TRIPLE POSITIVE GROUP
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Coachvicky and suburbs, thanks for directing me to DEIL and whippetmom threads. I keep going back and forth, but perhaps implants would work. I’m going to see PS again, but can’t get in for over a month, GIVE ME A BREAK. I’m not impressed with time they are allowing me to ask questions, apparently a 1/2 hr appointment should have been sufficient for me to figure all this out. My next apt is 10 minutes. Unfortunately there just aren’t a lot of experienced PS here that I’m comfortable with so will have to be patient. But he will have to have security throw me out at next appointment because I’m not leaving until I get all my questions answered.
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hi ladies! would love to hear from anyone that completed surgery and/ or chemo/ radiation and is still on herceptin .
any side effects at all or back to “normal” living?
well I guess what is our new normal. I am not quite there yet but doing some research on what to expect.
Thank you! ❤️
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SarahNola - I've had three herceptin only infusions so far and I notice zero side effects.
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thanks hapa! great to hear!
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I completed chemo in March and have been receiving Herceptin and Perjeta only since. The only side effect I experience is a runny nose.
Looking forward to seeing the end of that soon!
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JaBoo, I certainly understand your concern having a close margin. One of my margin's is also close, less than 1mm. I didn't realize it until I was about to start radiation. The surgeon, who was a general surgeon, told my husband that he had gotten clean margins, and I was so freaked out about the Her2 diagnosis, that I missed that little detail on the pathology report.
An article about Dr. Martine Moossdorf's work in the field of local recurrence in early stage breast cancer was published here: https://www.medscape.com/viewarticle/859934
However, because the study included patients from 2005 -2008, it is difficult to know how many of the Her2 + patients received Herceptin, as well as, how many had lumpectomy vs mastectomy.
This past weekend, I found Dr. Moossdorf's original thesis from which this article was derived. You can find it here: https://www.globalacademicpress.com/ebooks/martine_moossdorff/mobile/index.html#p=1
It doesn't provide total clarity but it might be a place to start. If you are a statistics geek (that would be me!), it is interesting reading.
Chapter 6 – Local recurrence after mastectomy for breast cancer in the current era – which subgroups are still at risk. (Very good chart shows the 5-year difference between those who got Chemo and Herceptin vs. those who got chemo alone.)
Chapter 7 – Conditional Local Recurrence: The effect of event-free years on the risk of 5- year local recurrence in different subtypes on breast cancer. (This is the chapter from which the article was taken. Less than half of Her2 patients received Herceptin and it's still difficult to tell how many E+ Her2+ had lumpectomy vs mastectomy.)
Chapter 8 – Conditional regional recurrence for different subtypes of Breast Cancer. (In this one you can compare T1 and T2 node negative tumors with a chart of T1 and T2 one node positive tumors. Again, it is difficult to figure out lumpectomy vs mastectomy and Herceptin/no Herceptin except by extrapolating from the over all data.)
I don't know if this is helpful or not in your decision making, but thought I would share the information with you.
Sending gentle cyber hugs your way.
(Edited to correct second link - I hope!)
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JaBoo, you’re English is very good and your posts can never be too long. Based on what you shared, it seems as if you have an excellent understanding of your situation and your options. Being triple positive can be complicated. I often wanted a flow chart. If this, then that. Not this, then that. If you aren’t keeping a journal, I might recommend doing so as there is a large quantity of information to absorb. A list of pros and cons can help make your decisions easier. Since you are young, it makes even more sense to take your time and be comfortable with your decision. You are not vain, anxious or dumb. Considering your options carefully makes sense. Hang in there and keep on posting.0
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Sarah--everybody told me there would be absolutely no SEs from the Herceptin only infusions and that's been largely the case, except I swear I feel a little "off" for a few days afterwards. Nothing to interrupt my routine, and maybe I'm imagining it (I didn't realize until shortly before I started that you get three times the dose you were getting with Taxol), but if you notice anything at all it shouldn't be much.
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When I was taking H and P with Taxol it was hard to know which side effects went with which drug. Glad to have that mess over with. Have been on only H and P since mid-June, and side effects are runny nose and lately, an excess of histamine, which presents as a rash, a sensitivity to bee stings and to red wine (the horror...). At first I thought it was related to radiation, but with radiation done on August 9, we find otherwise. I can keep it in control with Triamcinolone (prescription strength hydrocortisone) and with various types of anti-histamine, especially Benadryl to sleep. I've been sensitive to bee stings my whole life, so this is no surprise, but I do love red wine. My MO wrote a prescription for a course of steroids but I haven't taken it yet, not sure why I am waiting except that I am heartily sick of adding more chemicals to my body. Done with H and P in late March, though. I can deal with this.
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Hi princess - thank you for the kind thoughts! I am glad your numbers are up and you can resume HP. I think it is wise to have your exchange surgery when the time is right for you. Your mind and body need to be strong and healthy. Coach Vicky always reminds us that WE are in charge of the decisions related to our bodies and I think that is great advice. A good team of doctors will support whatever decision you make and their role is to provide options and accurate facts. My first MO’s approach was more of a “do as I tell you” and whenever I had questions she dismissed them and veered me back to the one track treatment option at that facility. My current MO and PS are much more collaborative and that gives me peace of my mind with my decisions.
Best wishes for a problem free infusion tomorrow. Hugs
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SarahNola - I had the dreaded runny nose and usually felt sluggish for a day or 2 after. I worked full time and even traveled for work during my entire HP treatments so it really wasn’t too bad for me.
I am just over a year since my last HP and I feel great. The only issues I have now are from the AI but very manageable, especially if it keeps me from recurrence.0 -
Jaboo, I’m glad you feel this is a safe place to express everything you’re thinking and feeling, your post is definitely not long and we’re here to support! The reconstruction decision is very tough. I wanted a lumpectomy because my tumor shrunk so much it was no longer visible but my BS and MO recommended mastectomy. I had 2 tumors far apart and enhancements on the outer quadrant. They did not feel a lumpectomy was the right choice because there was just too much cancer in the breast. However, they did say the choice was up to me. I opted for a Unilateral because I wanted the option that gave me the best outcome to avoid recurrence. I am VERY happy they insisted on a mastectomy because they did find a few single cancer cells left in the breast tissue. So if I would have had a lumpectomy those cancer cells could have been missed. In my opinion a mastectomy gets rid of the diseased breast and for me personally that has given me peace of mind. This is just my opinion and I don’t want to sway anyone in a certain direction. With that said, I think a second opinion might give you another perspective to help you make your decision. Again, this is a tough decision and very personal.
I pray you find the support and peace you need with your decision.0 -
Tess11, thank you for sharing your research. I've read carefully those chapters. I then went on to search for similar research in my country and found some. Your thoughts are very helpfull.
Suburbs, I very much appreciate your insights. I totally get what you mean with the flowchart. Maybe the MOs should prepare those for the patients, wouldn't that be great!? Anfld yes, I'm keeping a C-journal. That helps a lot. Each appointment gets a page, I can look back at what was discussed... Very convenient.
Denni1661, that's great you have found such peace with your operation. Your team was really fighting for you. I am gratefull you shared your story, thank you so much.
Today I was able to secure an appointment for 2nd opinion. Next Thursdy. It's a MO specializing in patients under 40, which is why I contacted him. I wonder what I'll learn.
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Hello all
I had my first round of TCHP on Monday. So far I’m feeling O.K. I realize it’s different for each, but I’m just wondering if side effects come slowly? Is there anyone that didn’t experience many side effects at all or is it only a matter of time?
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Cp78657:
Typically I have some degree of muscle burning the day after. My first side effects are actually from the anti nausea meds, which cause a bad taste in my mouth, and the dexamethasone, which gives me acid reflux if did not start the Prilosec in time, and the dexamethasone withdrawal, which turns me red and makes my throat/esophagus tender.
The taxotere/carboplatin side effects I get usually start with the muscle burning on day 2 or 3. My weakness and burning peak around day 4 to 7. Around day I start to get stomach cramps and around day 9 or 10 the chemo starts to affect my taste but it only does so severely for about 3 days.
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hi Cp7865, I’m on TCHP and usually i feel fine for a couple days then after I’m done with steroids some SE kick in. My biggest issue has been constipation, then diarrhea with fatigue. It usually hits me day 3 through day 10. Goof luck and hope all goes well.
Has anyone started getting sores on their mouth? I have noticed a couple of places that are sore but just don’t know if maybe I cut while brushing
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Mactaz...I had bad mouth sores after my first infusion. Before the second one I “swished” with baking soda and salt water for a couple of days and also after infusion for about a week. Didn’t get mouth sores 2nd time.
I switched to a soft toothbrush and biotene toothpaste. Biotene also has a rinse that is good.
Hope that helps
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thanks sarahnola, I’m using biogenesis and the rinse but I will add a baking soda rinse also to see if that helps
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For you newbies (and maybe some oldbies, lol!) - I was diagnosed 8 years ago today, 2.6cm tumor with two pos nodes. I had 6 TCH (Perjeta was not yet approved) and BMX, and did a Her2+ recurrence prevention vaccine trial. I just want to hold this day out to you as a beacon of light in the dark because I remember well how frightening things are at the beginning. Use this to hang in through your upcoming treatment and know that you can get to the other side of what seems like a sometimes insurmountable situation. You can do this!
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Thanks for sharing your inspiring message, SpecialK! Wonderful news on your 8 years and cheers to many, many more!
--The Mods
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mods - thank you so much
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Congrats SpecialK!
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hapa - thanks! Sometimes seems like 100 years ago, and sometimes seems like yesterday - but I am happy to be here to mark the day.
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Wow, SpecialK, thank you so much for sharing! That really is inspiring and fills us newbies with hope... Wish you many healthfull decades more!
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Congrats SpecialK!!!
For the "Her2+ recurrence prevention vaccine trial", was that done before surgery or after?
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Lily - This trial is going in Tampa for women with residual disease after neoadjuvant therapy:
https://www.moffitt.org/clinical-trials-and-studies/clinical-trial-19117
I thought about doing it, but I would rather do adjuvant Ibrance if my MO can convince BCBS to pay for it. You'd have to travel to Tampa for it several times though. But hanging out in Tampa was a sacrifice I was willing to make for my health, lol!
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Thank you, hapa!
Then it has to be after surgery since residual disease or not disease can only be verified by then, correct?
Thanks again
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lily - when I was treated neoadjuvent chemo was only done for lumpectomy vs mastectomy, or to achieve margins from skin or chest wall, so I definitely did surgery first. This trial (linked) was a recurrence prevention trial so it was done after my last Herceptin as the focus was to add a preventative aspect to completed treatment. The vaccine is still being tested and hopefully will come to the market sometime soon in some form. The arm of the trial I was in (I did receive the vaccine, not the placebo) did exceedingly well in terms of DFS
https://clinicaltrials.gov/ct2/show/NCT00524277
If anyone is considering the trial at Moffitt you are welcome to stay at my house - I live 10 miles away. I’m serious. I did the above trial in Washington DC - one reason I chose that location (this trial was not offered here in Tampa) is that I lived there for 10 years and had many friends that still lived there and let me stay with them when I flew up for the every six month consults/injections/labs. It was a tangible way my friends could help me and ignore was awesome to spend time with them
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I just wanted to join in with SpecialK - I am 8 years out from my triple positive dx too. My dx was in September (the day before my wedding anniversary) and I remember how numb I felt. It was happening to someone else, not me. It was a tough journey, but I got through it - as you all will or have done.
Then when I was dx with triple negative in the other breast 5 years later, my world fell apart all over again. But - again I got through it, and am 3 years out from that dx.
We are all more resilient than we realise. I love the saying "when you are going through hell, keep going" it's spot on for us.
You really will get to a point where bc doesn't consume your every waking (and sometimes sleeping) hours. You will find a new "normal" that in many ways will see you as a stronger person. You will appreciate life more, and hopefully make sure each moment counts.
Trish
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trisha-anne - congrats to my fellow Sept 2010 compatriot!
You are wise to quote Winston Churchill - that is exactly what it takes to get through the slog that is TP treatment, right! You don’t have to be brave, you just have to show up.
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