TRIPLE POSITIVE GROUP
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LilyCh, first I’m glad that you have finally gotten some good news but what a confusing and upsetting time you have been through. There is so much that our caretakers don’t know and such different protocols that it is crazy. I’m thinking of you and your wife and hope that things will settle down for you
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My scan story is similar to Lily's but without the resolution at the end. I had three very small lung nodules that were too small to biopsy: 4mm, and 2 at 1mm. We scanned them again after chemo and only the biggest one came up, at 3mm this time. Scanned again after radiation and now the radiation fibrosis is obscuring them so who knows. So far I can still breathe, so I just try not to think about it.
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Hapa, this stuff will drive you crazy. When I had my brain scan they found a lesion and couldn't rule out metastasis, which they said was unlikely but theoretically possible. I had another scan 6 months later and no changes found so good nees I guess. But hey, what about the lesion in my brain, no explanation for that, just don't worry about it. My OC said the unfortunate thing with all these tests is we find stuff that is due to age and aren't necessarily bad, that makes me feel better.
Hapa, decided to let it go like you. I just move forward, stay aware of changes but don't let it make me crazy, I'm already there.
.Headed to 3rd surgery tomorrow to tweak my reconstruction, I’m hoping this is the last. I’m so close to the finish line, 2 more H&P infusions left.
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MACTAZ - good luck with your reconstruction revision. I had one about a month ago and feel so much better now! I didn't get a brain scan, but I did have a head and neck MRI about seven years ago that showed a very small tumor in my pituitary. Doc at the time told me not to worry about it. It's never been checked again. I'm perfectly happy to just stick my head in the sand with these things since there's really no better option.
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Hi Suburbs
A PET/CT scan is the best way to see if there is any cancer left in your body. You are given an IV with a radioactive dye in it and after a 45 minute rest period to allow the dye to circulate through out your body you have a Scan done much like an MRI but quieter of about 15 minutes from head to toe. Any thing that is cancer, will light up like a Christmas Tree. One thing we found out at after my last scan is that scar tissue is known to pick up bits of the radioactive dye also. It takes a couple of days to get the results back.
I will find the article that explained about scar tissue and PET scans and post it here
Angelsgal
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MACTAZ, thanks so much for your warm words, we really appreciate that.
hapa: since your nodules are so small, they should not be a problem. Do not worry about it.
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Thanks hapa and lilych,
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Kimm - Thanks for heads-up on Nortriptilyne (sp?) for cervical pain. Will remember that if I need it during chemo.
Lily, Mac, hapa, Angels - Thanks for sharing your scan experiences. Never a fun issue, from what I gather. My NN calls it “Scanxiety.” I can see why! 😬🥴
My MO made it back to work this week and said I’m all good on the lung nodules. I’m not going to press the issue; I’m not terrified anymore and want to stay that way.
Happy 4th of July to everyone in the US!
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Hello everyone, just got diagnosed with triple positive today. Not sure what to expect?
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Hi Jkeet!
((Hugs)) Sorry you had to join our club.
Your particular treatment plan may vary depending on:
1) the size of your tumor;
2) whether or not any nodes are cancerous;
3) what country you live in; and
4) your doctors' preferences.
Most breast cancer patients with triple positive get surgery, chemo + targeted therapy (e.g., Herceptin and/or Perjeta), and a year of targeted therapy by itself (without chemo). Many also end up doing radiation. Some go on to take a medication after targeted therapy called Nerlynx (pills). All are prescribed hormonal therapy (a pill), though some find the side-effects debilitating.
I found it easiest just to take things one step at a time. I did chemo first (large tumor), then surgery, then began hormonal therapy during radiation and my year of targeted therapy. I'm still doing hormonal therapy. It is definitely a marathon and not a sprint, but most of us make it.
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Jkeet - it's a club none of us choose to join but welcome. Treatment for TP cancer is long but with the development of herceptin, our chances of reoccurrence have gone way down. I suggest you go to your profile and fill in each space and make it public so people close to your diagnosis can give you more specific direction. Because my tumor was small, I was able to have a lumpectomy and brachytherapy radiation - done right after surgery because the isotopes are placed in the surgical cavity rather than radiating from "outside." I went twice a day but only for five days. The type of surgery recommended will also determine whether you get radiation.
My biggest piece of advice - keep asking questions here and from your team - until you are comfortable with the plan. Once that's in place, most of us experience a decrease in anxiety. It's a lot to take in but try to breathe. And keep coming here.
Bheg - I can't even find a port scar now. Hopefully you can say the same soon.
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Jkeet, sorry you are here but know you have a group of people in this forum with a wealth of knowledge that can help you ask the right questions to your medical team. It is a long journey but we are here for you. Mine started 10 months ago and almost 1 year to the day I will have my last infusion. I had neoadjunct therapy first (chemo- taxotere and carboplatin for 6 infusions every three weeks along with herceptin and Perjeta), surgery, than 11 additional infusions of herceptin and Perjeta. I'm also n hormone therapy for at least 5 years. The good news was I got a PCR or pathological complete response meaning no remaining cancer cells. So while it is a tough journey there is light at the end of the tunnel. Thinking of you.
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Hi ladies,
Been a few months since I have posted. I needed a break from everything. My anxiety is going crazy.
I had my exchange surgery a year ago. Had 2 more fat grafting, love the results.
Since stopping chemo I've lost 40# my MO was really worried about my sudden weight loss since I am not trying to lose weight. So went through a few tests, all came back normal. Then we started worrying about my bruising so easy. I am very anemic but can't take Iron pills as I throw up when I do. So have to figure that out. On to the next thing.... I cough all the time after eating, drinking ect.. dry mouth and horrible taste in my mouth. Had a Salivary gland scan. A battery of blood work, throat scan, upper GI scope. And finally we think we MAY have an answer. I have 1 or possibly 3 different Autoimmune disorders/diseases. I see a Rheumatologist, An ENT, and A neurologist in a couple weeks. Ugh will this ever stop.
I admit I have not read through all the past posts, but I do think of you ladies often. Hope everyone is doing good.
Happy 4th of July🧨🎆
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Oh shelabela. I'm so sorry to read that you have had further health issues. I hope you do find the answer, and that your doctors can treat your symptoms so that you can function at your best. And Happy 4th to you too (and all of you triple positive ladies)!
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Hi Elaine, are most people able to work? Or are the side effects too bad?
Thanks, Julia
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Julia,
Personally, I worked through chemo, radiation, and targeted therapy. I also went back to work the day after my lumpectomy (for a half-day). But, everyone is different. It may depend on how your body responds to chemo. Also, you may need more time off from work if you choose a mastectomy and reconstruction (can require multiple surgeries in some cases).
Once you know your plan, you can talk to your supervisors at work about how you plan to fit treatment into your work schedule. I asked my supervisor to reduce some of my responsibilities during chemo, which he supported. Also, I was able to reduce my hours on campus. I was in the office two days a week (Tuesdays and Thursdays). I did my chemo on Wednesday, and worked at home on Mondays and Fridays. That worked for me because the chemo side-effects would hit on Friday, and I could work in bed (and close to a bathroom -- diarrhea!) with a laptop.
It helps if your employer offers short-term disability. Now is the time to figure out what your employer offers in that regard. You could use it for chemo or save it for surgery/post-surgery. Also, don't forget FMLA. If you've been at your employer for more than a year, and your employer has more than 50 employees, you can take 12 work weeks of unpaid leave to recover from a serious illness. ((Hugs))
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Hi Jkeet,
As others have said, I’m sorry that you’ve had to join this club, but I’ve found these forums extremely helpful & supportive.
As far as working goes, I had chemo on every 3rd Wednesday. I’d take off Thursday & Friday because I was so exhausted. Otherwise, I was working. Now that doesn’t mean I was very productive but I was there. I signed up for intermittent FMLA to protect my job & use sick leave for that time missed from work.
I just finished 6 rounds of chemo on June 26 & I’m still exhausted. Everyone responds differently to chemo, so you just don’t know how you’ll feel.
Thinking of you and everyone going through this, sending prayers for few side effects & a safe 4th of July.
Shelabela: sorry to hear that you’re having other health issues. This journey wreaks havoc on our bodies & it sucks. Sending you hugs...
Angie
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Hi, haven’t posted in awhile but finished 12 weeks of T+H at the end of April, with cold capping that kept 60-70% of my hair. I’m now on balance of year of H, and although I was treated in the US I’m assigned in Europe and have returned and started SQ herceptin. Coming to a theatre near you in the US soon! There is no question I think given the cost of infusion bays and the ease that it will become the norm if possible with most patients.
I thought this group might want some quick views/considerations on it:
1. Speed. Shot takes 5-7 mins max. Wow!
2. Experience. This is not a flu jab. The needle has been to be placed sub q and the nurse pushes the contents for a little while. The push time feels fine. The insertion and removal of the needle are the nasty bit. It stings both ways and you really feel it. The good news is it’s pretty fast. Grit your teeth and remember it’s done fast overall.
3. Bloodwork. With H alone I don’t get bloodwork every time but when you do, you are still using your port or getting a draw at some of your H visits. So a needle plus port access or 2nd stick.
4. Port care. If you keep the port for any instance where maybe you might be away from an SQ herceptin facility (ie while it still gets rolled out in the US or for me, when I travel back), you need to keep it and have it flushed anyway.
5. Effectiveness. All the studies I’ve discussed with multiple MO’s have no concern with non-inferiority or with switching back and forth from SQ to intravenous as needed - helpful for travelers or someone who moves etc while SQ is not standard in the US.
6. Side effects. The biggest SE I had from stand-alone infused H was nausea, which surprised everyone as I was fine through T+H - but I got anti nausea then and the first H alone I got nothing and was ill. Subsequent infused H with Kytril I was fine. And now, SQ H - no anti nausea meds needed at all! No bump or residual pain at the injection site (thighs). Still the runny and bit bloody nose I’ve gotten used to though. Better than T+H but not gone now if ever til H is finished.
As for the rest, hair has started to bounce back and I’ve followed the no heat/products etc post chemo as directed, but can set it on rollers like Mad Men and the chemo curl effect holds the look for days. I use powder root cover to soften the grays hair color used to keep from my view. I also had reconstruction end of May and given everything I’m pretty happy with the results at this stage. So much better than TE’s!
Hope that helps anyone looking for SQ H info as it rolls out in the US or for post cold cap etc experiences.
Hang in there - summer bonus tip - at least for me, mosquitoes either avoid me completely or the idiot ones who even try literally die mid bite - so chemo and/or H must be doing something! I was always a mosquito magnet and my husband is the popular one for the first time in 28 years. Big price to pay, but small victories have meant a lot as have humorous moments amidst the chaos!
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Hi to all,
Love the mosquito side effect!
Shellabella, good to hear from you, sorry you are having all these strange issues. Thanks for the good wishes for the holidays. Hope your inmuno problems are not too concerning and that you are coping well with it all.
jkeet, welcome to our support little family.
I worked through neo adjuvant chemo, and took a month off for surgery -mastectomy + axillary node dissection. I am glad I did because I needed the time for physical therapy and for exercising to gain mobility.
Best
LaughingGull
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I’m curious how many of you have shortcut your profile diagnosis so it isn’t so long. I’ve looked all over where it could add an abbreviated version but can’t find a way to do this.
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mactaz: my history was becoming too long so I made it shorter by keeping public only the diagnosis and entering a summary of my treatments in the signature
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My wife had the last HP infusion this morning. It has been a (long) year and I am so glad it is over.
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Yay, LilyCh/husband! Yep, it's definitely a long schlepp. Triple positive ain't a picnic.
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So happy for you and your wife LilyCh!!!!
Thank you LaughingGull, I will see if I can figure it out. Mine is getting to long
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Hi Everyone, I'm new and am Triple positive. Did the chemo and will finish Herceptin in Sept. I tried two AIs but the side effects were completely unmanageable for me. I have fibromyalgia and arthritis, besides cancer, so adding all this additional load of joint and muscle pain just overwhelmed me. I think I am going to just stop everything after the Herceptin.
I am 62 and want to have quality life from here. The AI will take that away from me. I feel so confused about this. I don't want the cancer to return, but I also want to stay mobile
Thanks!
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Hi, what is AI? I am new as well, haven’t even seen an oncologist yet, just diagnosed as triple positive. Also, does everyone get a Nuelesta shot after chemo? Thanks.
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Welcome, Tinaziller! We're so sorry you find yourself here, but we're glad you've joined our community, and hope you find the support and guidance you need here!
The Mods
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Jkeet—aromatase inhibitors are what’s given to post-menopausal women with hormone receptor positive tumors to stop the production of estrogen. (Tamoxifen is given to pre-menopausal women.) I never needed Neulasta and have often advised women to really push the protein while in chemo. My blood levels stayed good throughout.
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Hi,
I am joining this group, unfortunately. Dx June 19th, port insertion July 23rd and chemo starting on the 24th. Learning so much from these forums. One thing I’ve noticed is that ILC triple positive isn’t that common.
My CT scan came back yesterday and was all good except my right ovary was over double in size. So, since it was late in the day on Friday I don’t know what they are going to do about that but I assume an ultrasound will be ordered. I was planning to go meet my new grandson next week in California but realizing now that may not happen
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Tinaziller, I understand how you feel, am 62 and am also considering discontinuing AI, been on it now for 4 months. I have arthritis, osteoporosis and neuralgia from the chemo. I had my latest bone scan and even after being on Fosomax for a year had mixed results, but bottom line was I continued to lose bone in my spine. The SE’s weren’t bad at first but the longer I’m on it the worse it gets. The emotional ups and downs, depression, hot flashes and constant pain and stiffness is at the point where I’m questioning the risk benefits versus my quality of life. It’s been a tough year, I’m trying not to complain as I understand we have all gone through hell, but I’m at my wits end and just want this over with.
My next OC visit is in August right before my last H&P infusion and I’m going to ask if I can take some time off of AI to see if the worst SE are from the drug or from other issues, then make a decision. I assume he will want me to try other drugs but they all seem to have same SE or something worse.
I feel bad for complaining, I’ve always been a strong individual and never shared my feelings with anyone, just toughed it out, but this has impacted me more than anything in my life. I know you all understand and appreciate this forum as a place I can express my feelings without being judged. Thanks to all on this site for support.
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