TRIPLE POSITIVE GROUP
Comments
-
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!
0 -
I had to give up coffee and dairy during chemo due to stomach sensitivity, especially the days just after treatment.
0 -
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.
0 -
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
0 -
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
0 -
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))
0 -
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
0 -
hi all,
i am on lupron,when does the MO usually start AI? after surgery
0 -
Kae,
I started my AI about a month after surgery and before I started radiation.
0 -
eleanora - congrats on finishing Herceptin! That is a big milestone!
0 -
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.
0 -
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) 😕😨😨0 -
Also alone. I can't tolerate Benadryl, so am taking regular Claritin right before infusion instead. Works fine so far.
0 -
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.
0 -
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.
0 -
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).
0 -
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))
0 -
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!
0 -
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.
0 -
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
0 -
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
0 -
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?
0 -
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.
Denise0 -
Your welcome ! Any time!
0 -
Hi Vixie!
I felt much better after a scan which showed that my cancer was localized -- breast area + 1 lymph node. Once you know that your cancer is local, you know that there's a chance that you can beat the beast where it's at. ((HUGS))
0 -
Vixie and Hap - it is overwhelming! It does get a little better when a treatment plan is in place but I certainly have relied on these boards to help with the confusion. None of us planned for this and the triple positive diagnosis really threw me for a loop. I had already had surgery and finished rads and thought I was just going in for AI when the MO told me about the HER2.
Be good to yourselves. Don't expect you can come home from chemo and run a marathon. Take people up on offers to help you. In fact, have a list of specific needs - take me to chemo, bring a meal, do my laundry etc. I have one friend who had her friends bring lunch when she was at chemo. (My MO's space wasn't big enough for that but I was touched by the idea.)
Thinking of you both.
0 -
Good luck, HapB! Hope it turns out better than you've expected. ((Hugs))
0 -
HapB, And Vixie,
Hi,
Good luck today! I am sure things will go good! Be positive is all I can say! I started this Cancer Journey January 10th. Huge shock. I have lived my life day by day! Every night I thank god I made it one more day! I do not plan farther out then 1 day. People have learned to just back off and let me be. LOL (guess the bitch in me comes out)
Things to tend to settle down after awhile. As someone said earlier ask for help and take it when offered. This was by far the hardest for me to do as I have always been the "helper" and "doer" in my life.
I have my last AC chemo Monday and I can not wait to get this done. So far I have done 12 Weekly Taxol and 3 Bi-Weekly AC treatments.
Stay strong but yet cry when you need to! You can do this! We can all do this together!!!
Happy Friday!
0 -
HapB
Good Luck today, hope goes well. Think positive thoughts, you got this!
0 -
Hap.... let us know how you are doing ...
Hang in there....
Hugs from TN
Denise0
