TRIPLE POSITIVE GROUP
Comments
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efcjax - with Her2+ patients my MO says to keep the port for two years. I still have mine and had my last Herceptin in Jan of 2012. It was installed during my BMX without an external incision, so removing it will cause an always visible scar as my port is subclavian. I just get it flushed every six weeks, no biggie. I think I have also been more reluctant to remove it because I have had three skin cancers on my upper back removed by wide excision in the last eighteen months - very similar to a lumpectomy - and still dealing with recon issues - so kind of over being cut on.
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My last herceptin is in 3 weeks and I get my port removed 3 weeks after that with my stage 2 recon. I thought about keeping it, although I'm sure my MO would have strongly disagreed. He's adamant about getting back to your normal life. I decided the flushes would be really disruptive plus just going to the infusion center makes me somewhat anxious, like PTSD. If I need one down the road I guess they'll figure something out then, but until then I don't want the daily reminder.
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Good morning,
I had my port for almost 2 years. It got sluggish despite flushes so it was removed. I had bilateral mastectomies--different surgeries. I was using my "least nodes" arm for labs--but the veins were getting a bit too used. Next step for labs was my foot (:. So--almost a year to the date after my port was removed my 2nd port was placed. I am having weekly IV iron infusions, increased labs, and am SO glad to have my port back. Today I say I will never have it removed. Granted-I may change my mind. But, I LOVE my port. My arm veins love my port.
A thank you to the sweet comments after my last post. I have had 2 infusions of iron. It looks like molasses and has a sweet smell. There was a bit on my sweater and I smelled like pancakes the rest of the day after the 2nd infusion. I wish I could say I feel like super woman-but not yet. I have had 10 injections of B12 so far. Am optimistic!
I listened to a segment on Dr. Radio (yep--I am still a nerd) on cancer survivors. I loved hearing-again-we never return to what we were prior to diagnosis. We will always wonder. But-for many there are blessings. I would have vomited in my throat had someone told me that at the beginning. But, for me, it is true. I met a woman at the grocery store who told me the story of her daughter dying of cancer at a young age. She found me during another trip and gave me a necklace her daughter wore that was meaningful to her. My dear dear friend Maddie whom I met through the boards. We have never met as she is across the pond--but she is the dear one in my life. My MO who not just keeps me on the right side of dirt but added joy to my life. For each of you I am grateful. So despite my very windy road (as PBrain says), the chronic pain, and now another kink in the road--I am still here to bitch and complain and whine and snort and cry. But I am here. Oh--and haircuts! And--for some reason I still have chemo curls. My hair was-at best-wavey in humidity-but after a haircut this week-curls again! Wash and go curls. Love them!
And now--to my office.
Much love to each
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Has anyone here chosen to go to a new MO? I hate mine. He is the only person on my extended team that I do not like. I gritted my teeth through my visits with him and have grown to tolerate him. But, after watching the Ken burns cancer documentary, I realized that if I ever have to hear of a recurrence or new cancer that I do not want him to be the one delivering the news. It's like breaking up with someone - maybe there's never the perfect time to do it? I keep thinking that once I'm through my year of Herceptin it will be easier to switch.
Any thoughts?
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CassieCat,
I am so sorry! I cannot imagine going through this with out a relationship with my MO. I say change. As a long time nurse and nurse educator I tell people "if you are not happy where you are change. It is just like shopping. If you do not like Walmart go to Target". You are paying for a service that you can change. I was sent to an interventional cardiologist during my chaos with Herceptin. After 2 appointments I knew it was not going to be a viable relationship and I changed providers. I am very pleased with my new person.
This is your choice. You can interview for a new person. This is a professional relationship so you are not breaking up--you are making a change based on the best outcome for you. Your health, physical, emotional, spiritual-trumps.
Best wishes
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Hi All, Just given the diagnosis on 4/9 and looks like I may be part of your club ;0). Had 3-D mammo late Feb. Called back for additional views and US. Found this 6mm lesion by experienced radiologist who was thinking maybe a radial scar but felt bx was in order had surgical consult and he wasn't real excited either. Came back IDC, grade1, ER+, PR +, Now my IHC assay was 2+ so a FISH test was ordered . Wondering if I will be positive. Also my staining of the hormone receptors was just weak to Mod in just 25 %. No Allred score but I looked it up and I am prob about a 5 so I am very worried the hormone therapy won't work. Schedule for lumpectomy 5/15. Surgeon discussed radiation but not chemo. I wonder if I will be a candidate if HER2 + or will it depend on node involvement. Not knowing my stage is the pits!0 -
Also did any of your grades change for better or worse from biopsy path report after lumpectomy pathology came back? Another poster on aother board mentioned something about it being diferent sometimes.
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pat - if you are Her2+ and over 5mm chemo is pretty much a given. If you are node negative, and stage 1, there is the option of 12 weekly Taxol with Herceptin, then Herceptin for the balance of the year. This is a somewhat more tolerable regimen as there is not a combination of chemo drugs. Surgeons don't make the chemo or hormonal therapy decisions - but your post-operative pathology will be more informative, and yes, things do change - size, grade, etc. Tumors are not homogenous and you can have different receptor info on different parts of the same mass. It is hard to wait for more info, but common for many of us - hang in there and welcome to the thread!
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Thank You so much for the info. Will keep you posted ;0)0 -
yes, pathology can change things, second tumos same breast can be more positive with biopsy, just have to wait, if it's 30% or more herceptin diagnosis will change. Positive thoughts for healing.
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Thank You. Just a little confused : if what is 30% or more??0 -
efcjax I kept my port for 2 years. My MO says she likes for us to keep it for 2 years since that is when most recurrences happen. Had it flushed every 3 months with no problems. My treatment center will not place a new the port in the place the old one was due to increased risk of blood clots.
CassieCat no but many here have. If you don't like your MD then change. I know I have changed other doctors for various reasons…and all good decisions.
Pat my path reports remained the same but I had the FISH test from the start and very highly HER2+. They told me at the biopsy that my tumor was fast growing just based on the mammos/US so no surprise that it was HER2+ . Sometimes they don't get the correct sample from the biopsy. That's why the surgery path is more accurate.
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your hercepton receptor, if it consists of 30% make up, or more, this is what I was told by a patient who was diagnosed negative, but her 2nd biopsy came back at 30%. So they are treating her as positive receptor.
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My port was out within weeks of finishing Herceptin. It was a love/hate relationship. I would have been facing weekly flushes as my body loves to make scar tissue. I had many trips to have port studies and unblocking done during the year of Herceptin. Was unable to even go 2 weeks without a clog.
Unfortunately my veins still suck. It took 5 attempts for an IV to remove my port. Even the ultrasound assisted attempt failed. 3rd nurse was the charm, she had to be called in from elsewhere in the hospital.
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Hi everyone! Hopelessly behind here but welcome to all the newbies,hang-in-theres to those in active treatment and regards to old friends
CassieCat
I changed MO's mid treatment . It was a very tough decision because my MO was an excellent clinician , highly regarded and trained most other MO's in the area . He was actually very kind and compassionate and was the one who decided on my neo adjuvant treatment. It was not nearly as common at the time. He presided over the treatments that presumably prolonged my life.
The problem: he didn't explain anything to me and was difficult to find time for my endless questions. That was and continues to be important to me.
I felt very torn & more than a little guilty but am glad I did it.
If it is not a good fit, I recommend a switch and more switches till you find comfort and confidence.
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Jerseygirl. it is NOT a "Hercepton receptor". Hercept-'IN', is the drug they give you when you are HER2 POSITIVE....Yikes!! Please forgive me, everyone, this is just bugging me, because her posts are not concise in the explanation of what "hercepton" is....http://www.breastcancer.org/symptoms/diagnosis/her2 Hope this helps.
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Thank you for clarifying.
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Here you go, PatRN10, and welcome! http://her2support.org/community/member-stories/216-barbaras-10th-anniversary-page I hope that anyone that has any questions about her 2 will read here.
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Thanks again!. I am very nervous about my 2+ equivocal IHC and the low (25%) positives on the ER and PR. Does it make a big difference on the % or just that it is positive?0 -
Supposedly, I was equivocal by two tests, now I will have to go back through my papers to see which ones, but I think I vaguely remember it was FISH and IHC. And I thought that one of those tests could only have a yes or no answer. But due to the crazy nodes, they did decide to treat me 'as if' I was Her2neu positve for over expression. So I did get heceptin. I did have to stop for a couple of months, cause I had gotten very short of breath one day, and it was discovered my amount of blood my heart was pumping (Ejection fraction) which herceptin can affect, had fallen beyond what was advisable. I don't know too many others who are equivocal, but I came here to +++, to find out more, and stayed for the good company!
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..But lately, I have read that herceptin would be helpful for the percentage of genes that ARE over expressing, hope that helps.
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pat - you are positive enough to warrant hormonal therapy - I think most MO might question a receptor result in the single digits as far as treating as positive or negative. Some are now treating an equivocal Her2 result over 2.0 with Herceptin - much as tomboy indicated. It is thought that there may be benefit to treating equivocals of 2.0 (or 2.1) or higher, even if less than 3. Also, keep in mind that tumors are not homogenous - so another slide of your sample might come back with a higher percentage of staining for ER or PR. Your percentage is calculated by how many cells out of 100 stained for receptors - so if the slide they looked at had 25 cells out of 100 they would call that 25% - another 100 cells elsewhere on the sample might have more or less.
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Thanks again. That really puts it into perspective. You guys are so knowledgeable.
. I have always been an OB/ Nursery and now high school nurse so this is my first venture into the oncology world since I was in college.0 -
Pat,
I can relate as I am also a nurse. My clinical experiences were PEDS and Psych then went to teaching and administration. One of the first things I did after diagnosis was order the Oncology Nurses Certification Exam Study Guide! I read it in the chemo chair. My nurses--a couple were former students--would burst out laughing as most read something like People or just slept. I also started reading the Oncology journals-medical and nursing and stalked every oncology site. I took a journal article to my MO on my 2nd appointment. For me, really delving into the evidence-based practice helped me cope. I didn't cope well-still don't--but it helped.
Cancer has made me a better nurse and nurse educator. I so admire oncology nurses.
~susan
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Hey Lago,
I know you started chemo with Osteopenia ... wondering how that has gone for you? I just had a bone scan and I've lost so much bone over the last couple years I am now osteopenic in hips and lower spine! Despite weight bearing exercise and diet! YIKES! And my hips and lower spine have been hurting something fierce lately. (This does not run in my family at all.)
It is so strange. I used to always think mets. Now it is the LAST thing I assume.... anyway, are you on anything for it? Let me know!
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PatRN, I hope you get clarification on the comment above
runningcell and knmtwins, I found your comments on Herceptin and changes in bowel conditions interesting because I've been dealing with differences since chemo started and there are still issues now that I'm just on Herceptin. Painful diarrhea during full chemo, now just kind of sluggish and increases in fiber, etc. really makes little difference. This week I had a colonoscopy and for the first time ( I've had 5 or so before this ) the prep didn't work! The GI dr. found a polyp but couldn't snare it. I have to go through the whole thing again with an amped up prep. I blame Herceptin. My MO had given approval as long as the colonoscopy was in the week before my next infusion. I'm so afraid I won't get 'clean' results the next time. Has anyone else had this experience?
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Oops....I see you got explanations, PatRN ! A lot of posts just jumped onto my page!
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Fiona - one of the onc nurses recommended I start a probiotic once I was on Herceptin only - you might try that. It really helped me. Sorry about the need for a repeat colonoscopy - eeeks!
tonlee - Hi!!! Good to see you! Just in case lago doesn't respond while you are here checking I believe that she is on Prolia, and I am as well. I had a hyst/ooph nine years prior to breast cancer and was osteopenic, but stable, prior to treatment. I had a DEXA 6 months after finishing chemo and starting Femara and I had lost enough that I was almost osteoporotic at every measurement. I started bi-annual Prolia injections and have regained normal density. I think lago just started and has had one injection so far. Hopefully she will see your post and confirm this info.
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Pat they say when it comes to hormone positive you can't be a little bit pregnant. I'm 30% ER and aa5% PR. I'm almost 5 years out. It is not unusual if you are HER2+ and hormone negative to be low hormone negative.
Hi Tonlee! Yes I was diagnosed with osteoporosis (spine) almost 2 years ago. I'm just over the boarder. Fosamax gave me Gerd. Reclast needs to be infused and they won't do it in my foot. Don't want to risk the at risk arm so I demanded Prolia. BTW Reclast would be my choice if they would infuse my foot. If I remember correctly the last study said it does help prevent bone mets.
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Thanks SpecialK and Lago...gonna talk to Dr about the infusions....I like that much better than pills.
So, pain? Did either of you have pain?
I'm having a lot of spine and hip pain....it comes and goes...but recently it has come and stayed.
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