TRIPLE POSITIVE GROUP
Comments
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Just checking in on everyone and hoping that you are all able to stay as protected as possible, especially those of you in treatment. I am as close to sheltered in as I can be. I did show a couple houses this week but took as many precautions as I could.
We have a new grandson waiting to be born in the next week. DIL is on high stress mode. Daughter flew in from Los Angeles last Monday deciding that is she was going to be stranded, she wanted to do it with some people she could talk too and see the new baby. Then spent the week thinking she should have stayed in LA where the weather was nice and she could hike. Then tonight was glad again she came when they announced that they have shut down the trails, etc.
Here in Indianapolis, even thought the weather has been gloomy and chilly this week, she could get out most days for a run.
I cant remember who asked me a few pages back about Cymbalta side effects, but I didn't really have any that I noticed. Getting off of it is another story. I was prepared when I did it the first time as I had been on effexor for hot flashes and it is similar.
Here's to a short quarantine for everyone, although I am not sure I really think that is going to happen.
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" morrigan - some oncologists would like their triple positive patients to leave their ports in for a period of time after last Herceptin. The rationale behind this is that if Her2+ driven recurrence happens, it generally happens in the first 2-3 years post-treatment. "
Thanks SpecialK. I knew it would stay in post H/P but, wasn't given a timeline. My hair dresser went through chemo for non hodgekins lymphoma (I think) and her port was removed about 6 months after her last treatment. I guess I figured that was normal but, seeing some of the dates here 2+ years got me wondering.
Makes sense that they might want to keep it for the 2 years.
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By His Grace,
No, I didn't have any heart problems with Herceptin. However, I was monitored closely (heart scan every three months), and you should be as well. Some women on BCO.org have had heart problems with Herceptin; in most cases, their heart function improved after they stopped taking Herceptin.
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Thanks SpecialK for the explanation on estrogen testing.
Everyone stay confined and safe. Those of you undergoing treatment, hope you get all essential treatment and dont experience delays beyond a few weeks.
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I had my port placed May 30, 2017, have it flushed every 6 weeks. It gives me no trouble, most of the time I forget its there. MO said she was ok with taking it out anytime, I guess I'm little paranoid abour removing it. Coming up on 3 yrs.
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I too was feeling superstitious about removing port following Herceptin but MO felt confident I wouldn't need it so I had it taken it out following my next mammogram after I finished treatment. It's really an individual decision. Just had year mammogram and all is well.
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SpecialK and Elaine — thank you.
Fluffqueen— here in Dallas the patient only goes in the hospital rule is different for maternity. One person may go in the hospital with mom. Must bring all own food and other needed items as cannot leave. If leaves hospital not allowed back in and no other person may take his/her place.
My hospital is extra cautious from lessons learned from the Ebola patient from a few years ago.
Hope everyone has a terrific Tuesday!
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This might be a dumb question but, when does the clock start? Is 1 year DSF post surgery? Post last chemo? Post last H/P infusion?
I'm thinking that with NeoAdjuvant Treatment, the 1 year mark would hit a year after my surgery but, wasn't sure.
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Morrigan--I'm not sure what you're asking. Do you mean disease free survival? I don't think there's a standard definition, at least in this community. There have been discussions about what "cancerversary" means, and it's definitely different things to different people. Maybe there is a medical definition? Others will weigh in but it's not something I think about.
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@Ingerp - brain's a little fuzzy this morning. I was asking about cancerversary.
I guess there's no standard or norm that's followed
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Hello all:
hope everyone is keeping well and safe with the Coronavirus none of us need this extra stress. God pray we all get through okay.
Have had an issue now with UTI and now even blood in the urine (happened two or three times) and then took a Macrobid antibiotic which seemed to help. I can't relate the UTI to anything, is it Letrozole, Kadclya or I had a MUGA scan(heart test with the marker fluids and radiation they pump into you). Back to some intimacy with my dear husband and now on hold again cause of all of this.....
do we need this??
Blood in the urine....didn't go for any further tests, Oncologist is saying see what the GP says and my GP isn't wanting to send me anywhere see what the Oncologist says.....feeling like a yoyo? do you think I should have further tests.....any experience with this ....
UTI...probably now the third time since early February.....blood only one time last week....
Cant take all this stress with the virus being out there and should I just wait and see,,,,,,any suggestions?
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morrigan - I think most count from removal of all "known" cancer, which would equate to surgery date. Keep in mind that the counting point may not have adjusted for those who received neoadjuvent chemo because it was not as commonly done. Prior to about 6-7 years ago neoadjuvent chemo was typically only done for triple negative patients, and those who needed to shrink a large tumor to achieve clear margins from skin or chest wall - so maybe 15-20% of breast cancer patients. Perjeta was approved for early stage Her2+ late in 2013 but only for those with tumors that were 2cm or greater, or for node positive patients, and only for neoadjuvent treatment with Herceptin and a taxane. This began the trend for neoadjuvent chemo for Her2+ patients in general if your tumor is greater than 2cm. The use of Perjeta is more common now - both neoadjuvently and continuing after surgery. Patients with tumors smaller than 2cm often the protocol is Taxol and Herceptin adjuvently, sometimes other regimens are used per MO philosophy.
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countca04 — Do you take much aspirin? I ask because aspirin was my pain reliever of choice. I took it every day, several times a day, for an old neck injury. Turns out I took too much and put myself in Stage 3 kidney failure. All is fine now — I quit taking aspirin and my kidney function returned to normal after a couple months. BUT — before then, in my whole life I had maybe two UTIs. Since then, I get them frequently and it usually takes two rounds of antibiotics to take care of them.
morrigan — According to my MO the “official statistics” are pegged from the date of surgery. For example, if one does not begin chemo treatment within 90 days of surgery one is not counted in any disease progression or survival statistics. Personally, I use the date I received the call telling me the biopsy’s pathology results, November 18, 2016, for my cancerversary.0 -
Special K- what is your opinion please: taking Tamoxifen post menstrual - I had a complete hysterectomy 20 years ago. I started on Arimidex, and was severely allergic to it, My MO gave me Tamoxifen, which I have not started yet.
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rljes - I am also post-menopausal, had a total hyst/oooh nine years prior to diagnosis. My MO placed me on Femara, his med of choice for triple positives. At the five year point I had the BCI (Breast Cancer Index) year done to help determine whether to continue taking an aromatase inhibitor. My result was unfortunately that I had a high risk of recurrence coupled with a low benefit from anti-hormonal medication. While on Femara I went from pre-existing osteopenia to the edge of osteoporosis so I had started on Prolia just six months into Femara. My MO asked me to stay on Femara beyond five years and I asked about switching to Tamoxifen since it is thought to build bone in post-meno women. He indicated that he preferred I stay on Femara and cited the Her2+/ER+ crosstalk with Tamoxifen and the superior performance of AI drugs. I feel that if AI drugs are not tolerable for you then Tamoxifen would be better than nothing - and I would personallytake it if I could not tolerate AIs, but it is important to be aware of the potential resistance issues. This is not to say that tesistance can't happen with any anti-hormonal therapy. Here are some links about this:
https://cancerres.aacrjournals.org/content/72/21/5625
https://journals.sagepub.com/doi/full/10.1177/1758834016665077
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SpecialK - what was your MO's reasoning on keeping you on Femara if BCI showed no benefit? Especially seeing as you had negative SEs (the osteoporosis)?
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hapa - my hyst/oooh was done when I was still pre-meo and that loss of estrogen definitely contributed to my pre-diagnosis osteopenia. I fit the physical profile for osteoporosis so I might have developed it in time anyway. I was started on Prolia almost immediately and was an exceptional responder. I regained 29%, the most of any patient of my MO. I had no side effects from Prolia and stayed on it for six years. Even though the BCI indicated low benefit, my MO felt that low was not the same as zero - we had a lengthy discussion about cost/benefit and since Prolia was working and I had relatively mild side effects from Femara it seemed reasonable to stay on it - at least for a while. I did ask for a PET scan since it was conceivable I had been receiving less protection in the first five years, and my MO agreed. I ended up staying on AIs for 7.5 years total.
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I'm blessed and grateful yesterday went well.
Did radiation early, before going to hospital for port placement. Pain not bad now unless I forget and reach over for something, but enough it kept me awake last night.
Surgical Oncologist asked if I had a preference for where he put it. I said just away from bra strap. He laughed and said "I learned that lesson a loooong time ago." He put it upper right side under collarbone a bit towards the middle.
This is the third surgery SO's done for me — an open transduodenalspinchteroplasty in 2013 for an obstructed common bile duct, laparoscopic partial mastectomy in 2017, and today's port. Second at this hospital: excellent facility and outstanding surgeon.
Last week, all elective procedures at the hospital were cancelled indefinitely. Only requests for "emergency surgery" can be submitted for scheduling. Every request now is evaluated by the hospital's full medical review board. Nineteen cases were sent to the board for today's schedule. Humbling — ten were rejected; mine was one of nine approved.
With my new power port the hospital sent me home with delicious chicken noodle soup in a bigglass jar, crackers, stainless steel tumbler, and a Diet Coke.
Thank you all for your kind words, sharing your experiences, and support.
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ByHisGrace - sounds like your hospital and surgeon are doing things right! Glad you are home with your port
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Hello my friends, AngelsGal here!
I go in for my Kadcyla treatment tomorrow. So glad that the hospital is only a block away and they screen everyone as they walk in the door for fever. I am praying that staying isolated during this next 4 months works and I don't get sick. Big blessing was being approved for temp disability in less than 24 hours. Never seen this happen so quickly.
Be encouraged everyone that this virus will eventually end and the stress and fear that so many are experiencing will be replaced by hope and peace in the meantime.
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AngieB92 — thank you.
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Thanks Special k! Much appreciated.
hapa - I think you are absolutely right about my hot flashes are partially due to my anxiety. My hot flashes seemed to be subsiding until the Corona Virus hit and I'm watching way to much news. My Hot Flashes are almost non stop now.
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rljes - ((hugs)) I know how you feel. I am trying to limit my news consumption. I'm also limiting music (I listen constantly) to jazz and classical. These are things I did during treatment when my anxiety was really bad. It sucks that gyms are closed right now because that was also a good outlet, but I did get a trail run in yesterday evening. The trail was like a rush hour freeway though, tons of people had the same idea, mostly mountain bikers but some families with kids as well. I wish my work would quit having these meetings to talk about coronavirus and how it is and isn't affecting us. There is at least one a day. It's not helping.
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rljes- that has definitely been the case with me. My hot flashes turned infrequent and much more mild and controllable the past couple months, until the past week or 2 they're suddenly intense again, hitting suddenly with full sweat and nausea. I figure it must be the stress, unless my radiation treatments are somehow contributing.
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All - I'm brand new to this site. Recommended by a friend who is on year 17 of survivorship! I was just diagnosed on Monday and am now trying to figure out what I want to do. I know with 100% certainty that I want a mastectomy. Several people I've spoken with who had the exact same diagnosis had surgery first and then chemo/targeted treatment - which is the way I'm leaning and makes the most sense to me. However my surgeon has said that "typically" with my diagnosis they recommend chemo and targeted treatment before, then surgery, then more treatment. This is making no sense to me, as his rationale for the chemo first is to "see" if the tumor shrinks and the lymph node clears. What I'm reading is that there is no guarantee that this would happen and it's just a "maybe" scenario. So I could end up having the chemo and then going into the surgery with the same scenario. My body is super healthy (with the exception of the obvious cancer!) so I feel like I could recover quickly from the surgery and THEN be better able to tolerate chemo. PLUS - and a big plus - the idea of pouring immunosupressing poison into my body with the COVID situation is pretty much at the bottom of my list of things to do. SO - I'm looking for info from people who opted for surgery first - and why. And also from people who went the chemo/targeted therapy route first and why - and how long before you had surgery and how did you do? I meet with the MO on Monday and have a Breast MRI on Wednesday, and then I'll start making some decisions. Thank you!
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Wahoomama, I felt the same as you when I was diagnosed last year, but I did do the neoadjuvant (pre-surgery) chemo. This is a standard protocol if you have a larger HER2+ tumor (as I did), or if it's close to the chest wall or skin where they want to start shrinking it right away for a better chance at clean margins. But even for smaller or medium size HER2+ cancer, there are benefits to neoadjuvant chemo. If you do chemo first and have minimal response, or some response but residual cancer is found at surgery (my case), then they know that just staying on Herceptin for a year may not be enough, and doing Kadcyla (Herceptin with emtansine chemo attached) after surgery could vastly improve your chances of disease free survival. And if you have complete response to neoadjuvant chemo, that's a good sign that an aggressive HER2+ cancer is responding well to treatment, and staying on just Herceptin after surgery will be enough.
Another factor to consider these days is getting surgery in a potentially covid-19 affected hospital. Many hospitals affected heavily by the virus are actually postponing surgeries to avoid risk.
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I did chemo before surgery, and I'm glad I did. Chemo got rid of all of my active cancer in both my breast and compromised lymph node. As a result, I was able to get a lumpectomy instead of a mastectomy which meant 1) a shorter recovery period; and 2) no reconstruction. (I have twins with severe autism, and needed to be back on my feet, pronto.) Yes, I was part of the lucky 20% who have pathological complete responses to chemo, but I'm glad to know that chemo did its job and that I responded well to it. Good luck, whatever you decide!
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Thank you! Good info to know. I'm actually more scared of chemo in the COVID-19 world than the surgery, but we'll figure it out. The hospital where I would be treated is not doing any elective surgery, but this is not considered elective, obviously!
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Thanks - I guess where I'm struggling is that I don't care about being a candidate for lumpectomy. So deciding if I'm already going to have the mastectomy, if it's worth it to do chemo before or just wait and hit it after the surgical removal.
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hi wahoomama,
I understand where your coming from as right after I was diagnosed I wanted to have surgery right away and wanted both breasts gone. However the more educated I became with regards to my diagnosis it was a no brainer to have chemo first. I feel like it’s giving me more of a fighting chance as I’ll have the needed information as to how I’ve responded and if more treatments are needed. If I opted for surgery first I loose the chance to know. With being triple positive I feel it’s been the best decision for me. I hope this helps.0
