How are people with liver mets doing?
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Miami - great sleuthing! and so glad you are finding relief from an easy, inexpensive, and accessible solution!
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WOW, Miaomix!!! I'm so glad that worked; that's an impressive drop in pain level!
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Kattysmith....I have drank another glass of water with another teaspoon of bicarbonate, this time I added lemon juice and stevia so it's flavorful.
I realized that till I get on some medication, I will have to continue to alkalize the body to fight the effect of the lactic acid. I take it when I'm not eating, so it doesn't interfere with digestion of foods.
It works...I'm back to sweating while renovating my apartment....yeahhhh
This is a recent installation, an area where I go to rest, to meditate, and heal. It’s a work in progress...
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Excellent. And your meditative space is the essence of serenity.
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Hi all. An update on my status: I stopped the FGFR trial a few weeks ago that clearly never worked and have been on Tamoxifen for two weeks and Navelbine for one. My liver enzymes and alkaline phosphatase dropped a good amount the first week of Tamoxifen and I found out today, they all further in my first week of Navelbine/second week of Tamoxifen. Super happy about that! Hopefully, this unique combo will work well for me.
Miao, glad the bicarbonate helped. I must try that . . . definitely with lemon and stevia. When I am in need of rapid alkalizing, I eat a single umeboshi plum (aka the "king" of alkaline foods). They also contain powerful probiotics. Wonder food.0 -
JFL - I'm so relieved for you to hear that your labs are all improving (and quickly!) on tamoxifen and navelbine. I hope you are feeling OK on that combo.
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JFL I eat umeboshi plums too...I didn’t know they were alkalizing....I thought they were basically an excellent probiotic. I’m going to eat one now...thanks! So happy to read about the results of you current treatment.
It’s very encouraging to me since I am so scared of medications in general and chemotherapy in particular.
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Mia, I was going to say about the same things as Sunset. Well done!!
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Thrivingmama...Aussie.....thank you for your support!
Folks it works!
After 2 teaspoons of bicarbonate and one umeboshi plum last night, I got up this morning without pain and the smallest wobbling due to fatigue....and what's even weirder....my lower back, where they performed khyphoplasty doesn't hurt as much, and that area was painful all the time!
The fun part is going to be getting a reaction from my palliative care team on Monday, that was ready to prescribe gabapentin.
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Mia, I'm so glad your lower back is feeling better too!
I just want to add that bicarb soda is very high in sodium, so it may not be a suitable treatment for someone with high blood pressure.
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Thank for the warning Aussie...I will start monitoring my BP now...umeboshi plums are salty as well...
For lunch today I'm working on my energy levels since I can't use coffee or tea as they are too acidic....fresh .vegetables juices with one teaspoon of chlorella....rich in potassium to offset the salts...we'll seewhat happens when I start working...
Still very tired and I have to go see the acupuncturist now...
What do you take to offset the fatigue??
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sooo...I do declare that Miss Yu Chen was a real peach this afternoon. As she heard all my woes, she nodded her head fixin on what to do next...so, Bless her heart, after finding all the sensitive spots that made me scream like a wet hen, she started sticking needles...she then stuck two that vibrated in the worst spots, turned on a heat lamp, and left the room.
About an hour later, when she was done, I went downstairs and found myself walking down fifth ave galloping at a fast clip, instead of feeling worn slop out like before I got there.
I walked free of all pains, head held high, just like before that damn letrozole broke my back!. Needless to say the khyphoplasty they did....didn't amount to a hill of beans....if I had my druthers, and if the creek don't rise, I reckon I would go see her every day....Heavens to Betsy....today I was happy as all get out....
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Mia, I'm glad the treatment helped and you were feeling so good!
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Miaomix: what a beautiful spot you have created. Even in the photo it is full of peaceful, healing energy.
Blessings!
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thank you Erderberry...it's true....I experience so much inner peace when I hang out in that area....I immediately focus on healing myself, without any struggles by learning or applying what I already know.
Best wishes to you
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Mia, you are a wealth of information and encouragement.. I can just see you running down the New York sidewalks. Lol
I start my second round of X today. My SE have been zero during this past week. Sure hope it's working because I could rock this TX for a long time. I go to my MO on Friday. I should get my genomic testing results. I hope it shows something interesting and usable. She will probably schedule my PET for after May second round, two weeks from now.
I've had a very busy week. Family staying with me for a full week, I'm usually exhausted after their visits but I'm not, go figure. 💞
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Grannax we have the same mutation ESR1 and I got 9 months out of it...it usually works for 4, but as you know, there are many women on this board that have been NED for YEAAAAARSSSSS, I wish the same to you and everyone else that's starting out on this wonderful tx.
Yesterday, I woke up feeling great, but after running couple errands I had a relapse and barely got home on my own, exhausted and in pain all over again. So now I'm too scared to undergo Doxil on Friday. Do I need additional fatigue, aches and pains, when my right arm is limp and my left leg can't support me properly?
Would it be wise to walk around in contagious hospital settings with a deeply compromised immune system while my heart is under attack by the tx? I don't think so!
I hope MSK doesn't kick me out for canceling twice...but I don't know what else to do.
I want to wait till I review the results of the liver biopsy and the potential new mutations, then propose a different approach: weaken the cancer by simultaneously blocking all the pathways it uses to feed with off label medications and natural supplements, before giving it the coup-de-gras with low-dose chemotherapy....I'm sure at this point in my proposal I will be kicked out of my doctor's office for heresy.
Cure-ious et all....what do u think? Am I making any sense?
Would the right to try, signed into law by Donald Trump, cover this contingency?
Thank you for your patience in indulging my sincere although deeply terrified emotional state.
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I got my answer! My MO called, listened, and told me he will be looking at clinical trials, but doesn't want to wait for genetic results due in 3 weeks! So that tells me, that basically, they don't have new therapies they can count on, that target the various genetic profiles. The state of the arts is stil afinitor and Faslodex.
As I expected, he dismissed my suggestions to block the various pathways all at the same time with off label medications and supplements.
Update....MO called me back two hours later with a fantastic offer that I couldn't refuse....a new generation ibrance clinical trial taking place all over the country that he's conducting at MSK, he thinks I qualify for—f I can keep my blood sugar low....ibrance as a mono therapy....huge amounts of money at stake, as you can imagine.
yesseereebob I answered....I know how to lower and keep my blood sugar under control...will reduce carbs intake, take my metformin and barberine pronto, add to it chromium, and gymnema sylvestre, and for good measure absorb some of that good old fashioned turkey tail mushroom extract!
I'll have my BS levels below 100 by Friday!
Oh yeahhhh....from sadness to hopeful all in a day's work....I ducked my encounter with Doxil for now...
Thank goodness, my MO understood how scared I was and found a solution. He's truly a great guy, a mensch, a huck of kgnasu as they say in Poland....God Bless him!
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WOW that's interesting about Ibrance. Happy for you to give it a try. Let us know how it goes.💞
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WOW Miaomix ! I really hope that works! Is this supposed to be effective without the hormonal in a way that it wasn't effective with the hormonal? or is it going with the theory of being off a CDK for awhile and then it works again?
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Nkb....Mo wasn't specific about it...he said it was a new perfected ibrance. I don't know about making to be used again after resistance. It could be about being effective by itself, which isl lacking in its current incarnation, which would lead to more money for the company, and hopefully one more round of treatment and therefore a benefit for us!
I'll know more on Friday.....there's giving no placebo, everyone gets the drug
Ps: mo confirmed lesion in liver is MBC but the mutations are still unavailable....Those results will be available in three weeks
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Miao, is it actually reformulated Ibrance or a similar drug that is a different name or trial number? Good luck!
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Thank you JFL, I think it's just reformulated ibrance. When I asked what phase would I be joining he said no phases, asfor the paperwork, my MO dismissed my request, because he knows by now that reading the details of what I would have to subject myself to— huge loss of precious time, and the large number of invasive and stressful tests—would turn me off, he is at his wits end with me.
I'm sure on Friday I will sign them without reading the details. I want to be positive about the whole thing...I will however get copies and report back the trial number.
One thing is certain, these trials are being conducted all over the major hospitals.
Another clue is the blood sugar levels....I'm willing to bet, this medication probably raises them to dangerous levels....but like I said positivity is essential in these affairs...meanwhile I managed to bring my BS from 116 yesterday morning, to 104 this morning and I haven't even started drinking the chaga tea.....it has to brew for four hours.... that will lower them to 85.
Oh...one more thing....I woke up this morning miraculously, without any aches and pains and feeling quite strong, except I still have the weakness in my right arm...I guess so much revolves around body-mind auto suggestions
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That's really interesting, Miao!
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what’s going on with you Kattysmith....are you still on that immunotherapy trial? How’s going?
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Hey Miao, I'm still in the trial and am supposed to start my 5th (?) cycle on Monday, which was delayed because of a setback that landed me in the hospital for a few days on IV antibiotics. The setback was due to a huge painful swelling under my chin that is probably not related to the study drug, but to my osteonecrosis of the jaw, but the best diagnosis still is that it was *weird.* It was biopsied and cultured - neither cancer not infection, but deep muscle inflammation. Steroids might have reduced it much more quickly, but they are prohibited on the study. So my drugs have been on hold since 4/24 and I'm seeing a dental oncologist tomorrow. ONJ is scary shit.
SO, unless something turns up in a specific blood panel my onc had drawn indicating that this is a rare SE, I should be good to go on Monday.
Thanks for checking in...it's been really unsettling.
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Hi Ladies, Im almost 21 days from my first Doxil treatment... Not sure if it's working... I've noticed more aching in cancer areas then I did in the past. And I'm still dealing with Fatigue and lack of motivation quite a bit.
Next week I have radiation on my neck and I start my y90 procedure. This is my chance to get the cancer out of my liver because it doesn't seem to be happening with anything else. I'll keep you all posted!
Tina
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Kattysmith....I wish you the best results from your upcoming visit with the oncology dentist tomorrow, and a good to go to resume that trial on Monday.
I now remember your story, when you first reported an odd sensation under your chin...I find it strange that they wouldn't let you use the steroids to deal with it. Don't the steroid clear out of the system relatively quickly?
I had a onj scare too, there's never a dull moment with this disease.
Sending you a warm hug and wishes!
Tina, the symptoms you're describing are typical for chemotherapy, I think. Although I've only taken the capecitabine, that's relatively innocuous in comparison.
I don't know what to tell you about Doxil, maybe it needs more time to be effective. JFL got 7 months out of it and another woman was on it for two years...
Good luck with your Y90 procedure, it has helped so many people....big warm embrace coming your way
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Miao, the mind-body connection thing is great. Need to practice more of that myself.
Katty, yes ONJ is scary. Do they know for sure the swelling was caused by ONJ or did they simply end up there by excluding other potential causes? Is the dental oncologist the doctor that routinely treats your ONJ issues? I haven't heard of one of those before. I just returned from an oral surgeon appointment, after being bounced around the last few months from my dentist, to an endodontist, to a second endodontist and now finally to the oral surgeon. Sadly, I was hoping that a root canal I had years ago needed to be fixed. The only time I was hoping I needed an endodontist/root canal treatment. Nope. Seems I may have what the oral surgeon referred to as possible Stage 0 or Stage 1 ONJ. No one is sure. Something mentioned about "sequestration" of bone seen on the CT scan on both sides of upper palate by one of the endodontists but I have no visible bone exposure, just a small fistula on one side.
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JFL, yes, that was an amazing podcast on the remarkable effect of placebos, I will try to use it when they administer this new and improved ibrance pill, and see if it makes any difference.
I'm so sorry to hear about your predicament I hope they can stop whatever little deterioration was noted.
In my case, I was examined by a ONJ surgeon at MSK. They didn't find anything after they took two weird ex rays that covered in one shot my upper and lower teeth. They recommended that the visible part of one of my teeth that had a root canal be cut down, but my enthodontist found and repaired instead, a small cavity that had developed, so I'm still using that tooth.
After that close call, I decided to reduce the xgeva, from monthly to every three months, to be on the safe side.
I hope all turns out well for you! Hugs coming your way
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