Triple Negative Stage IV
Comments
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I think it would have to be pembro. As I understand it, in the US MO's are allowed to keep someone on atezo if responding but I don't think they can start them on it? That's how I understood where we are with the atezo FDA withdrawal...
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Thanks Moth.
Has anyone used IV Vit C or IV mistletoe...??
Moth..also are you able to get Trodlevy for TNBC there where you live?? If so or even if not...is it something you would want to try do you have any thoughts on its effectiveness?
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Nicole, Trodelvy is in process of being approved in Canada & my MO is hearing it will be this Dec 2021 but the approval system here is slow & I wouldn't be suprised if there's another delay..
She definitely wants it for me for when I progress & I agree. I want to try it too because for the people it worked on, they got amazing response. (the diarrhea tho - oooph, sounds miserable. And there are people for whom it just doesn't seem to work & I don't think we know why this is.)
Right now I'm still stable 19+ months. Next scan in Dec. Also not sure whether to do xeloda first when I progreess or go straight to Trodelvy. Many decisions for me ahead.
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I did Xeloda..when I was ER+ PR- HER2- and it did nothing for me.... I wonder sometimes if it would be different now that I am TNBC? ..I also wonder why it is used for TNBC and hormone positive bc ??? Strange.,...?
I didn't hear the dirraeh was an issue with Trodlevy however I did hear that nausea was a BIG issue.... hrmmm... I tend MAJORLY torward constipation and all the drugs that I have done so far that were suppose to cause diarreah have not they have berarly made me "regular"...
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well, xeloda is chemo, it's closely related to 5FU chemo, so it doesn't matter what hormone markers. It's an antimetabolite and attacks cells in their S phase of cell replication
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Moth...yes thats right I forgot it was 5FU.... I remember that is why I was allowed to take antioxidants with it....
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If I understand my results correctly, it says CPS >/= 1% and </= 10% for PD-L1 (22C3)
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dutchiris, hmmm. I don't know if that's enough or not. I'm curious what your onc says.
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For those in the USA..that may be getting put on Abraxane NOT if you are ALREADY ON IT...but those getting put on it...they will not approve it and you will have to go with something else...there is now a shortage of Abraxane from the pandemic apparently....yup my oncologist told me this yesterday...
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Yes, GR4C1E on the mets to lung thread has had to get Taxotere due to shortage of Abraxane. It's short in Canada too - no word yet if I'll get mine on the 14th.
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Anyone talking desloratadine - can you give me the MG dosage ?
Many Thanks!
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Moth is correct. Due to the Abraxane shortage, I had a Taxotere infusion last Thursday. I do not remember feeling this poorly the last time (2011/12). Every bone, joint and muscle fiber in my body aches and I feel dizzy and weak. Could be the Decadron crash or the Taxotere or the combination of both. I hope they get the production lines up and running again soon!! I'm scheduled for another Taxotere infusion AGAIN on the 28th.
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Purple I take Claritan D and/or Claritan.... the D is 12 hour the non. D is 24 hour
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purple, I take 5mg of desloratadine under brand name Aerius in Canada
Nicole, claritin is loratadine, not desloratadine. It was desloratadine that performed esp well in that study I posted a while back
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MOth...they are both Antihistamins...
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yes but that study looked at several antihistamines head to head & desloratadine was best
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Moth and Nicole, what do you take antihistamines for? To minimize the SEs of Xgeva? I don't take anything prior to my chemo or Xgeva.
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I have seasonal allergies so I was taking it intermittently for years. once I started atezolizumab they put me on it permanently. Immunotherapy can cause a lot of allergic type reactions.
And then I found that study that showed that desloratadine seems to improve survival in breast cancer patients so now I'm not going to stop even when I come off atezolizumab.
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S3K5. I have taken Caritan D for many years for post nasal drip...I have also taken CLARINEX which is the desloratadine Moth was speaking about...as far as allergies I felt the Claritan D worked better my pharmacist said the Clarinex and and Claritan are EXACTLY the same...
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Desloratadine and loratadine are not the same. just like nab-paclitaxel and paclitaxel are not the same. They're in the same family and both are effective antihistamines so from that standpoint I can see a pharmacist saying they're close enough but they do not havequite the same chemical structure. For years desloratadine was by prescription only in many countries, while loratadine was OTC - it's a different enough drug that it didn't get OTC right away.
"Desloratadine in particular stands out as a candidate for cancer therapy based on our findings, and its known properties: it has the highest H1-receptor affinity among these antihistamines"
loratadine was the 2nd best in that study https://www.tandfonline.com/doi/full/10.1080/02841...
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I am TNBC metastasis to bone only in (8/19)
Taxol every week for all most three months but could nto complete.
I am on Xeloda for two years.
I started and foot syndrome so my oncologist will reduce xeloda to 1000mg
CEA level was alwasy 20 past more than a year and past three weeks its been 50. Very very nervious. If Xeloda is working if not is there any other chemo available.....
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Hi Rain, I have compiled a list of treatments for mTNBC in this post https://community.breastcancer.org/forum/8/topics/...
you should be eligible for Trodelvy after 2 chemos in the metastatic setting. Are you in the US? That would be the recommended treatment next. In some other countries, Trodelvy is not yet avail so then people need to work through some of the other chemos in the list
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The 28th is looming. I am in full panic mode looking forward to Taxotere infusion #2. My MO wanted to "talk" to me today before the impending doom. I'm hoping he wants to write me some (translation: many, many, many) prescriptions so I can sleep through the next four days after chemo!
I have to stop googling "Abraxane shortage". The more I read the more pissed off I get. I keep getting stuck on the words "temporary allocation." I mean, who decides? Does the manufacturer, the FDA, the MO? Who decides who gets it and who doesn't? Plus, Bristol Meyers Squibb is supposed to provide an update in November? Let me guess, somewhere between the 1st and the 30th? As if Taxotere wasn't enough torture.
My labs are tomorrow. I'll feel better if my CA27-29 dropped since the first treatment. It dropped to 19 during Abraxane and jumped to 30 during Gemzar where it has hovered ever since. If it dropped just 1 U/mL I can convince myself to push through this. I do plan to be pissed off the entire time, though.
I guess the upside (if there's such a thing in cancerlandia) is now I've gone from Abraxane to Gemzar, back to Abraxane to Taxotere, I've bounced back an forth through 1st line, 2nd line back to 1st line, and then 3rd line of chemotherapy and technically, that opens the door to Trodelvy.
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Hi GR4C1E, the abraxane thing is so frustrating! We have shortage in Canada but I did get mine on the 14th (I'm on q 21 days right now). Not sure if it's because not used as much here that they still have inventory. I hope that your cancer center gets some for you soon.
About the Trodelvy, my oncologist at one point said that in talking with other oncs, some were counting chmeo's from early stage treatment because the indication didn't specifically say chemos in the mets setting...
Fingers crossed for your labs tomorrow. I'm trying to stop looking at my tumor markers. They bounce around +/-15 points and it doesn't necessarily seem to linked to anything so they just stress me out.... Are yours good predictors?
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I'm just jumping into this Stage IV thread to provide some clarification. Desloratadine is the active metabolite of Loratadine. So, although different molecules they have the same active ingredient. Desloratadine was marketed as a way to keep the prescription drug market when loratadine went OTC & generic. Now, they are both OTC and generic.
Abraxane shortage is a two fold problem. The FDA found manufacturing problems at the Bristol Meyers Squibb plants in Illinois and Phoenix which manufactured Abraxane. In addition there is an international dispute with China regarding a generic product between Bristol Meyers Squibb and Beigene. Allocation means there is a controlled distribution to sites. It is usually a controlled distribution based upon historical ordering records. It is the drug wholesaler who decides what percentage of their allotment goes to each of the pharmacies who order. So, large oncology pharmacies will receive a larger total amount but the same percentage of their order history compared to smaller pharmacies.
I hope this clarifies things a bit. I wish you all the very best.
Jane
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Thanks, Jane! always appreciate your pharmacy knowledge!
Is an active metabolite theoretically more readily bio available? I'm having a similar internal debate about regular B6 vs. P-5-P.
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No Moth. It is not a general rule that active metabolites are more bioavailable than the parent molecule. With regard to pyridoxine and PLP, the only time when PLP is the recommended form is when an infant is diagnosed with a genetic inborn error of metabolism and cannot convert any of the six forms of pyridoxine to PLP. These infants may have a variety of symptoms which are mainly neurologic including epilepsy.
Pyridoxine is not just one molecule. It has six vitamers. There are two pathways for metabolism to convert them to the active PLP and each of the vitamers has a role. In addition, some of the vitamers need to interact with other B vitamins like folate and riboflavin for their proper functioning. So, if you were to take PLP alone, some of the actual work of the other vitamers would not happen.
It was once supposed that a vegetarian or vegan diet would be deficient in PLP. However, recent studies have confirmed that pyridoxine is found in all chlorophyll producing plants but also fruits, vegetables and grains and gives the same serum PLP level that eating meat does. That makes sense because all of the B vitamins are water soluble which means they are not stored in the body and need to be replaced daily. That is easy when they are readily available in meats, seafood, eggs, fruits, vegetables, nuts and grains. Historically, humans have been able to forage and hunt over millennia and still maintain a healthy B vitamin diet.
It is rare to see a pyridoxine deficiency in this century. Oddly enough, overdosing on pyridoxine looks the same as a deficiency - neuromuscular problems and neuropathy. There are a few instances when taking a drug will inhibit the function of pyridoxine. Isoniazid competitively blocks pyridoxine so patients taking that need supplementation.
This is way off topic for your Stage IV thread so I will bow out now. You can PM me if you have questions.
Stay well,
Jane
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Thanks Jane.
for anyone just starting out, B6 supplementation is commonly recommend to prevent peripheral neuropathy from chemo, esp taxanes.
Evidence for it is weak & I know of at least one recent clinical guidance which recommended against it but at this point, I'm >1.5 years of a taxane and have taken it religiously & am not going to mess with what is possibly working.
neurohackers are keen on p-5-p also...that's where I heard about it first. Certainly wish there was more clinical evidence on many of these things... it feels very much like we're stabbing in the dark.
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moth,
I definitely watch my labs obsessively. I'm not sure if they are indicative of anything serious when they fluctuate, but they definitey make me feel better knowing when my tumor markers are going down. I'm still a little stressed out from my previous MO, who I broke up with after he took me off Abraxane and my tumor markers shot up. I only got two infusions into Abraxane with my new MO before the shortage. Hence, the frustration!
Thank you for clarifying, Jane. I'm at a group that is part of a large university, but it's a smaller practice with a pharmacy onsite. That might be why we're being overlooked in the allocation process.
So, I spoke with my MO yesterday. (labs are later today) He felt that the Taxotere dosage from the first infusion was probably too high for this body, given my side effects. I had brutal fatigue, nausea, migraine, muscle pain, and joint pain that lasted 6 days. Previously at my follow-up with the CRNP I was prescribed Tramadol, because a cancer patient just can't have too much constipation! Sarcasm aside, it helped a lot with the headaches.
My MO recommended that we lower the Taxotere dose and stop the Decadron before and after infusion and change from one infusion every three weeks to once a week for three weeks on (lower dose) and one week off. He said he would prescribe the Decadron for the day of infusion only. I agreed to give it a try. I'm at least less anxious about my infusion this Thursday. When I woke up on Monday, I could see that Taxotere bus speeding towards me! Now it looks more like a scooter. I'm hoping frequent smaller doses does the trick.
Whatever it takes to keep things stable until Abraxane becomes available again. Once, when I was spiralling down the old internet rabbit hole, I read somewhere that a generic could be available in early 2022. I hope that's true.
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Out of interest, why does it seem that a lot you are switching from Abraxane to Taxotere, rather than Taxol? Is there a reason?
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