TRIPLE POSITIVE GROUP
Comments
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I'm getting weekly Taxol with Hercepton and Perjeta every three weeks. Tomorrow is my 11th treatment. My scalp is almost completely covered with hair. I wish I could say the hair on my legs stopped growing but it didn't.
My eyebrows are almost gone. My eyelashes are in varying lengths but mostly just short. Don't worry...it will start growing soon! 0 -
Today is the 3rd anniversary of my dx. That means I will be 3 years after BMX next month. Wow. Seems so long ago.
Much love to all.
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Happy Anniversary moon! I hope you have many more years with NED.
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Moon have some fun celebrating your anniversary with NED. Congrats
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Congrats Moon. Hooray...
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Yay for Moon --- Congrats!!!
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Congrats Moon!!
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I don't post often but love this thread!
Congratulations, Moon!
Vettegirl - my genetic testing experience has been similar to yours although timelines seem to be extended here in Canada. My BRCA was negative as expected but they are particularly interested in possibility of Lynch Syndrome on my father's side and Cowden's on maternal side. I had an exam with a geneticist as well and we are waiting for results. Had to get/give permission for testing of tumors from my Mom, Father and one of my Paternal aunts.
Re: Tamoxifen - my MO did allow me to cut it back to 10mg a day, she said there was no clear data on effective dose. I will have a dexascan early December and then move to AI in January.
Ashla - yay! Re - hair moment. My experience was came in white and very curly, now it is back to brown without use of hair color - straighter and less thick than it had been prior to chemo, appointment this afternoon for a cut as I still don't quite know what to do with it either
Take care all
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Congrats Moon!!
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Yay Moon!!
xoxo
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hi Websister!!! Been awhile:)
Congrats Moon!! For all the newbies, Moon took the long way here with enormous grace......
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Hi everyone, I'm so behind and reading, but I wanted to check in and see how everyone is doing. I just got back from Switzerland, for business, but it was gorgeous. I gained back 3 of the 23 lbs I've lost on Weight Watchers, but it was worth every bite. If you are a chocolate fan, beware. I'm not hugely in love with sweets and I was chowing down big time on all of the fabulous chocolate...
Welcome to the newbies! I found BC.org the evening after I was diagnosed and these boards made everything so much better. It just helps so much to vent and wail. So knock yourselves out, we are here and did that too. :-)
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Yay Moon! Congrats!!! I can't wait for three years so I can get out of the recurrence hot zone.
Debiann, feel free to PM me with arimidex questions. I had terrible side effects for the first few months and was actually considering buying a cane for travels. My NP told me to just hang in there, that they do go away, but that they would get worse before they got better. Lots of joint pain and stiffness, especially in my feet and knees. Well, all of a sudden, poof! They were gone. Now, not much of anything but a few hot/warm flashes here and there. So hang in there :-)
Hair, oh my hair. I lost all of it 2 weeks after my first TCH treatment. Because I'd been hospitalized with a low white count fever (I was bubble girl) I went on taxol weekly with herceptin. No hair grew during those 12 weeks. Then nothing at all for the month following. I was still chrome dome. I was pretty worried, but suddenly all of this grey and black hair came in and it grew pretty slowly. It was finer and curlier and much blacker than my normal black. Lots of grey. I had it colored, and it grows at the same rate it used to, but it is still finer. I had super coarse hair though, so I'm not too sad about that. I took biotin every night, sometimes 3 or 4. Heck, they are a water soluble B vitamin, so if you don't use them, you just pee them out. No toxicity.
Congrats Ashla for hair in your eyes!!
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Pbrain!!! good to see you here. 3 pounds. Hell you can lose that in 2 days. Just don't eat anything salty
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Hi there triple friends,
I am struggling with constantly watery, teary eyes. It is the symptom that is flooring me these days, more than fatigue and neuropathy. My opthamologist agreed that it is a side effect of chemotherapy. He gave me a non steroidal drop, but it is not helping at all. He said that steroid drops might work, but come with other concerning side effects. I recall we discussed this symptom awhile back. Anyone sharing my symptom? Any suggestions? I hope that this will fade when treatment ends. I have two more chemo treatments, surgery, radiation, then the year of herceptin of course. I think the perjeta is the culprit, and hope that these tears will stop falling when perjeta is out of my system.
Thanks, Jeni
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I had the meeting with my MO today about my choice of hormone therapy. Last week she printed off my results from Adjuvant Online and we went over them today. The results aren't correct because they don't take my Her2 pos status into account. She said even if the results end up a little higher, that Herceptin would give me an absolute risk reduction of 49%. That is huge! And that doesn't even take into account the Perjeta. I asked what she thought my recurrence risk was and she said if she had to give a range it would be 10-20%. Although she thought I would be closer to 10 than 20. That is based on the Herceptin and Perjeta. She really thinks I would be better off on Tamoxifen due to my age but acknowledged that the results for Adjuvant showed a 5% difference in 5 yrs of Tamox vs 2 yrs Tamox and 3 yrs AI. Of course both of those are only for 5 yrs of hormone therapy instead of the possible recommended time of 10 yrs. I told her I was strongly leaning towards O/S + AI because of the higher risk with Tamoxifen. She said there wasn't a lot of strong data showing suppressing ovaries and taking an AI was better for premenopausal women. I briefly discussed with my hubby over the phone tonight (he's out of state). His first response is that he wants me to do what makes me most comfortable. He doesn't want me to stress about this. Of course he would prefer that I/we don't have to deal with the menopausal issues. We'll discuss more when he gets back home. I told her I'd have an answer for her on the 26th when we meet again.
Recurrence is a big stress for me right now. My MIL was diagnosed with pancreatic cancer in Aug of 2013. She went through Chemo and radiation from Sept 2013 through May 2014 with a couple breaks in between. In August 2014 her PET scan showed the tumor shrunk down to almost nothing and was dead. 3 weeks ago a new scan (after she was admitted to the ER for pain) showed the cancer was back on her liver. It caused tears that resulted in leakage in her ab cavity. 2 weeks ago her MO told her to get her affairs in order. In August her NP told her she was in remission. This is devastating to us.
She is going downhill fast. 0 -
I meant to ask if anyone had the link to the recent study showing the reduced risk with O/S plus AI over Tamox? I have found a couple but one was dated 2010 and the other Dec 2013. I was thinking there was a newer one from the summer? Thanks in advance if you do!
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Jenifer - many of had "taxo-tears" it is very common, and actually due to eye dryness. Try to use drops that have lubricant in them and see if it improves. Mine continued until about eight weeks after chemo ended.
Momma - I'm so sorry to hear about your mil - pancreatic cancer is tough. My brother had bile duct ca and was very sick - he was given the same instruction by his doc. It is very hard - wish I could do more than say I understand how you are feeling.
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Hi ladies I've been silently watching/reading the board....I have not met with MO yet but suspect it's sometime next week....I have a copy of my pathology report. Went in thinking DCIS came out after dbl mastectomy to find out grad III IDC her2+++ ,....UGH the bumpy cancer road we travel. I have a question well a few but I don't want to get too far ahead I'm curious anyone on this board ever had just herceptin without the chemo? There's going to be an issue for me and chemo...I had lethal dosages of it with childhood cancer and was told I'm basically immune now....thanks in advance for reading and any input I'd love to hear.
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moon yay!!!
Momma. I dont have the current studies but if u PM varociousreader she has it. I have an appointment with my MO A week after SABC to discuss the results I will report back ( its in December)
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swoobs. Do you know how large the invasive component is?
I'm in Toronto Ontario if you want to PM me to chat
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JeniferE Yes I remember the Taxotears. I used to read or play video games during chemo but I couldn't once the eyes started tearing. Annoying as all hell. I used drops but I didn't think it made a difference.
Mommato3 if you're really confused you can always get a 2nd opinion. You can still stay with the same MObut nothing wrong with hearing another MO's POV. Just make sure you find on that explains their opinions.
Swoobs There are women that haven't been able to complete chemo and just did hercepetin. Are they considering giving you Perjeta too? I wonder if you are a candidate for Kadcyla?
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it's 1.3 cm and was 10mm clear margin but my entire breast was DCIS IVE never heard of kadcyla?
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kadcyla has been approved for metastatic HER2+ breast cancer here in the US. I do believe they are now doing studies on early stage. It's like super Herceptin. It's like having Herceptin and chemo except the it only targets the cancer cells. It's very pricey.
Is your breast all DCIS? It's not unusual for DCIS to be HER2+. About 1/2 are but only about 1/4 of all invasive breast cancers are HER2+. You might not even need the chemo.
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Swoobs if your invasive component is 1.3cm the recommendation would be chemo but perhaps with your history they may do a more gentler protocol. By immune they probably mean that you have reached a lifetime limit of chemo in certain drugs (ie FEC or A/C) There are some studies released on taxol plus Herceptin only for early stage that you may want to discuss with your MO (there is an entire thread here about people doing that protocol) I don't know if you would have access to Kadcyla in Canada - maybe for your particular unique situation you could appeal OHIP.
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well you ladies know your stuff ....I like it !
Yes I think the her2 is DCIS ....however the IDC is grade III so I realize protocol is chemo, but the way it was explained to me is that b/c of the types I had and the dosage level (methotrexate and adrimixin) sp? That it's pointless to administer those or sister drugs to me that's it doesn't lower my percentage of reoccurrence. I'm itching for the appointment I was also told by genetics they may need an extra week to do research and come up with a plan to offer me to not be surprized if it takes awhile to hear from them. I had to quit my last few chemo treatments in 1982 from renal failure and I've had kidney cancer which also leaves me vulnerable with side effects of chemo ..... I'll look and see what's in the other thread you speak of. Thank you so much.
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JenniferE - My eyes and nose starting watering like crazy around my 3rd TCH infusion and just got worse after the 4th. I did not have Perjeta. You just have to carry tissues in every pocket and give up on eye make-up. It was too hard to put it on streaming eyes and then I couldn't keep it on. I am about 2 months out from my 4th infusion and my eye only water a little when I'm trying to put on makeup. The Herceptin injusions that I am still getting every 3 weeks makes my nose run a little but nothing like TCH did!
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Jeni my eyes are watering like crazy as well.
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I don't post much but I do read this tread everyday. Had my 3 year mammo this am. All good. Note to the newbies- I was 73 years old when diagnosed now 76 and NED. This thread was god send to me when I was dealing with chemo,herception and radiation.. Lago,SpecialK and Ashla held my hand thru all of it. Thanks again ladies for the support. Hope everyone is well and will enjoy the best Thanksgiving ever..
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3 year happy dance for Eileenohio. You know this is a big one. At least after 3 years I knew I was going to be OK. I mean after 2 I felt good but 3 really sealed it for me. (Most recurrances happen in the first 2 -3 years after diagnosis).
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