TRIPLE POSITIVE GROUP

PoseyGirl

Thanks, ladies. I want to definitely cut right back. my husband was just saying that tonight. Yes, I love frozen berries and might make that my new habit - thanks, Hap. I know that as with everything, a habit takes time to form. But form it does. It starts with a decision. I have made that decision with alcohol, so I can do it with sugar. And I definitely have heard about sugar withdrawal, SpecialK.

Re: Femara, I feel very stiff - particularly at night. I feel 48 going on 78. Hips the most. And knees. Good grief

SpecialK

posey - eliminating inflammatory foods can help with that Femara induced joint pain - just a little added incentive, lol!

ElaineTherese

PoseyGirl,

Joint pain is a very common side effect of the AIs. From hanging around the Aromasin board, I gather that for some women, the side effects decrease over time. For others, they never do, and the women in question have to decide whether or not to stay on their AI, or shop around for a gentler hormonal therapy. You can try out different generics as Special K did. You can try Aromasin or Letrazole instead of Femara. Or, you can always try Tamoxifen.

For me, the longer I sit, the creakier I feel when I get up. I've been taking walks with my sons, and am taking my youngest to the pool for an hour a day (weather permitting). At work, where I sit at a desk, I make sure to get up a few times an hour to do something in another area of my department. Hope your side effects decrease!

moodyblues

Specialk.  Having a lot less SES with food today.  I had scrambled eggs and grits last night and it went well.  I do have toast each day with p-nut butter, which always tastes so good.  I am grateful for you sharing your tips with us, it has been working!  I can tell that I've lost a few pounds but with that said, I had a few to lose, BUT I don't want an unhealthy diet so, I try healthier foods (even though bland).   Tums helped me too and I will call MO today to see if they can call in Pepcid just in case I go through this again.

Thanks everyone!

toughcookie_21

Thanks everyone for welcoming me. HapB- I totally know how you feel about being on the fence about it, I am too. My reasons are very selfish for not wanting chemo. I am one of those 10% of people who would forego chemo to save her hair. I am hopeful that I can use cold caps, but I understand they don't have the best results with certain types of chemo. I've been looking at wigs online and it just makes me feel sick inside to know what's going on under the wig. I am confident that I can deal with the other side effects and I plan to work through the treatment. I guess my mind is already made up.

Reading the story of the mountain lion and bear helped me this morning. I am going to climb the stupid mountain.

I ironically cut out sugar and carbs back in January because I got sick of carrying around the extra 30 pounds of "baby weight" that I gained 11 years ago when my first child was born and the slow creep on the scale that was pushing me close to 190 pounds. The tipping point was in January when I was at a conference in Tampa and I ordered chocolate cake and red wine from room service after coming back to the hotel from a 3-course dinner with coworkers and customers (hey- I don't have to pay for this, I'll just put it on my company Amex) and there I was at 11:00 at night drinking red wine and eating chocolate cake!

My husband got on board with the diet and we both lost over 10 pounds each by March, which was when I noticed the dimple in my right breast. I searched online and discovered that it could be cancer or it could be the weight loss. I had hoped it was the weight loss, but obviously it wasn't. I've continued to eat healthy and avoid sugar and simple carbs and dramatically limit alcohol. It is not easy, but I felt better almost immediately after starting the diet. My mental clarity and energy levels were much better and I was working out 4 days a week until the cancer diagnosis. I lost another 6 pounds from March to now but I haven't been working out as much. My point in sharing this is that if I could cut out wine, cookies and cake, you can too! I've been reading about the positive effects of fasting, avoiding alcohol and reducing inflammatory foods and even if it doesn't help me kick this cancer, it has at least made me feel better mentally and physically.

Anonymous

Hap....
I am scared to death... of all the what if's .. they are at every corner.. and ALL of us have ever right to be scared sh$tless .. there are no absolute in this cancer fight or in life...
But we lean into that fear... we take that energy and turn it into being well informed .. to take care of your body and your mind... to make the best choices for our own good...
and we fight...every damn day...sometimes we right the cancer,sometimes we fight our selves ... but we fight ...
the best quote that I have found so far and I repeat to myself often ...
Its ok to be scared but do it anyway ....

You are in my thoughts and prayers..
Much support from Tennesssee

deni1661

toughcookie- sorry you have to be here but this is a great place for information and support. Triple positive is a scary diagnosis but as specialk mentioned, HP therapy is providing good results. Definitely a marathon for all of us and we're here for each other throughout. Ask questions and do lots of reading to lessen the anxiety. You are in my prayers, hang in there

Deniset- what a hoot, thanks for sharing! Laughing is good for us

Regarding sugar - I agree with specialk, after the first couple of weeks with no sugar I found desserts and such are just too sweet. My mind thinks I want something sweet but when I indulge it's not really satisfying anymore. I find pizza much more rewarding at this point especially since I cut out dairy too and have pizza rarely these days.

SpecialK

toughcookie - cold caps work pretty well with taxanes, less well with Adriamycin. I think it would be worth a try if you are loathe to lose your hair.

Wigs are covered by some insurance companies if you get a prescription from your MO for a "cranial prosthesis", mine did but capped the reimbursed cost at about $375 if I remember correctly. Some insurance companies direct you to a specific provider and then are direct billed by that provider, others reimburse you when you submit the prescription, a receipt, and a claim form.

The eating plan I follow, once you are done with losing weight and have your ducks in a row as far as what foods cause inflammation for you, advocates a 3-bite of dessert suggestion - with 3 bites you satisfy any craving without doing too much damage, lol!

meg2016

I had to give up coffee and dairy during chemo due to stomach sensitivity, especially the days just after treatment.

SpecialK

I admit to being a bit of a coffee snob, but the only thing that tasted good to me during chemo was Taster's Choice instant coffee. Seriously.

Eleanora23

I haven't been on recently. Kind of went through treatment and my other "milestones" quietly at home. Most people in my life didn't want to hear about it, so I stopped trying to bring up the topic. Until this week... my first POST TREATMENT MAMMO. I've heard nothing since Friday, was not asked to stay for more imaging on that day, but don't know what it means. I feel that staff where I got, surprisingly as it is a breast center, do not understand what a FIRST post-treatment mammo can mean emotionally. PUzzling.

On a positive note for my treatment center, the tech and staff during that day (I went alone) were more than kind and patient with me. Without that reassurance, the day would have been much harder. Unfortunately, I am scared of my Onc. nurse since she lost patience with me for not understanding instructions about a medication and I hate to call. I did call and leave a message asking about the mammo results (I felt very brave to do that....!)

HERCEPTIN Just about done! I will finish my herceptin this week,last treatment, after starting almost one year ago to the day on Friday. Herceptin wasn't too bad, but .. on some days everything scares me (like the little joint aches) and other days I don't think about BC at all. Chemo seems an epoch ago (finished in the Fall) and so does Radiation. Only the pains in my lumpectomy breast remind me of the radiation/ surgery.

Wish me luck. I'm doing this alone. Ellie

Eleanora23

I haven't been on recently. Kind of went through treatment and my other "milestones" quietly at home. Most people in my life didn't want to hear about it, so I stopped trying to bring up the topic. Until this week... my first POST TREATMENT MAMMO. I've heard nothing since Friday, was not asked to stay for more imaging on that day, but don't know what it means. I feel that staff where I got, surprisingly as it is a breast center, do not understand what a FIRST post-treatment mammo can mean emotionally. PUzzling.

On a positive note for my treatment center, the tech and staff during that day (I went alone) were more than kind and patient with me. Without that reassurance, the day would have been much harder. Unfortunately, I am scared of my Onc. nurse since she lost patience with me for not understanding instructions about a medication and I hate to call. I did call and leave a message asking about the mammo results (I felt very brave to do that....!)

HERCEPTIN Just about done! I will finish my herceptin this week,last treatment, after starting almost one year ago to the day on Friday. Herceptin wasn't too bad, but .. on some days everything scares me (like the little joint aches) and other days I don't think about BC at all. Chemo seems an epoch ago (finished in the Fall) and so does Radiation. Only the pains in my lumpectomy breast remind me of the radiation/ surgery.

Wish me luck. I'm doing this alone. Ellie

ElaineTherese

Oh Ellie.

I'm sorry that your friends and others (MO's nurse?) have been so unsympathetic. Ugh! Remember that MO's nurse is supposed to work for YOU, not the other way around. It is her job to help patients figure things out, like their medications and mammo results. Perhaps, you could tell MO about her unsympathetic nurse; what's the point of treating cancer if the staff isn't helping the patients get through treatment?

Glad to hear that you're finishing up Herceptin! Another milestone, about to be passed.

Congrats, for managing alone, and lots and lots of warm lucky vibes coming your way. ((Hugs))

Eleanora23

I haven't been on recently. Kind of went through treatment and my other "milestones" quietly at home. Most people in my life didn't want to hear about it, so I stopped trying to bring up the topic. Until this week... my first POST TREATMENT MAMMO. I've heard nothing since Friday, was not asked to stay for more imaging on that day, but don't know what it means. I feel that staff where I got, surprisingly as it is a breast center, do not understand what a FIRST post-treatment mammo can mean emotionally. PUzzling.

On a positive note for my treatment center, the tech and staff during that day (I went alone) were more than kind and patient with me. Without that reassurance, the day would have been much harder. Unfortunately, I am scared of my Onc. nurse since she lost patience with me for not understanding instructions about a medication and I hate to call. I did call and leave a message asking about the mammo results (I felt very brave to do that....!)

HERCEPTIN Just about done! I will finish my herceptin this week,last treatment, after starting almost one year ago to the day on Friday. Herceptin wasn't too bad, but .. on some days everything scares me (like the little joint aches) and other days I don't think about BC at all. Chemo seems an epoch ago (finished in the Fall) and so does Radiation. Only the pains in my lumpectomy breast remind me of the radiation/ surgery.

Wish me luck. I am hoping for the best results. I need a break ! Ellie

kae_md99

hi all,

i am on lupron,when does the MO usually start AI? after surgery

ElaineTherese

Kae,

I started my AI about a month after surgery and before I started radiation.

SpecialK

eleanora - congrats on finishing Herceptin! That is a big milestone!

moodyblues

Ellie, I am so sorry that those around you aren't helping you through this.  We (I) wish we could give you a big hug and maybe some healing tears too.

GlasgowGirl99

Hi everyone. This is my first post here. I am posting on the Taxol weekly forum too. I was diagnosed triple positive in Feb and had a lumpectomy followed by 2nd surgery to clear the margin. Have had 1 Herceptin and 2 Taxol. Chemo has been postponed as I am having trouble with the wound. Small opening and fluid leaking so no more chemo til it heals. It is so scary, this journey we are all on. And I am so frustrated my treatment is now on hold, although I know it's for the best. I am so glad to have found this community.

DeniseT - I loved your post. That mountain lion ain't getting me yet (though the top of the mountain is getting farther away from me at the moment) 😕😨😨

bareclaws

Also alone. I can't tolerate Benadryl, so am taking regular Claritin right before infusion instead. Works fine so far.

SpecialK

hap - steroids won't knock you out, they will do the opposite. If you can sub a non-drowsy antihistamine like bareclaws is doing, they might leave off the Benadryl - but they like to give it because Taxanes do cause allergic reactions now and then. Something to consider - the American Cancer Society may provide a volunteer driver in some locations.

bareclaws

Yes, I get steroids with Taxol, but I've talked MO into cutting the doseage back twice, to 7mg now. That's really helped me get through it-so far. #8 coming up. And yes, steroids jack you up, not knock you out. But they make me feel terrible.

stephaniebc

hi everyone, maybe some of you can impart some wisdom, as i am fretting: i had a chest MRI yesterday to check progress after 6 months of neoadjuvant chemo + herceptin. i don't have the report yet, but today i got a call from my health insurance telling me that a request for an MRI of the spine made by a doctor whose name i am not familiar with had been approved. could it have been requested by the radiologist who did my chest MRI because something looked suspicious? could mets have appeared on my spine during my chemotherapy while my primary tumor was shrinking? (it became undetectable to the touch after my first herceptin / perjeta infusion). i did a full bone scan before i started my chemo, and it was clear. thanks, i hope this isn't off-topic. (i called my oncologist's office to inquire but they haven't called me back).

ElaineTherese

Hi!

It may very well be the radiologist. Have you googled the name of the doctor who made the request? Have you looked at the names of the doctors associated with your clinic/hospital? My regional hospital has three radiologists assigned to the Breast Care center. If I look at my scans in the hospital portal, one of the three radiologists is the doctor of record.

I would say that it probably isn't mets, but the radiologist may have seen "something" and probably wants to make sure it isn't. MRIs pick up all sorts of things that aren't mets. But, a careful doctor will explore all possibilities so as not to miss anything. I had "something" light up on three PET scans, and additional scanning couldn't see it. My oncologist considers it to be a false positive. ((Hugs))

deni1661

Eleanor23 - I'm so sorry that you're not getting the support you need and deserve. I can relate to the anxiety of waiting on the results.

You're almost done, that will be a huge milestone. I admire your strength and courage with how you're managing on your own.

Praying you hear good news very soon, keep us posted. We care and will always want to hear how you're doing!

Suburbs

Hi. I can empathize with the agony of waiting to have a test and then waiting for the results. Even worse when the results lead you to more tests and more waiting for more results. We have been there with the initial diagnosis which is bad enough. The piling on of just the possibility of another diagnosis of anything additional is crippling. It's a vicious endless cycle. Sometimes someone telling me it will be ok and not to worry makes me angry and sometimes it's just what I need to hear.

I had a ct scan a few weeks ago which showed a lesion which led to a test then an out patient surgery for a biopsy and two weeks of waiting for results. The chance of this tumour coming back benign was very unlikely. I received my results today. Benign.

Dreams come true. Miracles happen. Those two thoughts have been on repeat in my mind. I am grateful for this news. I'm passing all the positive energy I've got to the next person waiting for results living in testing limbo. Hang in there.

glascowGirl, welcome and wishing you a speedy recovery. Stephaniebc, hopefully a call to your oncologist will be answered tomorrow. Eleonora23, sending you positive thoughts for good results.

moodyblues

Finally got relief from my abdominal pain/cramping/spasms, MO called in a prescription and I started to feel better within an hour or so.

I have learned a valuable lesson from all of this, if a symptom persists that is making your day unbearable (pain, not being able to sleep or eat) call your doctor.  I am a trooper and was very sure it would get better if I just gave it time and fought it hard (mind over matter), I suffered needlessly as there were meds that fixed it.  Today I have managed a piece of cinnamon raison toast with peanutbutter for breakfast.  It's 11 and I've already had my lunch of spaghetti with a sauce of mushrooms, green peppers and meat and a half piece of garlic toast.  More than I have eaten in the last two days combined.  So grateful as I needed nourishment.

cross posted

kae_md99

i have been wondering about this,do you still drink milk? and if yes,what kind of milk? i read milk has estrogen but it is also a good source of calcium especially for us with anti hormonals

Vixie65

Hi all. This is my first post here. I found out two weeks ago that I have IDC and today I found out that I'm triple positive. I meet with an oncologist tomorrow and have an MRI on Tuesday. When do things become less overwhelming?

Anonymous

Hey.... sorry that your here..but you have landed in a great group of folks...
I'm just newly diagnosed.... its still overwhelming but it did get a little better when we knew what we are dealing with and have a plan of action..
.
Sometimes it feels like a a lot of "hurry up and wait" then it happens all at once...
For me just keeping focus on what is before me has helped... not easy to do...but I keep bring my focus on the next step...not the step that I've got to take 9 months from now...
Right now I'm focus on what I can do for myself before chemo starts next week... I'm focus on the echo cardiogram they are going to do on Tues... and the chemo class I'm taking...
I'm focus on being proactive in my eating and getting this stress under control...
Keeping active is the best thing in the world...
And these ladies are always ready to talk to you ... especially the ones that have been through it...

Hugs from TN.
Denise