TRIPLE POSITIVE GROUP
Comments
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Lee, Thanks for the information. I am 74 yrs old and I am not overweight.. I am 5.3 & 1/2 and weight from 119 to 121 so I wonder where my estrogen is coming from? Wow lots of questions for my next MO visit.
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LeeA, I took virtually no nausea meds. I think you can stop by now. Are you inclined to nausea generally? I’m not and that held true through chemo.
Wow, interesting tidbit. I was always a little dubious about that whole thing b/c I wasn’t overweight before and yet here I am. I know, me and what army, right?
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LeeA...I only used anti nausea symptomatically. So, on occassions, I would have queasiness, so I would take a couple thought a day.
Rozem...remember, you are not just overusing muscles, but you had muscle removed from your back, so you are missing a whole area. I think it is a substantial muscle too. So you have to retrain the. Muscles there to compensate for the missing one. Move gently forward. Whoever said overuse can cause as many problems as underuse is right.0 -
Your adrenal system, as well as fat, makes estrogen after menopause.
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LeeA, I rotated compazine every 6 hours and zofran every 8 hours for about 3 days after each AC tx chemo. After my 3rd AC I got so sick, throwing up & nausea, even with the compazine & zofran. So at that point I switched to Emend for the 4th AC and the first of several weekly Taxol treatmens. The Emend worked much better, even though I was pretty beat up by the 4th AC. Once I was pretty sure Taxol wasn't making me as sick to my stomach as the AC did, I went back to zofran/compazine for a few days after each tx.
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Cypher I think that's alot of it. If before BC u were normally not one to get nausia, or headaches or riff-raff pain--rhen chemo doesn't seem as hard on u'r body--but whar we tend to have I think chemo makes in magnified cuz it kind of ife our weak spots. Just my theory--Cuz anything thst bothered me before was exagerrated so during and after chemo. I remember my cousin yrs ago hurt her back really bad and exactly7 days after chemo her back would spasm and she's be in bed for 5 days then be ok--she got hers every 3 weeks but u could time it. LOL my niece the same type of thing--me and my Diarrea and my sister Diareahha (sp) so my studies LOL show it attacks weak points in our bodies my aunt used to get headaches--she had them all the time then. My one aunt refused chemo and she died at 88 with no SE and didn't die from cancer. so looking at this whole picture is bafflinf to me so studies change all the time, it seems to me so what is good this year might be the enemy next study.If u like and trust u'r team they'll have all the answers for u and so will their nurses. And the more u worry the more stress u have to add to this beast and it loves stress. We all know that. I know I'm weird about these things, but for whatever reason I don't worry about any of this I just do what they tell me. I have 3 big tests next week and they are taking all kinds of biopsies--what bothers me the most it intrudes on my laziness--I have to take showers and get dressed--That's how weird I am.
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Lee,
I only took nausea meds when I felt queasy, which wasn't that often because I got emend in my infusions. When I did get queasy, it was within 3-6 days after the infusion.
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I had aloxi in my infusion also. Not sure how long it lasts. I only had taxol, too, and the onc said much less issue with nausea. I did get kind of queasy off and on, but as I mentioned earlier, I would take the sublingual zofran an it worked great.
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Thanks so much for your input cypher, fluff, cgesq, camillegal and shore1
I haven't taken one since 6:00 am and it's about 9:15 pm.
I started out with the dissolvable Zofran but I came to dread the taste so much that the MO's office called in the swallowable version and at least for me, that worked much better - although I'm glad to have the dissolvable in case I ever need it to work really fast.
Hopefully, most of the chemo is washed out by now (?) and I won't need the anti-nausea meds again until TX2.
My WBC is 1.9 but the MO said he wasn't worried about it and didn't give me any specific instructions so I'm just carrying on as usual - i.e. going places, etc.
I hope everyone has a great weekend!
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Good evening ladies. I haven't been on for quite awhile. I finished up with everything the 1st week in July. With just my Herceptin treatments to finish up through November 2012. Unfortunately my insurance ran out and my last Herceptin was in August 2012. I have 5 more to do and my oncologist at the time was adament I finish the full year. I am in the process of getting on a Breast Cancer program her in Cali to finish treatments and get the tests I need.
Here is what is going on with me. At the end of September I started to have "chemo brain" again. It was light at first then progressively got worse over a 3wk period. The last few days being so bad I had facial numbness, blurred vision, slurred speech, and unsteady walking. I went to the ER and they found several calcium deposits in my brain and diagnosed me as having had a TIA (ministroke). I had to take blood thinners and the chemo brain got better for the most part. I still had episodes of it on and off through November and into the first week of December. In December I went into the hospital for a week for severe depression and just feeling crazy. Like my brain wasn't functioning correctly. Fatigue, confusion, and again blurred vision. Scans showed same calcium deposits but nothing else. My blood counts were mixed. Very high WBC with my Neutrophils almost double the high end of the normal range and my RBCs low. No infection was found. My thyroid functions were also low. I informed them of my BC diagnosis but they didn't run any tests for possible metatsis and they are not connected with the group I went to for BC treatment.
As soon as I have insurance again I will be seeing a neurologist. But the brain isn't my biggest concern. I have had fibromyalgia since 2000. Diagnosed in 2004. I had it pretty much under control for 5 yrs before BC diagnosis, without medication. It flared a little during chemo but nothing to bad. So, when I had some thigh pain at night just before falling asleep 5 wks ago, I wasn't really concerned. I just thought it was fibro. It was happening about 3 nights a week for the first 2 wks. Then 5 nights during week 3. Now it has been EVERY night the past 2 wks. And it is different than fibro pain. Fibro pain is achy but like a burning muscle pain. Like you are doing a leg lift and the muscle starts to burn as you hold it in the air. The pain I am having now is deep, in the bone, a dull ache that makes me feel nauseous. And it won't go away with OTC meds. I only get a few hours of sleep a night now. It happens only when I am resting. When I am active it isn't bad. It pretty much goes away or at least I don't notice it. The past 2 days my hip and knee on the left side have been killing me! The left side is the side most affected.
All scans in the beginning (November 2011) were negative for bone mets but I did have an area on lower spine and left hip area that light up a little on bone scan. Drs said we would monitor. My BC also has 2/4 positive lymph nodes after chemotherapy with cells found in the lymphatic vessels. I am getting a little nervous. I know how fast my lymph nodes grew once they were palpatable. (from pea size to cherry grape size in about 3 wks).
So of course I came on here for the wonderful support and to vent to people who understand. I know I will always worry about every ache and pain but I/We have good reason to. Hopefully I can get on the BC program this next week and get in for a scan.Have a blessed evening ya all! And thank you for listening. Healing Hugs!!
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Denielle, ugh. I just hope you can get in for treatment/assessment with someone who knows what they are doing asap. I have good insurance, thankfully, but in a bc support group I was attending there were two separate women who did not have insurance. One was in her 40s, and was a home health care worker so just had no money for it. She got on some kind of program, MediCal or something, and it ended up that she got great coverage, could go wherever she wanted. Haven't the foggiest how any of that works but it sounds like there is support out there if you need it. Sending good thoughts your way -- keep us posted!
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LeeA, I was told to just be really careful about being exposed to germs etc. at this point in your cycle. So no raw vegetables (I ate them but only organic ones I cleaned and prepared myself). Bring your little hand sanitizers everywhere you go. Make sure you're not around anyone who has a cold or anything. Get lots of sleep, eat lots of protein. I'm glad you're doing well!
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Ladies, I thought this article was interesting but I'm having trouble understanding it. It popped up when I googled herceptin and phosphate, because I am concerned about higher phosphates in my blood tests.
Combination Overcomes Breast Cancer Resistance to Herceptin
UT MD Anderson scientists find adding SRC inhibitor breaks hub of opposition
MD Anderson News Release 03/13/11
Breast cancer tumors take numerous paths to resist the targeted drug Herceptin, but a single roadblock at a crucial crossroads may restore a tumor's vulnerability to treatment, scientists at The University of Texas MD Anderson Cancer Center report on line at Nature Medicine.
Adding the drug saracatinib to Herceptin treatment shrinks previously resistant tumors by cutting off at least five different molecular pathways, each of which can resist, said senior author Dihua Yu, M.D., Ph.D., professor in MD Anderson's Department of Molecular and Cellular Oncology.
"Scientists have identified so many ways by which a tumor resists Herceptin that it raises an important issue for treatment," Yu said. "Will we have to give patients six drugs or 10 drugs to block them all? The side effects would be awful. Two pills are better. This combination is a promising therapy for those with Herceptin-resistant breast cancer."
Working in cell lines, mouse models of breast cancer and checking their work in human tumor samples, Yu and colleagues identified SRC, a known cancer-promoting protein, as the crucial common downstream component of multiple resistance pathways.
Saracatinib is an SRC inhibitor, thwarting that protein and allowing Herceptin to work again in tumors that have a high amount of the HER2 protein.
Only about 26 percent of women with HER2-positive breast cancer respond to Herceptin as single therapy. Between 40 and 60 percent respond to the drug when combined with other chemotherapy.
Combination is ready for clinical trials
Yu said saracatinib has been tested in phase I and phase II clinical trials as a single treatment against late-stage cancers. It has a favorable side effects profile.
"It didn't work as a single agent, but very few drugs work by themselves against late stage disease," Yu said. "Our experiments confirmed its lack of efficacy as a sole treatment. But combined with Herceptin, it's beautiful."Another SRC inhibitor, dasatinib, has been approved by the U.S. Food and Drug Administration as an anti-cancer drug, but it has harsher side effects, said Siyuan Zhang, Ph.D., a postdoctoral fellow in Yu's lab and the paper's first author.
A tumor-suppressor's job
In 2004, Yu's lab discovered that loss of the tumor-suppressing gene known as PTEN led to Herceptin-resistant tumors. PTEN is a phosphotase - a protein whose function is to strip phosphate chemical groups off of other molecules.
PTEN has two components, one to remove phosphate groups from lipids, and another to remove them from proteins. PTEN's target protein however, was unknown.
Zhang discovered that SRC is a PTEN target. With its phosphate groups, SRC is active. PTEN stifles SRC by peeling away the phosphates.
If PTEN loss leads to Herceptin resistance, and PTEN targets SRC, would that make SRC the culprit?
On the trail of SRC
In a series of experiments the researchers found:
- SRC is active in breast cancer cells once vulnerable but now resistant to Herceptin and in cells that are resistant from the start.
- Activation of SRC drives resistance to Herceptin. Tumors with low SRC levels treated by Herceptin shrunk to 20 percent of their original volume in 21 days while SRC-heavy tumors increased by nearly 400 percent over the same time in mouse experiments.
- SRC activity correlates with patient response to Herceptin. Assessing SRC activation in samples of 57 human breast cancer tumors, the team found that more than 90 percent of tumors with low SRC responded compared with 40 percent of tumors with active SRC.
- Patients with little active SRC had a median survival of 57.9 months compared with 34.2 months in those with high SRC activity.
- SRC is activated by a number of receptor tyrosine kinases that cause resistance, including IGF-1R, EGFR, ERBB2, HER3, and Met, separate pathways that work through SRC. "Block SRC, and you reverse them all," Zhang said.
Crushing resistance
Combining Herceptin and saracatinib to treat resistant tumors in mice reduced tumor volume by 90 percent in 25 days. Herceptin alone kept tumor volume about the same during the same period, while control and saracatinib alone permitted growth of more than 200 percent.
The difference was more striking in tumors deficient in SRC's enemy, the PTEN tumor-suppressor. The combination reduced tumor volume by more than 90 percent while the two drugs alone allowed growth of between 200 and 400 percent.
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cypher wrote: what do you mean you're on the thinner side so don't have as much estrogen to block?
I was 1/2 kidding but as you know they do say that increased weight is not good for us because once you've been through menopause estrogen is somehow produced from that fat. I just assumed that if that is true then the thinner you are the less estrogen there will be in your body… Oh wait I see Lee just answered that.
So Eileenohio you are thin but you still have some fat on your body. I do believe also that your ovaries are still producing a very small amount of estrogen as well… but given your age probably not all that much compared to me.
LeeA I had lots of digestive issues and was on 2 drugs while on chemo. I took no nausea meds (don't hate me) because I had no nausea. BTW I do get nauseous on lots of drugs including anesthesia and narcotics (didn't take any of those either) but for some reason not on chemo.
wow Denielle you've been through a lot. Sounds like there is something going on but don't assume mets, especially in the brain. That's the last place it would go. Doesn't sound like they are too worried about your spine but it's good that they want to do a follow up to be sure. The mini-stroke sounds like what's causing what you call chemo brain. Sucks about the fribro pain. I had shingles so I can relate. Do the have any meds that work for you? You're way too young to have to deal with t his shit. BTW check out the company that makes Herceptin. They might be able to help with payment
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Lee, I agree with Cypher on the germ thing. When my WBC was 2, the NP told me to be very careful. No salad bars, no fresh produce that can't be peeled, avoided crowded places, lots of hand washing, carry hand sanitizer, etc. Please be careful. I don't want you to get sick!
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Just letting everyone know it's going to rain or snow tomorrow in the midwest. My weather heel is going numb (nueropathy) just like it did on Thursday evening. I actually thought it was all gone but I guess we haven't had too much dame weather.
BTW my NP told me that I could do gym or eat what ever I wanted including sushi if I was doing Nuelasta. I still gave up the gym though after TX3. Too creepy full of germs.
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LeeA - I had emend and two other nausea drugs during treatment, then was sent home with a couple more. I never got real sick, but would get some nausea about days 4-6 also, like cgesq, I'd take one of the compazine and them be fine, usually that's all I'd need to do.
Denielle - I hope you get into the BC group soon too - I have a friend that found a lump, no insurance, she went to a women's free clinic locally, they got the ball rolling, then she was able to get on the Oregon Health Plan for treatment, they are still covering her follow up two years later. Maybe they have something like that in California?
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Oh yeah I forgot I took emend. That was required. Had lots of SE from that. It effected my eyesight
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--- Amazing frozen
All it is.....is a frozen lemonMany professionals in restaurants and eateries are using or consuming the entire lemon and nothing is wasted.How can you use the whole lemon without waste?Simple.. place the lemon in the freezer section of your refrigerator. Once the lemon is frozen, get your grater, and shred the whole lemon (no need to peel it)and sprinkle it on top of your foods.Sprinkle it to your whisky, wine, vegetable salad, ice cream, soup, noodles,spaghetti sauce, rice, sushi, fish dishes.All of the foods will unexpectedly have a wonderful taste,something that you may have never tasted before. Most likely, you only think of lemon juice and vitamin C. Not anymore.Now that you 've learned this lemon secret, you can use lemon even in instant cup noodles.What 's the major advantage of using the whole lemon other than preventing waste and adding new taste to your dishes?Well, you see lemon peels contain as much as 5 to 10 times more vitamins than the lemon juice itself. And yes, that 's what you 've been wasting.But from now on, by following this simple procedure of freezing the whole lemon, then grating it on top of your dishes, you can consume all of those nutrients and get even healthier.It 's also good that lemon peels are health rejuvenators in eradicating toxic elements in the body.So place your lemon in your freezer, and then grate it on your meal every day. It is a key to make your foods tastier and you get to live healthier and longer! That 's the lemon secret! Better late than NEVER! The surprising benefits of lemon!Lemon (Citrus) is a miraculous product to kill cancer cells. It is 10,000 times stronger than chemotherapy.Why do we not know about that? Because there are laboratories interested in making a synthetic version that will bring them huge profits.You can now help a friend in need by letting him/her know that lemon juice is beneficial in preventing the disease. Its taste is pleasant and it does not produce the horrific effects of chemotherapy.How many people will die while this closely guarded secret is kept, so as not to jeopardize the beneficial multimillionaires large corporations?As you know, the lemon tree is known for its varieties of lemons and limes.You can eat the fruit in different ways: you can eat the pulp, juice press, prepare drinks, sorbets, pastries, etc... It is credited with many virtues, but the most interesting is the effect it produces on cysts and tumors.This plant is a proven remedy against cancers of all types. Some say it is very useful in all variants of cancer. It is considered also as an anti microbial spectrum against bacterial infections and fungi, effective against internal parasites and worms, it regulates blood pressure which is too high and an antidepressant, combats stress and nervous disorders.The source of this information is fascinating: it comes from one of the largest drug manufacturers in the world, says that after more than 20 laboratory tests since 1970, the extracts revealed that It destroys the malignant cells in 12 cancers, including colon, breast, prostate, lung and pancreas...The compounds of this tree showed 10,000 times better than the product Adriamycin, a drug normally used chemotherapeutic in the world, slowing the growth of cancer cells.And what is even more astonishing: this type of therapy with lemon extract only destroys malignant cancer cells and it does not affect healthy cells.0 -
Wow - Love the lemon story! I think that I may try that soon.
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The only uncooked food I've eaten was tabouleh last night. I didn't eat very much (I didn't prepare it).
I haven't taken the Zofran for 24 hours now. No problems yet but I'm sure it was needed while I was taking it the first few days because I definitely felt kind of queasy this past weekend.
I've been taking Pepcid Complete as well but other than D3 I've basically given up all other supplements at this point. I'm even iffy about the multi-vitamin because I'm not sure if there are any antioxidants in it. I think I'll go to Vitamin Shoppe today and look for the whole foods (?) multivitamin.
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Plus mulit's make me feel queasy on a good day. My rule is if I felt nauseous to take the drug, because I wasn't going to let that one get away from me. I also took Prilosec (got the prescription because it was cheaper for me with insurance) and took that everyday until 3 weeks PFC, that was a God send. I had the most terrible heartburn the first time I thought I was getting a perf-ed esophagus - so called MO and they had me start taking it immediately, after that only mild heartburn the rest of the time. You're doing great Lee!!!!
I have a friend that sold Juice Plus supplements, they're made of only fruits for the morning and veggies for the evening, and that's what I took. Since there were only a few things that tasted good to me, I figured I should try to get some extra fruits and veggies in my diet.
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Danielle u have to check out if there are free clinics there, they've been opening them thruout the state cuz of low employment so call public Aide u'r self and get all the facts u can and write them down. And most of these clinics are associated with hopsitals so u'r Dr. will take it. I know it's alot on u now but if u can sit at the phone and call people or the computer and find out what u need to do or to go to please do it ASAP. Why should u be in pain just cuz u have no insurance that just makes me so mad for u. I see u'r in CA that has to have help for u and if u'r Drs. are doing it fine, but do some on u'r own. I don't know how to really use a computer that well or I would help u dig for help right away--there has to be a way.
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Danielle, I just did a quickie search and found this site. I have no idea how current it is but perhaps it can be a launching pad:
http://www.bustedfoundation.org/resources.html
(three California agencies are listed - two in Southern California, one in Northern California)
Also, here are two more links found in the same search:
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Linda, thanks for that info! Another screenshot about to happen!
ETA: Angie, thanks for posting that great lemon info!
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Lee I'm so glad u'r good with all this stuff I hope something good comes ot of it for Danielle.
Oh I forgot Angie that lemon thing is really clever and like it.
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camillegal - I'm glad you posted what you did. Sometimes it takes two whacks to get my attention.
I have to put my long underwear in the dryer. It's so darn cold here it's ridiculous. It might get down in the twenties tonight (ha - so much for sunny, warm SoCal!!).
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Cypher - Thank you for the article about the new drugs they're using for herceptin resistant cancer cells. It is very difficult to understand, but I liked their analogy of a roadblock. Herceptin puts up one roadblock to the cancer cell, but then SRC makes new roads. The new drugs block all of SRC's roads, so herceptin can do it's job effectively. Cancer cells don't go down without a fight, they just try to find new ways to survive.
As for your elevated phosphate levels, it's not necessarily a bad thing. It may be your body has it's ups and downs, but has just not ever been caught before. You may have already seen this, but the following thread shows that others have had his too:
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LeeA,
I took Zofran and Compazine (the latter as a "break through" if the Zofran didn't handle nausea well.)
I took it the day after, and for about 3-4 days on schedule whether I needed it or not. Then stopped until next cycle.
I also took magnesium oxide to um, keep things moving (anti-nausea meds are notorious for constipation, let alone chemo). The mag pills. They are super cheap and the magnesium is good for your heart
Worked like a charm.Denille, as I read your story I thought wow, I bet she's going to say it is her thyroid.
What did you mean your thyroid is low? Often when the thyroid is off, fibromyalgia, brain fog, depression, dry skin, etc are all symptoms...as well as wonky blood tests. But your TSH level wouldn't be "low" it'd be high (hypothyroid)...higher than 3 (1-3 is considered normal by the american thyroid assoc, the american association of clinical endocrinologists,etc.)
If undiagnosed long enough, it can cause stroke because being hypothyroid throws off the lipids big time for most people.
None of your symptoms sound like HYPER-thyroid, which is what would make your TSH low.
Anyway, you may want to delve into the thyroid issue a little bit. I know personally it influences everything for me. If my TSH gets above 2 my cholesterol/triglycerides go off the charts.'
Anyway, it just rang some bells when I read your post.
Do you qualify for Medi-Cal? Or if not medi-cal the BCCTP? http://www.dhcs.ca.gov/services/medi-cal/pages/BCCTP.aspx
Hope you find coverage and answers soon.
t
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Grandma, bless you for posting that thread. I swear I searched for that a bunch of times but I must have just put it in the search engine differently. It looks like the woman who was having htat symptom is fine. She has checked recently and if you look at her profile it says no recurrence or mets. I pm’d her just for the heck of it. Really reassuring, thank you.
Re that article, I had a lot of trouble making sense of it. I couldn’t tell whether having having high phosphate in my blood tests would be related to that, or even if this particular problem would indicate low or high phosphate levels. Perhaps finer minds than mine….
Angie, great little article -- I aactually use lemons in a lot of stuff (lemon juice). So the idea is you freeze them and then just, i don't know, stick them whole in a food processer or something and toss the shredded whole lemon on your food? (Which you also drench in turmeric, of course!)
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