your MO and see what she says.
alternatively, see if your MO's office can call the pharm company and see if they can get the med for a reduced price.
Good luck
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Thanks Husband I will look at that... I am on hold with the prescription company now trying to fight this..I told them ...I have taken everything this is the next step...they are supposably calling my GI doc back...I told them...I cannot take my cancer meds without this I NEED IT....
Bev..there is no substitute...I already asked just Nexium, Prilosec and Protonix I have taken all of them at the highest dose the Dexilant is the next step.
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So many battles to be fought. My wife spends some days on the phone trying to sort out procedures, tests, bloodwork results, etc. Just exhausting.
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Husband EXACTLY!! My stress level is through the roof...i literally said to the guy ....So basically you just want me to die...bc I cannot take my treatment without this drug for my stomach....look at my history I was already hospitalized for stomach issues and took all of the 3 drugs they say must be taken before this drug.... I NEED THE DRUG." finally he said I have to send a letter to my GI DOC authorizing them to fight on my behalf and he has to WRITE a letter of medical necessity and then MAYBE they will approve it ...its absolutely sad. Seriously .
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Oh Nicole I am so sorry! I can’t believe it. We have a disease that is incurable and causes discomfort amd pain AND in addition we have to take treatments, with terrible side effects, to survive as long as we can, and they’re denying you some thing that’s going to improve your quality of life. Amazing! Maybe a quick call to the G.I. doc will get him to write a letter and fax that over ASAP so that the insurance company can process it and get your meds. If that’s likely and it will take time, maybe you could paythe money upfront and get reimbursed for at least the first prescription?
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Hope yes...I already spoke to the great nurse at the GI office..they first need my signed letter authorizing them to appeal it...I cant get that to them until tomorrow. I could pay upfront but if my appeal gets denied they wont reimburse I cannot chance that.... They did say they have samples I can try so i think i will do that.
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Nicole. Try RX ASSIST. I got a drug I needed for diabetes for a huge discount through this company.
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Nicole, that just sucks. I hope you're able to get drug assistance.
Dee, I'm way behind in the thread, but big congrats on the clear MRI!
Hugs for those who are struggling with, life, scans and pain.
Big yays!! for anyone receiving good results.
I will finally have my scan on Wed. to see if Verzenio has failed.
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What’s making you think Verzenio may have failed Bliss? Are you having symptoms? I also have a scan on the 15th and my head is in the same place although it’s Xeloda instead....I think because the Faslodex failed so spectacularly after such a good run on Ibrance.
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So, I got this on my portal yesterday it was automatically sent in test result I thought they would hold it until I saw my MO on Wednesday I don’t have the abdominal MRI results yet
One of my questions is answered Eribulin is not working The what do we do now question will have to wait until Wednesday
Another TX has failed Where do I go from here? I think I need a break from TX My last infusion really did a number on me I think my extreme fatigue was from cumulative effect of chemo. I’m tired, very tired But, of course, I will go to my MO tomorrow and listen to what she has to say. My daughter will be with me
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So so sorry Grannax..I thought Eribulin would hit it out of the park for you ..... I am sure you and your MO will come up with a good plan. I know you like Y90 and respond so well is that an option?
Thank you Bilss.
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