TRIPLE POSITIVE GROUP
Comments
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Big congratulations, Bren! You must be so relieved to have this portion of it finally behind you!
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ashla, I'm always bookmarking your excellent links/article finds! Thanks!
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Speedy4, I, too, am on the six treatments of Taxotere, Carboplatin and Herceptin. I am currently just past number four (by a week). I have seen one, or perhaps two, threads here at BCO.org regarding Herceptin being used alone; however, I think it's a very rare practice. If you search the BCO archives you'll probably be able to find the thread(s).
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YAY Bren--
Happy Dance....0 -
Speedy...Because my nodes were clear I quizzed my MO about why I couldn't take Herceptin all by itself...response was "not enough data to support it being effective alone". Since I'm hoping to NEVER do this again I'm going with the TCH...start next Wed. Have been reading all the chemo tips and have a long list of things/ideas to get me through. THANKS everyone!
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Gratitude,
I have always been a sound sleeper. So was also disappointed when my sleep was less than stellar after tx.
I don't want to take any medication for it. I'm not a big medicine taker. I like to ride things out.
But after awhile, the waking up became pretty annoying....so now I take Magnesium Citrate every night (only 200 mg). It is good for the heart. But an added bonus is it helps the sleeping process....(and is also good for preventing headaches if taken daily).
The only other thing I do is make sure I wear myself out during the day. Workout, then try not to sit at all until after 5:30pm. I always sleep better that way. Some days bedtime can't come fast enough! lol
Hope that helps!
(STILL painting in Ohio!)
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Thank you for all the responses! I will ask about maybe having 4 treatments instead of 6.
I'm 42 and the largest tumor was .7mm. My BS said if tumor is under .5mm and HER2+ chemo would have been more of a choice than an absolute. I'm still trying to prepare myself for chemo but am very grateful to have been reading all of the information you ladies provide. Such a smart group!!
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Tonlee I too don't sleep as well as before treatment. I do find that the sleep mask has helped me a lot. This way if I do wake up I can fall right back to sleep. The biggest problem I have now is waking up. Without the light to wake me up I just keep sleeping.
Gratitude you might want to try a sleep mask. I like Tonlee prefer not to take meds. I use these: linky They allow your eyes to open and shut and hand wash nicely. I purchased mine 1/2 off at Marshals. They might sell them at Bed, Bath and Beyond too but you can purchase them online as well.
or paste this: bucky.com/catalog/Travel_Accessories/40_Blinks_.html
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Hi everyone! Home from having bilateral mastectomy w/ immediate reconstruction! Great news though,Clear lymp nodes! In pain but looking forward to being part of the way to the end! This cancer thing SUX! Love to all! Angie0 -
So happy for Camille and Bren!
Re the article on rads damage to the heart..I encourage you to read the comments section after it. Always very enlightening. IMHOthe biggest news is the revelation about cardio oncologists. We HER 2 ladies certainly can attest to the need for cardiologists with oncology expertise to help us deal with the life altering, long lasting cardio effects of chemo, herceptin and now radiation therapies.
Cgesq
I had the sametype of reaction to my one and ONLY 30 minutes herceptin infusion. It was 2 months prior to the finish line and knocked me for a loop. It was the only infusion out of the 17 that I had trouble with.I don't know how I made it home that day. My feeling on the subject is ..what is the hurry?
The reason I live in Orange county..near West Point... is because my only child...a son ...and his familylive in Bergen County...Ridgewood. Wanted to move closer to them but
didn't want to pay those property taxes!
Gratitude ..
Sleep issues have been troublesome for me as well. Sleeping has always been my forte. I fell asleep in the park on the way home from kindergarten! Bear in mind I had already gone through menopause and had had some issues for years. I was always able to fall asleep easily but post meno I would wake up a few times during the night and get up at the crack of dawn. The issue has become more problematic because I don't feel rested
anymore and have trouble falling asleep. I noticed the trouble post rads and for the first3
mos on anastrozole. It seemed better for a few months and has recently gotten worse.
Gonna talk to my mo.
There are ome OTC sleep aids I've researched but haven't taken yet.0 -
lago - I can't get your link to work. I am an iffy sleeper some of the time and like to watch TV if I have tried to fall asleep and just can't, but my DH needs to sleep because he has to get up and go to work. The light from the TV disturbs him sometimes so the mask would be for him, lol!
tonlee - As much as I hate to add another pill to take I am going to try the Magnesium Citrate. I am attempting to eliminate Lipitor - I have been dropped from 40mg to 10mg for the last couple of months, and am awaiting the lipid panel to see if my cholesterol stays good. If it does, I can stop Lipitor completely, so heart benefits from the mag citrate would be good. That would leave Arimidex as my only prescription - the rest of what I take is supplements. I have always been a frequent headache person so that would be a bonus if it helped with that. I am usually just walking around with a low-grade headache, and I don't take anything unless is starts interfering with activities. I also don't stop moving until evening - and sometimes not even then! Part of that is the joint pain and stiffness from Arimidex - I have a lot less if I am moving.
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special copy and paste this:
bucky.com/catalog/Travel_Accessories/40_Blinks_.html For some reason the linky works for me.Or do a search for "Bucky, Blinks sleep masks"
barberchic It seems like a long journey but eventually you do get your life back. Cancer is suck a time suck! Hang in there. The road can be a little bumpy but not too bad for most.
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SK,
I am hypothyroid and have hereditary high cholesterol. I didn't like Lipitor, so my ENDO put me on prescription Niacin (which also helps the sleeping process!)..I take it at night with my Mag. Citrate. It's just Vit B, but it keeps my #s super super low. And it is really good at reducing triglycerides (for those of us ~ahem~ with a sweet tooth).
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tonlee - when I go back in to have the lipid panel checked I will ask about the Niacin - does your on-base primary prescribe it? That is who is handling the Lipitor question - he is a youngster and says he would never have put me on it initially, he felt that is was a knee-jerk reaction by an older doc. I am hopeful that with more exercise and a better diet than when it was first prescribed I can successfully come off, but I def want to control the triglycerides and keep my ratio decent. No sense in doing all this crap for the BC and then keeling over with a high-cholesterol induced heart attack, right? I just had a TSH done due to some hair thinning (I blame the Arimidex) and body temp control issues (aka hot flashes) so they wanted to know the thyroid status. I know that TSH is not the most reliable but it did come back normal, on the low end. Anything that helps with that is a bonus.
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Go TonLee and SpecialK, go! You are working at fine-tuning things and sound like you have gotten to where you are willing to put in the effort to make it work.
I use 1 to 3 mg of melatonin to help with sleep, and it works well for me. I also use a low dose of metformin, and am not diabetic and have no other chronic illnesses besides bc.
It is very irritating that metabolic and endocrine issues are so clearly part of the breast cancer picture, yet breast cancer patients are not evaluated carefully and fully by any endocrine specialist at time of diagnosis who is fully educated about the many aspects of the treatments that are planned for us, so that we are monitored and advised metabolically in a really thorough way all through treatment and afterward. Instead our evaluation is done almost exclusively by surgeons, oncologists, and radiologists, who have none of the metabolic understanding to keep in perspective as we go along, and who then pretty much bow out, leaving us metabolically changed toward the very different level of menopause, to fend for ourselves.
Barring a miraculous breakthrough that ties all of that together, I don't see much likelihood of achieving better results for us.
Sharing our successes and failures in the meantime does make a difference in our lives.
A.A.
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Hi ladies,
Thanks to all of you for your comments/suggestions re: how I may be able to improve the quality of my sleep. FWIW, I slept well last night, but that is after operating on 4 hours of "sleep" the prior day, and going non-stop yesterday. I felt so happy when I woke up today. As we all know, esp., any of us who are moms, lack of sleep does CRAZY things to one's mind/mood/body.
Barberchic, what wonderful news that your lymph nodes are clear!! Hope the pain from the bilateral mastectomy is being managed well with painkillers. Don't suffer needlessly.
TonLee, thanks for the tip re: taking 200 mg of magnesium citrate. I do tire myself out with exercise, running our home and sitting rarely, but I guess I just have to wait for my body to adjust to the introduction of 20mg of Tamoxifen to my "chemistry lab." Hope the house renovation is going smoothly.
Ashla, I understand completely your comment that you do not feel well rested. I guess that is what makes me saddest, that I wake up not looking forward to the day, some days, when the insomnia has been quite bad. I am 50, chemo sent me into menopause, so I had two months of lovely hot flashes/sweats at night in the autumn 2012. Interesting that you noted you had sleep issues post-radiation treatment + beginning to take anastrozole. I finished a month of rads at the end of Jan., 2013, so maybe there is a link there, too.
ArleneA, thanks for your kind wishes
. I assume, with the passage of time, this issue may get better. lago, I shall buy a sleeping mask. The issue for me is that my heart is palpitating and I am WIDE AWAKE, even though I should be tired. Like several of you, I have not taken any medication for this annoyance, and don't plan to do so. I see my MO in April for my first 3-month, follow-up appt., so I will discuss it with him.
AlaskaAngel, I have read about taking melatonin to improve quality of sleep. Shall ask my MO about that, too. You are so correct to state that BC patients ought to see an endocrinologist as our chemical interiors have been severely altered by treatments/surgeries/other medications or health issues some of us had prior to the BC diagnosis. I am aware that if my thyroid is operating sub-par, that can contribute to insomnia, weight gain (or loss, depending on if one is hyper or hypo), weak nails, dry skin and hair, feeling cold, etc.
Have a wonderful day everyone
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TonLee: I was on the niacin too and it did the trick but when I went through chemo it all normaled out....not starting to edge up again so may have to return to the Niacin. I got the non-flush and it worked wonderfully. Must be heredity because I eat well, exercise and not overweight.
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AA - fine-tuning is a great way to phrase it! Finding the right combination of supplements, exercise, and meds to maximize my potential to be well is paramount! My BS also recommended Melatonin for my sleep challenged self. I used my DH as a guinea pig to see if he would have any of the vivid dreams that some people experience, he did not and loves the Melatonin. I believe that there are some studies that indicate that a lack of naturally occurring Melatonin is noted in BC patients, link below. I agree with your viewpoint that many of us are left with altered metabolic processes after breast cancer and then left out to dry, so to speak, since we are done with active treatment. Yet another reason to advocate for oneself!
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SpecialK,
Yes, I get it prescribed on base and filled on base. It is called Niaspan. I take 1000 mg a night. I didn't get the anti-flushing kind, so when I eat sugar int he 3 hours before bed....I turn beet red! But I'm sleeping so I don't care! lol (I notice it when I get up to use the bathroom.) But you can ask for the non-flushing kind.
My teenager has high cholesterol! lol It runs in my family big time. I kept mine under control until my thyroid quit. Then there was no helping it.
Oh well.
Glad your TSH was low. It should be between 1-3, but the military will often say 1-5...and 4-5 is too high since we have a natural up to 5 point flux during the day. My endo keeps my TSH below 1.
AA,
You are so right. I was already seeing an ENDO when diagnosed with BC. Do you know he was the only one that checked my Vit D level? (Which was like 7.) He did special blood work for me everytime I saw him during tx. (He's a civilian.)
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I just saw this come up on Twitter (re: Perjeta):
Breast cancer drug 'biggest boost since Herceptin'
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Hi all,
Congrats Barberchic.
Arlene, I finished herceptin in March 2012. I have seen my onc every three months since then. The December appointment got bumped to January. Now, I don't go back util late May. I had blood work at every one.
On sleeping, I am doing better. I try to make myself go to sleep at 11:00 . Doesn't always work. I could watch tv and jump on the bed all night and it would not wake my husband. I do take melatonin periodically, and I do have crazy vivid dreams, but I kind of like them. Sort of like an all night movie. I have some old ambien that I take 1/2 of every so often also. If I have several days that I haven't slept well, and know that I Don't have to get up early the next morning, then will take 1/2 an ambien.
Just received a couple articles in my inbox. Thought they were interesting.
http://www.cancernetwork.com/her2-positive-breast-cancer/content/article/10165/2132133
http://www.cancernetwork.com/her2-positive-breast-cancer/content/article/10165/2132128?GUID=D76C5387-16F5-44F1-AE36-ADB6C0868288&rememberme=1&ts=14032013
I don't think it is anything new, just interesting.0 -
Hey Arlene - I meant to respond to a post from u a few days ago about how often for visits. I still see my onco every 6 weeks…I finished TCH in Sept ‘11 but have been on the herceptin every 3 wks since and Aromisin nightly….oh and an Xgeva shot for my bone mets every 6 weeks. So prolly why I still see her. But my scans are every 6 mos…but MUGA every 3 mos for obvious reasons. I think I wud b asking too…why every 3 mos. How often are they scanning you? Oh, and I have a pic of me and my kids at Thanksgiving ‘11, with jes fuzz on my head and I had my last what I call ‘big chemo’ early Sept ‘11. So tell your friend to have patience…it will come back. J Oooppss…I see SpecK ans much better. One thing with me…my eyelashes have yet to grow back. Brows extremely sparse, and literally no underarm hair. But hair everywhere else…so I jes dunno. And yes….it is very hard to b patient. Hugz for your friend.
Speedy4 - I did Herceptin every week with Carbo and Taxo every 3rd week. Have been on herceptin alone since Sept ‘11 every 3 weeks. My onco would like me to stay on herceptin for 3 years!! Yeah…May will b 2 years…but like Arlene said…it’s common for TP gals…but like Pbrain said….everyone is different, especially with the ‘tolerence’ of this or that tx. And like Lago says, I have never heard of JUST HERCEPTIN w/out something else out front (first or with). I needed the TC of this cocktail to shrink my RB (that means Rat Bastard). And, it worked. I have been NED since Sept 11 and still so. Next scan in April…I remain optimistic. You CAN get thru this…please please vent, ask, cry, scream, etc…we will be there for you. Hugz!!
Bren - Congrats!! Ain't it a great feeling?!?!?!
Arlene -…about the cardo docs and herceptin. The guy my onco sent me to was VERY knowledgeable about Herceptin. Really put my mind at ease in the early days of this RB.
River - and anyone else for that matter….who are starting on TCH. I kept a journal throughout my tx. It sits here next to my computer. Feel free to ask anything anytime…just keep in mind….we are all diff and respond diff…but I will gladly share my experiences, what worked/helped, etc. Hugz!
Barber chic - Woohoo…new foobs right off the bat…you go girl!! Hugz!
About the sleeping…and to kinda follow what AlaskaAngel sed. I did get a 2nd opinion, but not until AFTER my TCH tx. I went to Cancer Treatment Centers of America. It was the 1st visit I had with a nutritionist and a homeopathic(sp) doc. So I received tons of valuable info from them on diet and most importantly, SUPPLEMENTS. Since there are no Endrocrinologists in my town, I insist my local PCP do the vitamin/mineral work-up on me once a year. I am due again in May. But back to the sleeping….CTCA suggested 20mg, yes 20mg of melatonin…it is also supports heart health and immune system. They also suggested CoQ10. I have been ordering both from them for over a year and take them every single night. I usually sleep pretty good. IF I have trouble….I always have the generic Unisom pills handy. I take ½ and it works without leaving me stupid groggy when I wake up. I am sooo much in agreement with AA about the lack of the metabolic/endocrine issues so sharing and doing our own research and being assertive in our treatment is a must. I will say tho, that at first…u jes wanna trust your doc…after a bit, and with the help of all these courageous women on this site…I learned to ‘take control’.
LeeA - thanks for the link. I printed it…think I heard of it before…but will def ask my onco about next visit. Not likely my ins will cover..but we will see. Thanks for sharing!
Love, prayers, positive healing energy always,
Sue
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Hey Mema: Who is the cardio you are going to? Thanks for all of your other information!
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Sue, I'm in love with that puppy in your avatar! Is it a Maltipoo? Speaking of vivid dreams, I've had two very vivid dreams about Maltipoos in the last 24 hours.
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Oh boy, lots going on here. Hello to the newbies. Cami, glad its not cancer. Sorry about just being in pain though. Boy, do I understand that. My knees are killing me with all the weather changes!
Pbrain, just so you know it took me months to come back from chemo. Course I had a few um, "scenic detours" along the way. also, had my TCH cut by 25%, like someone mentioned too. And just, FYI, I am 6months PFC and I just got another IV magnesium today. Guess I am glad I still have my port. Oh well, no wonder I was tired again.
I am supposed to go every six weeks for magnesium blood draw. I go every three weeks for blood work when something is not right, so, basically I only went six weeks ONCE! LOL! I see my MO every three months yet. I get a full panel blood draw then. I will switch to 6 months after a year.
I see my PCP every three months because of diabetes. I never had high blood pressure till after my BMX, it went through the roof. Now I am on two meds for it. Steroids were scary, my blood sugars ram over 400 those days.
I was one of those who had EF trouble and had to stop Herceptin early. That's the way it goes sometimes.
Hair came back my normal color, but curly. I now have Hobbit hair. But everyone says they like it. It did not fill in in front for a long time though.
I know I did not mention everyone i wanted too. Please forgive me. I am still a bit lifted that I needed an IV today. LOL
Much love to all.0 -
Miffed, Miffed. I say! LOL kinda like lifted though....
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The on-going foodie saga...
So, I've tried juicing. Went to smoothies because I prefer the fiber. So just to try things...I went meat free and mostly dairy free for almost two weeks.
I feel like crap. I'm bloated, eyebrows are falling out, and my strength has been reduced to almost nil. Plus I gained 2 pounds! And my brain...ugh..I thought it was from inhaling paint fumes!! lol
Well turns out eating raw spinach, raw kale, raw parsley, basically any raw food high in oxalic acid, DECREASES thyroid function for everyone...and for people like me who are taking meds for hypothyroidism, it interferes with the uptake of those meds. It ALSO steals calcium from the body! The body's defense against oxalic acid is magnesium, which is taken from the bones to tone it down.
http://www.ncbi.nlm.nih.gov/pubmed/473187
Good grief. I had a near death experience with juicing...lol. Now I can't smoothie because of the oxalic acid screwing with the thyroid, as well as the bones. (Though I've read if you combine some calcium with the smoothie (Fage or whatever) it will in theory keep the body from stealing calcium from the bones.)
Well at least I know what it is now.....I can stop doing it!
So ends the quest for power packed nutritional eating.
I'm going back to EATING my vegetables, meat and dairy, all in moderation.
I have discovered a few new things though and will incorporate them.
Overall though, it's just as it is with anything else.
Moderation.
Key.
Now back to regularly scheduled commenting
Have a great weekend!I am having hypo symptoms all over the place. Even down to skin so dry on fingers and feet it cracks and bleeds. I thought it was a bad batch of thyroid hormone.
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Moonflwr, I'm glad you are moving ahead, slow though it may seem. I had curly afterward too and kinda liked it, but that went away within a year for me.
Tonlee, please forgive me, but the smoothie foodie saga was too much for me, just had to laugh a bit. What we will go through, just trying to do things to improve matters....! I avoid beef and pork myself, but do organic chicken and coldwater non-farmed fish, and I still do dairy but I do 1% organic milk and try to use less cheese with more of it being hard cheese.... I do use organic cottage cheese....
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Tonlee I'm not one for crazy diets. Granted if I don't eat enough veggies in one day or too much fat (from meat or cheese) I do feel like crap the next day. I need balance.
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TonLee - my favourite juice combo is watermelon, lemon and ginger. I think you'd be safe with that :-) - and it is delicious!
Jenn0 -
Go ahead and laugh AA...my husband does!!
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More on the cardiac risk associated with rads. This is key IMO...." women were much less likely than men to receive preventive cardiovascular care". One of the mds here is saying we need to have the cardio factor monitored more closely starting PRIOR to rads and much more and longer follow up care .
"We have to be extra vigilant with women, making sure we assess them. We make sure they're on correct medicines and we make sure they gain all of the benefits from surviving breast cancer," he told MedPage Today.
http://www.medpagetoday.com/HematologyOncology/BreastCancer/378670
