TRIPLE POSITIVE GROUP
Comments
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I'm went flat, thinking about tatoo breasts. - nothing this exotic
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@Angelsgal, thank you for sharing your experience with 8 rounds of Kadcyla. Much appreciated!
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Angelsgal here with a new development. Have any of you started suffering with depression. Over the past 6 mos. I
have noticed I just want to sleep all the time, or watch TV when I get home from work. Feel disconnected from people
even though I get together with them for coffee every Saturday morning. Feelings of inferiority. No real interest in activities
I used to enjoy. Lots of started projects, that I have lost interest in. Will be talking about it with my Dr on Thurs. when
I get test results back.
What do you all think. I dread just going on another pill.
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Angelsgal - if your depression is mild you can try exercise and see if that helps. Do you live in a northern climate? It could also be seasonal and getting outside in the sun every day may also help. And talking to a therapist or social worker at your cancer center might help, or finding a local breast cancer survivors group - you may have a lot of stuff bottled up that needs to be released. I understand not wanting another pill. It does sound like your depression is relatively mild right now. If the doc offers you a prescription, I'd take it and get it filled even if you don't want to take them right now. If depression worsens, you may not be able to muster the energy to even go to the pharmacy so having the pills on hand is a good idea.
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AngelsGal I agree with all that Haha said. Depression can suddenly spiral out of control and then we are in that helpless place. Go see your Dr and get a script if offered to be there if you need it. I've been on antidepressants for years and there came a day....I was helpless and had to be admitted to get the right one. Sending (((hugs)))
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angelsgal - if you are still on Tamoxifen it would seem as though your depression symptoms coincide with the start of it - and this is documented side effect. Is there a reason your oncologist chose Tamoxifen rather than an AI - are you post-menopausal?
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Hapa, SpecialK, and Nanette,
Thanks for the advice. I see my Oncologist this thursday Feb 7, and will mention the depression. I have heard that it can be triggered by the insomnia, which I have never suffered from before. I am even taking 20mlg time release Melatonin.
I stopped the Tamoxifen due to severe leg, foot and thigh cramps in August and began Aromasin which has been a much better choice.
Angelsgal
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Hi Everyone,
AngelsGal - I have severe depression. have tried several anti-depressants, (either racing heart or the overdose Nyquil feeling) and even therapy. (I posted somewhere about my crazy therapy sessions.. I'll have to dig that one up) I don't want to do anything. I applaud that you go to work.. There is no way I could. I was told I would have crazy highs and lows when taking Arimidex - I'm still waiting for the 'Highs" Hope you find relief.0 -
Angelsgal,
Aromasin gave me some mood swings -- I hear ya about not wanting to take another pill, but Celexa really did the trick for me. My MO says I'll be on Aromasin for 6 more years (just finished year 4). If I'm going to be on this pill that long, I'd rather be even-tempered than Ms. Moody for the duration. ((Hugs))
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Angelsgal - I'm on anastrozole and the insomnia is definitely the worst SE for me. I have also started on 20mg of melatonin. I also started just last night with some "sleep hygiene" - basically no screentime after dinner, caffeine only in the morning (if at all), exercise daily at least 4 hours before bedtime, get up the same time every day. I got a rare good nights sleep last night and am feeling pretty good today, I'm certainly more irritable on days when I don't get much sleep. I hope the insomnia is a temporary side effect and we can go back to normal eventually. I'm only about 1.5 months into a 5 year course and it's going to be a long 5 years if I'm not sleeping!
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Hapa,
That's great! I have been (before cancer) the person who hits the pillow and am out for the night. Never had trouble sleeping. This is a whole new thing for me and it makes me very distressed when I have to go to work in the morning.
I had a good nights sleep last night too! we are having unusually rainy weather here in So California and it was raining last night and I think it helped me be relaxed and sleep normally. I usually have to get up 2 3-4 times a night to pee and then its hard to fall back to sleep.
I actually woke up feeling rested and not groggy.
Angelsgal
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Just a note about something that helped me sleep during chemo- a little nibble of indica cannabis gummy was just the thing. No benadryl or ativan hangover. Anglesgal your thoughts/ practice of a system are most helpful.
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Hello All. The moderators directed me to this Group.
I am posting on behalf of my mother (78) who just got diagnosed with IDC in her left breast. Her tumour is around 1.8 cm. Her biopsy markers show she is ER 8/8, PR 8/8, ki67 10 to 15% and Her2 positive. I was unable to find a very clear treatment path for triple positive cancers. I would appreciate if anyone can share their experience or guidance.
She is scheduled for a PET CT next week and then a mastectomy. They have not done a biopsy of the lymph nodes as she has had enlarged nodes for several years - pre cancer. The oncologist will decide the treatment after they analyse the tumor post surgery and they are sure about the lymph nodes (during surgery they will test sentinel nodes)
Reading some of the posts it seems in some cases neoadjuvant chemotherapy is prescribed. But in her case the suggestion is to do the surgery first. This has created some confusion in our minds.
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I'd done enough reading on BCO that I knew what my MO would recommend before I met her. Typical treatment for triple positive Stage 1 less than 2 cm is weekly Taxol and Herceptin for 12 weeks followed by Herceptin every three weeks for the balance of a year. I had a lumpectomy so had radiation after chemo. I believe neoadjuvant chemo is more often for larger or higher stage tumors.
You can see a lot of people's diagnoses here:
https://community.breastcancer.org/forum/69/topics/788735?page=346
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Hi ladies,
It's been a while since I've been on here, but I noticed there's been a lot of recent talk about Nerlynx (neratinib). I'm not highly ER+ (40%), but I opted to take Nerlynx because it's the only tx that I've taken that passes the blood/brain barrier. I began taking it June 1st and within the first two weeks I ended up with cellulitis that went septic. I was hospitalized for 7 days because it was really bad - 4 out of my 4 blood cultures came back positive. I was then on self-administered IV antibiotics for 3 weeks after. I started to feel better over the summer, but mid-October, I got cellulitis again. Thankfully this one didn't go septic, but I was in the hospital for four days. I never recovered from that one before I got it again in November and was on daily infusions of IV antibiotics for over 3 weeks again. My infectious disease doctor thought it would be a good idea at that point to put me on suppression therapy (doxycycline) to prevent another recurrence. Unfortunately, it didn't and I had another bout with cellulitis 3 weeks ago which again went septic. I'm currently self-administering IV antibiotics until next week. Sadly, my onc and I decided to stop taking Nerlynx because we believe it's contributing to the bouts of cellulitis. I won't know for sure for a while if that's the case, and while I'm grateful to have been able to take it for 7 months, I really wish I could have taken it for the full year.
I am part of a FB group for women who are taking Nerlynx and recurrent infections seem to be a common theme, although I don' believe a majority of the women taking it have an issue with anything but fatigue and the big D. I guess I'm sharing because if you decide to try Nerlynx, pay attention to signs of infection. I would always get severely fatigued and nauseous (worse than chemo) about 10 days prior to each infection. I actually predicted my last one at a dr's appt with my onc. I told her I felt like I was getting another infection about a week prior to me heading to the ER.
Wishing you all a healthy 2019!
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jovial - whether to do chemo or surgery first is dependent on a number of factors. The majority of Her2+ patients had surgery first until about five years ago and the advent of the use of Perjeta for those with tumors over 2cm. The FDA approved the addition of Perjeta with chemo and Herceptin for those early stage patients with larger tumors but the drug could only be given prior to surgery as data was still being collected on its efficacy. This drive the change to chemo prior to surgery, and Perjeta has now also been approved for continued use after surgery more recently. Because your mom’s tumor appears to be under 2cm she would appear to be stage 1, pending lymph node status, and eligible for the regimen Ingerp described above - Taxol and Herceptin. Taxol is single agent in this use and is thought to be well tolerated while still providing effectiveness. Here arelinks to some info:
https://www.ncbi.nlm.nih.gov/pubmed/25564897/
http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.511
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I have a code word with my girlfriends when I am feeling the mood swings and insecurities begin. I call it getting the silly's and they are good at making me laugh and not take the overwhelming feelings seriously. It is like those wacko thoughts you get when you have PMS...and you are either mad about everything or crying about everything.
It isnt all the time thankfully.
Angelsgal
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Re depression/mood swings: I was prescribed low dose Effexor 37.5 mg to help with hot flashes caused by Arimidex.
And I *think* it may be helping with my moods as well. At least, I am feeling fairly good in terms of mental health and energy.
I also take melatonin and Ativan at bedtime, and am having some of the best sleep of my life!
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Hi Jovial - thanks for helping your Mom out but we hope she will join us too. Probably Inger's suggested treatment plan will be right but I'm guessing it will depend on the lymph nodes too. I was finished with surgery and radiation before the path report even came back with the HER2+ result. It was Taxol and Herceptin for me but my tumor was smaller than Mom's. I was 70 when I was diagnosed. I know my MO took both my age and my general health into account before she made her final suggestion about a treatment plan. I have a friend in her early 80's who had a lumpectomy but refused both chemo and radiation but is taking AI's as am I. The waiting and not being clear on what comes next is very hard for most of us.
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I did want to add that my dad had two rounds of Taxol, once at 82 and again 6 months later at 83, and he tolerated it well. When I was having my Herceptin only infusions there was a lovely lady in her late 70’s receiving a multi-agent regimen after lumpectomy. She did fantastic, tolerated it well, and was exceptionally cheerful despite having fallen and broken her hip when she was out to breakfast shortly after surgery - just a freak accident. She had surgery for the hip, short stay in rehab, then on to chemo. Age does not always determine how well we do and our docs should regard us as individuals and exercise due diligence in assessment of the factors that may cause issues during treatment. I have been on this site long enough to see young and fit patients struggle and older ones do just fine. While a patient’s age should always be considered in treatment decision making it is definitely not a universal negative.
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JovialDB
Glad you found us. Sorry for the reason. Best wishes for your Mother.
Please have genetic testing for you.
Vicky
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A friend just sent me this:
http://newsroom.ucla.edu/releases/dennis-slamon-sjoberg-prize-pioneering-cancer-research?
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Game changing innovations!!!
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For those suffering from depression, just wanted to throw out there that Trintellix is another option...its a new antidepressant with a different mechanism of action than effexor,lexapro,.or celexa, but still safe to take with Tamoxifen. Total game changer for me...
On the Nerlynx front...my MO said "no way". Said the drug is a disaster and she wont give it to anyone. For what it is worth.
Hugs!
Pamela
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ingerp - made your link live:
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Thanks SpecialK!!
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Hello ladies, we are relocating to the Colleyville/ Southlake, TX area. Can any of yourecommend an Oncologist in the DFW area? I knew an oncologist as a client who referred me to my present one. I don’t know where to start. I’ve read some not so good or nice ones are out there, lol. Any personal reference is appreciated!
😊💕💐
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Also, I’m not up to date on reading here, so forgive me if this is being discussed already. I took my first anastrozole pill last week and ended up in the emergency room. I had chest tightness, trouble breathing, abnormal EKG, burning itch back of throat and elevated blood pressure 151/107(my norm is 110/65. Anyone else have or hear of this? Nurse practitioner seems frustrated I’m so sensitive to everything. If anyone does have knowledge of this does taking the brand Arimidex have a chance to have a different response? I’m waiting to meet with my MO about the next step.
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I am reading trying to catch up after being unable to the last few weeks. I had my last Herceptin mid Dec. in January all my blood work and test looked normal but I felt a tiny spot that hurt between my implant and skin. I had surgery a couple weeks ago and they removed it and another an inch away. Both tiny, both positive not clean margins at skin side. Feb 18th they are removing more skin, the implants and then radiation. I also had a reaction to the anastrozole as mentioned previously. Very disappointing.... any info is appreciated.
On a funny note, I was reading Laughing Gull, Shelabela, Big peaches referencing runny noses. My husband cannot quit telling this story, so funny. We were in Columbus at this very nice shopping area that has a Tiffany’s. It was December and I wanted to look at the pretty jewelry. The place was kind of stark, quiet and beautiful all at the same time. I walk over to the display case as the lovely woman approached to see if she could help me. I looked down and as we all were trying to find a piece to look at........yes, my nose dripped, big as life, all over her spotless glass counter!!!
The woman was so gracious, I began apologizing, searching for my tissue and babbling about Herceptin side effect. She didn’t even blink, grabbed some towels and window cleaner, acted like it never happened! So funny, not our runny noses, just where mine decided to drip. 😊
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Hi Everyone,
Homemade salsa - I wish my state had legal cannabis, but it will probably be one of the very last. When I take it (ok illegally) it helps me sleep, relax, allows me to stretch and exercise. Its wonderful. But illegally, you never know what your going to get. Soxfan75 - I have had Sepsis 3 times (Hospitalized each time) since Oct 1st. Its horrific. I live alone, and am so anxious that its going to return. None of my Doctors can figure out why I keep getting it - they all agree its probably because of my "crappy Immune System".
My MO wants me to start Nerlynx, and he said there is no way it would cause Sepsis. (He's the one that told me before chemo that I wouldn't have any Side Effects. He's an idiot) On the website of Nerlynx - it states it may cause infections and UTI's. I have a few months before I have to make the decision. But if there is a Slight chance of sepsis returning, I'll pass/Magari- thx for the Effexor = hot flashes info. My MO prescribed that to me last year and its still sitting on my shelf. I just didn't want to take a chance of Side Effects. (either my heart races or I feel like I've taken a bottle of Nyquil when I take anti-depressants) But waking up every night drenched in sweat and having to change clothes and sheets is getting old. Maybe I will dust off that bottle and give it a try.
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