ER-, PR-, Her2+ Roll call
Comments
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Thank you everyone for coming back to give us hope. Best wishes for the future!
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robyn- I had a double mastectomy January 29th 2018. Approximately 3 weeks later I began tchp every 3 weeks for 6 rounds. I completed TC in June of 2018. Approximately 3 weeks later I had 25 radiation treatments. I continue to receive h&p until February of next year. I tolerated chemo okay. It is definitely doable. Every few days there would be a new side effect but I was fortunate my side effects were minimal and short-term. I would develop blisters on my hands and forearms and they would disappear within two to three days. Fatigue is a factor but some people experience it worse than others. I was able to work throughout chemo and ran almost daily. My worst side effects were Vision difficulties especially with close vision and the horrible metallic taste with eating. I rarely experience any diarrhea or constipation . So many wonderful women on these threads helped me through the difficult times and provided incredible support. I chose not to have reconstruction. Good luck. I also took lotramadine 3 to 5 days prior to chemo and I continue to do it with herceptin and perjetta. I asked attribute this to having minimal muscle /bone pain On a couple of occasions, I experienced a disconnect from my brain and my body. This to passed within a couple of days. Good luck
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Recently diagnosed. 7 nodes positive. Stage 111. Grade 3. The first few days were a blurr. Just beginning to cope now. I am a Christian and holding on to God's promises.
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Hello ladies! Just checking in hoping to chat with those who may have had abnormal echo during the course of Herceptin. I was to have 3 treatments left and now I'm on hold pending time, rest and a follow-up echo. I'm at 45-50% EF now. I was so excited to be done with treatment, and now the true end date is uncertain. Thanks for any insight.
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Hi mjb1018. I had an echocardiogram that showed a 7-8% increase in the thickness of a ventricle wall, and my EF dropped from 55-60% down to 50%.
The cardiologist hooked me up to an EKG, gave me a blood test, explained how echocardiograms have a HUGE margin of error, and declared my heart to actually be in perfect shape. So you never know!
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Thank you 06elise! I saw my MO this morning and if my Herceptin treatment for tomorrow hadn't already been cancelled I could have gone ahead with it.
He said I'm still within range and it didn't drop by 10%. Since it was already cancelled, we are going ahead with the break and will be retested later this month to hopefully resume Herceptin on the 30th. That may be my last treatment since he said we won't go beyond the original stop date. 0 -
mjb- I've had 2 echocardiograms. The first was the fourth month of chemo with H/P and the second was 2 wks ago. EF has stayed between 65-75%. I finished herceptin and perjeta at the end of January. So I'm hoping my future Echo remain good. I'm due for cataract surgery on November 26th. So I'm scheduled for an EKG now. Ironically they wouldn't accept the results of my echo. I run or power walk daily so I'm very much aware if there's any changes with my breathing.
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That's great, jo! 65-75%! I wasn't even that high before I started herceptin...Not sure what I was before I started AC because the echos didn't start until after...Fingers crossed I see some improvement when I go again on the 21st. Thanks for sharing!
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mjb- my fingers are crossed for you.
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Thanks jo!
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Hi, I was diagnosed in February and I've found this site so helpful. I'm so glad to find this group of women with a similar diagnosis to mine. I'm through chemo TCHP x 6 and radiation. Now I'm just on HP every 3 weeks through February 2019. I didn't have a pCR although my response was good. All of the cancer was gone in my breast, but I had some remaining in my lymph nodes (2). This is going to sound crazy but I just don't trust my MO's rosy odds of my chance of recurrence. I was told 10 to 15% chance. This seems too good to be true. Especially when I look at stats online. I'm driving myself crazy worrying about this. My husband thinks I'm insane for not believing the MO. Do these odds seem believable to you guys? Any advice on living with recurrence fear?
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AbbyPuff, the fear of recurrence is probably the most talked about issue after a diagnosis.
Here are a few pages you may want to look at that could have a helpful suggestion or two. You are certainly not alone with this.
Also, sometimes it's helpful to seek a second opinion if you feel you could benefit from hearing another professional opinion, and for ease of mind.
10 Ways to Manage Fear After Diagnosis
We welcome you to our community, and are here for you.
And FINGERS CROSSED as well
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Abby- my situation is very similar to yours. I will finish my h&p in January of 2019. My Mo gave me a 15% reoccurrence rate. My MO is the director of bc research at a major cancer Center. He's very nice and professional but he has never sugar-coated anything for me. I did seek a second opinion and received the same recurrence rate.
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JO6359,
Just wanted to say that I admire your discipline and ability to cope through all of this. You tolerated chemo and ran on an “almost" consistent basis. Although I am jealous, I am HUGELY proud of your accomplishments. You are an inspiration.
Giveityourall
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JO, thank you so much, that does make me feel better about my MO’s opinion. Have your doctors mentioned nerlynx? I read some studies that suggested it’s not effective for hr- patients. Has anyone been told this? My MO doesn’t seem to know too much about the drug.
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Abby - below is a link to the Nerlynx thread. I believe it you are correct - it is only for HER2+ and only within a certain time after finishing Herceptin. This will give you more info.
https://community.breastcancer.org/forum/80/topics...
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MinusTwo, thanks for the link I’ll check that out
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giveityourall- do not give me too much credit. Attempting to stick to a lifelong ( adult) schedule of running / power-walking kept me grounded ( most of the time ). Reading other women's inspirational stories inspired and motivated me throughout the process of diagnosis, surgery, chemo, radiation and targeted therapy, etc. I had so much support when I was feeling overwhelmed or needed a clarification on yet another new side effect. After I complete h&p in February, the plan will be scans. No more meds unless the cancer returns. I believe for most of us the biggest fear or cause of anxiety is the possibility of reoccurrence. When treatments end, it'll be a relief on one hand and scary on the other hand. It's good to know the support is here.
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Hello all, new here and glad to have found this forum. I received my diagnosis 2 months ago and have now had 3 cycles of AC chemo. One more and then I will move on to 12x taxol weekly with herceptin every 3 weeks for 18 cycles and perjeta every 3 weeks for 4 cycles. Before I started treatment my MO estimated my chance of recurrence at 35% but said it would reduce if I responded well to treatment and so far my tumour has gone from over 8cm to no real mass to measure although still a bit of swelling and dimpling.
I am reassured to read others are getting a 10-15% recurrence rate although my tumour was massive to begin with (with at least one lymph node affected) so may be worse for me. I also have DCIS so no option of lumpectomy. My dx is not showing up but it’s locally advanced and grade 2-3.
I have the option of mastectomy after chemo withtemporary tissue implant then radiotherapy for 15 sessions then 6 months later a permanent DIEP reconstruction or radiotherapy after chemo followed by surgery with immediate reconstruction. I'm erring towards the later to get surgery done in one hit but interested in any thoughts.
Finally I've asked my MO about neratinib and she's on the fence saying SEs are v bad plus works better for ER+ ladies but my instinct is to throw everything at it. I'm only 42 with 2 under 5. Again any thoughts appreciated- you seem to be a bit more ahead in the States than here inAustralia 😊
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Hi Simmi1. Welcome to the group (which sounds a little weird; we're always sad to see others in this boat!)
I also had AC-THP (dose-dense) in early 2016, and although my lymph nodes were not involved, both breasts were (to varying extents). My doctors gave me the option of a mastectomy + lumpectomy + radiation, or a bilateral mastectomy ("DMX") with concurrent reconstruction; they told me that a DMX would mean I wouldn't need any radiation. They also offered to separate the DMX from the reconstruction, but they really didn't encourage me to go that route... and I really didn't want to be put under anesthesia for two separate hours-long surgeries, anyway.
I opted for the DMX with immediate DIEP reconstruction. My left mastectomy was considered to be prophylactic (which maybe only matters with American insurance...?) It was about an 11 hour surgery, with 3 surgeons operating at the same time!
Even though recovery was tough - REALLY tough for the first month, but still a struggle the second - I have absolutely no regrets! Although I wish I had spent a little more time pondering the fact that my breasts would no longer be erogenous zones. (Of course they were actually sources of pain for 6-8 weeks, with sharp "nerve pangs" that still occasionally occur, though much less intensely). But the surgeons did an amazing job! And I'm especially pleased that I'll never have another mammogram, and never ever need to wait for the results.
Nerlynx (neratinib) also came up during one of my follow-up visits, but I never did take it... I think for the same reasons you mentioned.
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Simmi1, we too hate to welcome you to the club nobody wants to join, but happy you found our community.
Sounds like your doctor is really on top of it. You have a lot of decisions to make, and hopefully reading the boards, and hearing responses will help guide your decisions.
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Thank you 06Elise and Moderators for your responses. I was just wondering Elise how you found Taxol in comparison to AC? I have found AC a bit tough going but manageable - I’m not doing dose dense so on a standard 3 week cycle. I’m a bit nervous about moving onto a weekly cycle even though I’m assured the new infusion is “easier”.
Although my left breast is not affected I’ve also been given the option of a double Mastectomy but erring on side of just the affected breast but I have a bit of time to decide.
I think also with neratinib that women who have been taking it didn’t also have perjeta as both relatively new. That’s what my MO thought. Not sure if that’s also experience on this board? It will be January 2020 before I finish my year of herceptin so again plenty of time to decide!
Thanks again for the advice
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simmi- 1 out of 18 lymph nodes were positive. My oncologist told me once I complete my year of herceptin and perjeta reoccurrence would be approximately 15%. Fortunately with surgery I had clean margins. I have minimal neuropathy in the toes of both feet but my doctor attributes this to taxoterer or possibly herceptin. He believes it's reversible. I chose no reconstruction with no regrets. Each of us are different. Best of luck to you.
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Simmi1, definitely don't jump to any decision about a DMX. Your decision-making process is bound to be really different from mine; for example, if you're thinking of ever having another child, that one good breast could come in very handy!
Taxol gave me FAR fewer symptoms, and they seemed a lot more tolerable, up until the last couple weeks... although I've heard really radically different stories from different people here. As for me:
- AC made everything taste like I was licking the bottom of a fishtank; Taxol let my tastebuds return to normal.
- My AC nausea also went away completely on Taxol.
- AC made my bones ache with a dull pain; all that pain went away completely on Taxol.
(Or was it the Neulasta they gave me on AC but not on Taxol??) - AC put me to sleep for nearly three straight days after each dose, even though I was on dexamethasone (a steroid); Taxol gave me no sleep issues at all.
- AC made my hair fall out, thinning after the first dose, falling out in clumps after the second. Taxol kept my hair from regrowing, plus the hair in my nostrils and on my face started falling out, too. (I'm really not very good with makeup, so this was a bit of an issue LOL)
Important Tip: Keep tissues in every pocket! No nasal hair means a constantly runny nose!
But my biggest issue with Taxol crept up on me very gradually: neuropathy in my fingers and toes. It didn't affect me at all at first; it seemed to slowly build with each dose. So "a little numb" eventually changed to "pins and needles."
My oncologist actually stopped me after I had 10 of 12 doses because my fingertips and toenails started looking a little bruised, and the "tingling" started making it difficult to do things like tie my shoes. ("Tingling" is too "cute" of a word to describe the sensation, but I'm at a loss right now...)
Anyway, because it crept up on me so gradually, I was a little shocked when he decided to stop my Taxol infusions. But I was already done with Perjeta, and none of this effected a change in my Herceptin schedule.
And more importantly, I'm pleased to report that every symptom DID go away!
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Jo,
I know that most women, including me and maybe you, downplay our wonderful character traits and focus more on our flaws. With that said, I am reminding you of your unbelievable strength and discipline regarding your personal care. You needed to run and I bet your body benefited from the workout. I would assume the increased circulation, release of wonderful endorphins, faster excretion of toxins, etc. boosted your immune system and ability to heal physiologically.
Jo, I tried to emulate your routine. I am a workout nut and tried to maintain an exercise regimen. Puking and anemic, I was grateful for two days of exercise per week. So, I am in awe of your determination and commitment. You are a fighter!!
Giveityourall
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Simmi1, I am pleased with your results. The meds worked. That is a great thing. However, I think of cancer as insidious - sly and creative - so, I like to err on the side of caution. As such, I decided to undergo a double mastectomy. For me, I thought it was my best choice. I had HER2, an aggressive cancer. I did the neoadjuvant thing and then got that horrid shrunken mass removed. i know they say a Rolaid spells R-E-L-I-E-F, but I think cancer free (no evidence of disease) spells R-E-L-I-E-F!!! I was so glad to get that THING out of me.
Giveityourall
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giveityourall- one of the happiest moments of my life was when I had my double mastectomy and the cancer was out of my body. RELIEF!
Thank you so much for your kind words.
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Thanks all for the advice. So nice to hear positive stories. I just had my third round of AC 4 days ago and feeling a bit rubbish and sorry for myself that this had to happen to me 🙁. Thanks for advice re: taxol Elise. Glad all symptoms went. Just one last question re: perjeta. How many doses did you have? My MO is suggesting 4. It’s not actually funded here in Australia for non-metastatic disease so I’m having to self fund it but by the sounds of things it will be worth it. Anything to get rid of this beast once and for all!!
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Simmi1,
Unsure of Aussie health insurance rules, I wanted to let u know that Genentech does have a patience assistant program. I assume its applicable to all of us - whether we live with alligators or crocodiles.
On a side note, only China and the USA have alligators. However, since Americans love exotic pets, they purchased crocodiles and brought the little reptiles to the mainland. Now, we are truly fortunate to house both of these massively huge, inverted-teeth creatures.
Giveityourall
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Jo6359,
Isn't it weird how the removed tumor elevated our emotions? Our minds and bodies are truly symbiotic. I wonder if the mind/body correlation could affect neoadjuvant therapy's projected result. If the neoadjuvant setting- delaying surgery by four to five months- bothered a patient, could his/her anxiety affect the medicine's treatment. Hmmmmm... something to ponder.
As for my comments about your disciplined nature, I meant it. Your focused commitment to your health will serve u well.
Giveityoural
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