TRIPLE POSITIVE GROUP
Comments
-
Hapa, I had TCHP and it ended the end of Sept ‘17 and I wore a wig until Feb ‘18 and a bandana until April. He ceptin slowed the growth and then Anastrozole has killed it too. So thin and bald patches on top. Im using Nioxin to combat it but my MO says none of that except minoxidil work on the damage from the AI. I’m getting highlights this weekend to try and cover it some. Also some of my fingernails are suddenly falling off, even with taking biotin every day 😩
On a good note I am 3 weeks INto the Livestrong program at the ymca. I wish it had started earlier because I have to go back to work soon, and it’s during the day. I’ve met an awesome group of ladies and it’s been fun working out and chatting with them. Dropping my youngest off a total college In 10 days and we’ll officially be empty nesters.
Hope everyone has an awesome weekend. It’s supposed to rain all weekend here and we are excited
0 -
Homemadesal, Bravo! Love the hair pics, keep them coming as inspiration. Have first Herceptin only in a couple of weeks.
0 -
deni- thanks for the words of support. The triple positive diagnosis has been confirmed and there is peace with consistency.
SpecialK - I start Taxol (weekly for 12 weeks) on Friday at Moffitt. Every single person there has been wonderful and caring. It’s only an hour away so manageable for us.
Ingerp- thanks for your ongoinginsights and help.
Wig shopping with the fam today so so we will be ready! One of my silly daughters suggests the nearest Halloween shop! We have promised to keep smiling and laughing. 😊😂😍
0 -
I didn’t go the wig route but a good friend who had OC had a whole assortment that she gave different names to. “I think I’ll go with Betty today.” It was hysterical.
0 -
keepmovin - you did lumpectomy, correct? Will you do rads at Moffitt? If so, they have the Hope Lodge for those coming for treatment from out of town - it is essentially a hotel right next door to the Moffitt facility on campus at USF and is run by the American Cancer Society. It is free to stay there, and especially handy for those with daily treatment like rads.
0 -
Ingerp. My wig is Louise, but she only goes to church, weddings and places where I might feel awkward. She came from a catalog and I chose what % of her could be gray! A regular member of the family. Maybe someday she’ll find a new home in granddaughters dress up box....
0 -
I'm back in the saddle again...this time with examestane. I'm not even reading up on s/e's, so as not to jinx myself. My new onco also prescribed alendronate since I am currently considered osteopenia, instead of osteoporosis as is my past history, before Tamoxifen.
0 -
Met with my PS today about my upcoming BMX with direct to implant recon. It was depressing. She said there was about a 25% chance that my nipple wouldn't be viable and would have to be removed completely even if it can be saved during the mastectomy (which is still up in the air and will be until my BS tests the margins during the surgery) and about a 40% chance that I'll lose some part of the nipple-areola complex, and about another 25% chance of complication requiring explantation of the implant. I feel like the chances of a one and done surgery are so freaking low at this point. I asked the BS yesterday about just doing a lumpectomy and she said that was a horrible idea because of how diffuse my cancer was at dx and I don't really have any choice but mx. So yeah, I guess all I can do now is hope for the best. And maybe eat some extra protein. Surgery is set for Aug 22.
0 -
Special K thanks for the info on Hope Lodge. Will keep that in mind as things progress. I had port implanted yesterday and chemo starts on Friday. Hoping the hour trip won't be too much as treatment moves ahead. Our daughter was treated at Moffitt for thyroid cancer about 9 years ago. She's healthy and we really trust Moffitt so, worth the trip IMHO.
For all,others on this path, keep moving forward. We can do this together
0 -
hapa - I sympathize with you. I started out with skin and nipple sparing BMX with expanders and initially was happy to see that I still looked much like myself when I woke up. If I had it to do over, as much as I advocate for others to consider this surgery, I wish that I had skipped the nipple sparing aspect - due to subsequent surgeries for necrotic skin, and loss of the expander, later replacement, exchange, then later loss of the implant - the nipples lost symmetry. It did nothing but stress me out. I know the feeling of cancer taking so much away but remember that nipples have no feeling for the vast majority, for some stay permanently at attention requiring wearing a bra, and amount to little more than decoration. I’m not trying to minimize the wish to keep them - just trying to make you feel better if you can’t. I no longer have either nipple because of subsequent surgeries and downsizing of implants and I’m actually happier without any than I was with how they ended up. I can’t do 3D tattoos because my skin is so compromised, so I have learned to live with and appreciate what I have, but I have seen beautiful and very realistic work - I would do it in heartbeat if I could.
keepmovin - good luck, try to set your start times around traffic - I would aim for late morning - and know you can get to Moffitt from either I-75 or I-275, so you have options. I’m 10 miles away from there if you ever need anything
0 -
Ok I am increasingly uncomfortable with my plastic surgeon and I don't know what to do about it. My surgery is next week. In my consult today she told me she doesn't use alloderm to make a pocket she just stitches the skin to the muscle to hold the implant in place. I have neverheard of this. I can find nothing on the internet, including Mayo Clinic's own website, that does NOT mention using ADM to support a pre-pec implant. They all mention using Alloderm or ADM
0 -
hapa
TonLee who started this forum wrote in part:
2. THINGS TO REMEMBER (every step of the way).
1. This person works for you. Period.
2. This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period.
3. Advocate for your body like you would a child's, a husband's, a best friend's.
4. No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!
Please read all of her first post. If you are not trusting of your PS and her methodology to reconstruct you, how will this affect your recovery and future surgeries if needed?
Breast reconstruction after a BMX takes time. My time line was July 2016 until March 2018. I had nipple reconstruction and 3D tattooing as well as expanders and the exchange surgery.
Is there someone on your medical team that you trust you can talk too like your Primary Care?
At the very least get a second opinion before your surgery.
It looks like you have are in your chemo treatment so why is 22 August craved in stone?
My PS and his staff were always the happy place I went to. It was there I found hope and people wanting to make me whole again. I pray for you the same.
Love, Vicky
0 -
Vicky- chemo ended five weeks ago. Aug 22 is already longer than I wanted to wait for surgery. I was supposed to have a different PS but he quit the clinic. Changing PS would mean finding a new BS as well. I don't even know if I can find anyone else in this area who does pre pec recon. On the one hand I like the idea of no alloderm because it's one less foreign object in my body,but without it...isn't that why they switched to sub pec in the first place?
0 -
Hapa, there are threads in the reconstruction board that cover pre-pec. I would highly recommend checking that out and pose your question to see if others have had the same protocol. Also,the ask Johns Hopkins site has a message board where you can post your questions. I agree that it is important for your recovery to be comfortable with your decisions. Best wishes
0 -
hapa - there are a number of reasons for the switch from pre-pec to sub-pec for reconstruction patients. There is easier surveillance for recurrence, you can accommodate a larger implant because you are using more infrastructure, and there is less chance of capsular contracture. Also, just wanted to point out that allograft material is used in sub-pectoral reconstruction as well, I would bet that most on this site with sub-pec recon have allograft. The method of stitching skin to muscle to create the pocket is somewhat universal for both types of recon - even in sub-pec this is what is commonly referred to as "pocket work" and is the method of shape refinement and bringing the implant toward the center of the chest to decrease that lateral side boob thing and to help create cleavage after having the pocket created by the expander. I would imagine that implant size is critical in the recon method your PS is discussing - as well as skin integrity, certainly there would be a need to stay on the smaller side without the use of allograft. Is this the plan?
0 -
SpecialK - I am wanting to stay near my current size, which is slightly larger than puny (34B, sometimes a 32C). But we are not switching to sub-pec implants. I told her I'd rather have rippling than have my pecs compromised. I just use them too much at work and live a very active lifestyle outside work. I lift things at work rather often and outside work I do a lot of recreational paddling. So sub-pec just seemed like a bad idea. My worry is that she is not using alloderm, whereas everything I see mentions using it. Is not using alloderm for pre pec implants a thing? Is my skin really going to hold this implant in place?
0 -
hapa - I wish I had more info for you, but I don't know anyone with pre-pec and I was not a candidate for them, so can't tell you too much more. I would survey the ladies on the pre-pec threads and ask about the methods used for them, and how things turned out - particularly if they reconstructed with your same sizing. Also, it is important to know that sub-pec doesn't negate upper body strength for everyone, but you do have to build back to it. I know there are some threads by active people for whom sub-pec was a problem, but that is not a universal truth. Has your PS commented on the sturdiness of pre-pec without allograft considering your active lifestyle? You might also contact whippetmom - she has the breast implant sizing 101 thread. I don't know how extensive her experience is with pre-pec recon but she may have some insights for you.
0 -
hapa,
Haven't undergone reconstruction but I just wanted to wish you well. Even if you were a candidate for a lumpectomy, there's no guarantee that your nipple wouldn't be compromised. My lump was right above my nipple, and when it was removed, the nipple changed in its appearance. (It no longer looks like its buddy on the left.) However, it does still have sensation, so there's that.
Good luck, sorting things out with your PS. I agree with others who suggest that another opinion might be helpful. Also, yes, the recon boards are full of knowledgeable ladies. ((Hugs))
0 -
Hi ladies! I am new here and happy to have found this group! Diagnosed 7/9 and triple positive. Still not clear if triple positive is a good or bad thing.
I had my port in yesterday and start chemo Friday. I am curious if anyone is taking the same “cocktail” I will be on.
Carbopaltin, Herceptin, Taxotere and Perjeta. Once every three weeks.
Just trying to get a good idea of SE’s and work, kids etc...I know everyone is different but everyone I have talked to hasn’t been on this same treatment.
Thank you!!
0 -
Thanks guys.
I have an appointment with a local surgeon who does pre-pec recon tomorrow for a second opinion. And the guy who sits across from me at work has a PS friend who used to do breast recon at Mayo and worked with my PS and BS (this is who recommended my BS to me) and in her opinion, the PS is a good surgeon but just isn't the type of person to give you warm fuzzies. And the friend of friend said she'd do the procedure the same way. I will see what the second opinion lady says tomorrow. So glad I randomly decided to get a copy of my radiology images yesterday. I don't even know why I did that, it was before my appointment and I just thought I might want them. But I'll have them for tomorrow. Now I can get back to work. I have lots to do before I go out on leave.
0 -
Hi SarahNola - I am 38 and triple positive - diagnosed Mar. 27 - I am doing TCH (i am in Canada so I’m not getting the perjeta) - I just had infusion 3 on Monday and so far it has been doable - not easy but not as bad as i imagined- I am not working thru chemo - hoping to be back at work in January- wishing u all the best
0 -
SarahNola - I finished TCHP five weeks ago. I breezed through. I took the whole day off the day of infusions, and I think I took a half day on day 3 of the first three infusions to sleep. Then I also took 1 day off for nausea and vomiting one day when I didn't stay on top of it. Other than that I went to work every day. I worked out five times a week. I even worked out after my infusions some days (gotta get that stuff circulating). I did sleep more than usual though, maybe 10-12 hours a night. So my husband had to walk the dog and clean up after dinner. But besides that my life stayed pretty normal with a higher than normal commitment to working out. I had a ton of side effects but none of them were debilitating except the occasional fatigue and that one day of nausea. A lot of people complain about diarrhea with Perjeta but I did not have that problem. Physically, TCHP wasn't that big of a deal Mentally, on the other hand...well let's just say that I had a lot of anxiety during chemo.
0 -
SarahNola I was told TP is a more aggressive cancer but also has a better outcome because of the targeted therapies.
You might also poke around the “Starting Chemo ___ 2018” threads—there’s a new one every month. There are lots of women getting your tx who will be able to answer your questions.
hapa—all good thoughts your way.
0 -
SarahNola– I'm 26, and I was diagnosed with TP. I just finished with my second infusion of TCHP. Everyone, I think, reacts to it differently. I feel okay the day of, and the day after chemo, but then I feel very fatigued, achy, headache (with light sensitivity), bloated (food doesn't seem to want to move), heartburn, and indigestion. For my gastro issues, my oncologist recommended Mylanta for all of this; nutritionist recommended 4-6oz of celery juice first thing in the AM and wait 45 min before eating anything. I feel this way for about 4-5 days after treatment and then I feel normal again for about 2 weeks until my next infusion. I haven't lost my appetite, I don't really vomit at all, diarrhea was more severe after the first infusion (buy Imodium or anti-diarrheal), but a lot of water can help combat that, and I haven't been totally incapable of working. All in all, like hapa wrote, it doesn't feel entirely debilitating, but you will feel different for a few days. If you're getting Neulasta after infusion, highly recommend buying some Claritin to take after the shot is administered, and for about 3 days after; this helps combat the back pain associated with Neulasta.
As for being TP, I got about 3-4 medical opinions on the matter and the consensus is: TP is easy to treat because of the targeted therapies (Herceptin & Perjeta), though it is an aggressive form of breast cancer. However, math is on your side. By surgery, my oncologist likes to remind me, 60% of women have complete response. I wish you all the best, and much luck. This isn't the easiest, moments can be very trying, and it is life-changing. But, it will bring out a strong side of you that you might have not known was ever there.
0 -
hapa, good luck for your appointment tomorrow. My tumor was right behind my nipple so I lost it and for me it’s no big deal (actually it’s zero deal) but I am not you and I was expecting that from the beginning. I discussed physical activity with the PS and he disputed the concept that you cannot have an active lifestyle after sub pec implants and gave me examples of prior patients with very active lifestyles. I still have the expander but I have no problem staying active including paddling -did a lot of physical therapy to recover range of motion quickly, but no problems with pecs. I have read of other women having trouble with physical activity so I know it’s a thing and I wonder how often it happens and why. My PS also painted the pre pec surgery as unsafe, prone to complications and just not giving good results, so he just doesn’t do it for that reason. I decided to trust him and I am happy with the results so far.
I am sorry you are going through all this trouble and uncertainty. Hopefully the second opinion will help.
Welcome SarahNola. I also wonder if being triple positive is good or bad. Didn’t have your precise treatment so cannot help. Sorry you are in this cancer boat too.
0 -
Thank you ladies from the bottom of my heart. It is not so scary when I don’t feel so alone on this journey.
Xyoungandscared...do you know surgery you are having?
0 -
SarahNola- as of right now, the plan is for a lumpectomy. We will be removing two lymph nodes as well: sentinel lymph node and the left axillary that tested positive for cancer (but came back HER2 negative, but ER+/PR+).
My breast tumor was approximately 1.7cm, and has already significantly shrunk after 2 infusions (oncologist struggled to find where it was during my second infusion). Meeting with my surgeon as a checkup in 2 weeks to discuss lumpectomy vs. mastectomy and if there's any significant difference in reduction for reoccurrence or risk between the two.
0 -
Hi SarahNola. Sorry you have to be here but hope you find the support you need. The best advice for getting through TCHP is as follows: 1. Drink lots of water. 2. Walk as much and as often as you can. For everything else, you’ll be prescribed anti nausea meds and a proton pump inhibitor for acid reflux if you need it. Keep a journal of what you take and how you feel and take it with you to your infusion appointments. The road is longer for triple positives. We’ve all been there. Lean on us and ask questions. I hope you find this board to be as helpful as I did. All the best.
0 -
Hi, SarahNola, I'm still new-ish here, but I can say that this group is of huge help to me. Sorry you have to be here... I'm on a different regimen, so I can't help in that department. You mentioned kids - that's one thing that is trying for me. It's difficult to manage the small kids during vacation (until Sept. here) in the time after infusions. Our family is far away, so no granny nearby... but on the other hand, the kids really take my mind away from cancer.
Regarding Perjeta - I have been discussing it here with you, so I thought I will put an update: Apparently, Perjeta has been approved for early stage BC only this June by European Commission. In my country, it's not yet approved by the neccessary organizations (kind of like FDA, I think) for early stages. But it's approved for neoadjuvant use and later stages. So I thought, let's discuss with my MO and wheen she declines I will go to a principal doctor in another facility (the no. 1 facility in oncology in my country). Well, I must say, I was impressed by the discussion with my MO, I like her. I brought the study as well as some other articles regarding use of Perjeta in the EU. She discussed the percentages with me, the SE (small) and so on. Apparently, I'm kind of borderline case for Perjeta. And then she went to say that she will consult my case with the very principal doctor I planned to go to for a 2nd opinion. So now I wait for my next appointment to learn what will be the outcome. I feel strongly I want Perjeta...
Otherwise, day 3 after 3rd AC and I feel terrible. Nothing particular, just aches and pains here and there, a bit nausea and big, big, fatigue. And I have a visit today, the house is a mess! I don't have the energy to tidy up so I guess we will sit in the garden. I don't want to postpone the visit, since it's a lady from nearby, who is just finishing Herceptin, had the same dx as me last year... she is the same age as me and has kids of almost the same ages as me... She's already been of great support to me and she evwn contacted me herself after learning of my dx through work/friends (we are a smallish community).
Sorry for such a long rant.... and sorry if my English is weird
0 -
JaBoo, your English is fantastic. Good luck with the consult.
On the subject of perjeta, I was one of the few who had a horrible skin reaction to it. I ended up taking steroids for a few months while doing the 6 TCHPs. Not sure which was worse, the skin rash or the steroids. I did the full year of Herceptin but not perjeta because it was only approved for early BC as a neoadjuvant therapy in early 2017. Things changed quickly and now the protocol has expanded. Anyway, this was the exception, not the rule, the skin rash that is.
I worked until my 5th cycle of every 3 weeks of TCHP, then the cumulative effect of the chemo made me so tired that I spent 6 weeks on the couch and crawled into surgery. I’m not telling you these things to scare you. I just wanted to mention that early on while you feel ok, do the things you need to do to get organized for surgery or for a possible few weeks out of commission. It happens to some, but not all. If you can, line up as much help as possible with housekeeping, meals, or child care. You may not need it, but you will have things lined up just in case.
Best wishes
0
