Lumpectomy Lounge....let's talk!
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Peggy & All --- You look like you are having a wonderful time. Kudos ladies.
Michelle --- Awesome sewing job. Looks awesome.
Everyone have a wonderful and save week.
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This is my "periodic pop-in" to say hi! I've been away and so busy with my mom and her transition to an independent living facility (health continues to slowly decline)... and well, just "life" in general, but I try to read posts now and then to keep caught up with everyone. The group photo from the gathering at Peggy's is fantastic - what a lovely bunch of ladies!
Welcome to the new gals on here - you've found the best board.
Since my uneventful Zometa infusion, I've been carrying on and back to a 'normal' life, pretty much forgetting that I ever had BC (it's so great to be able to say that!). Like Peggy, I've really had no issues with Arimidex either - I've been on it since April, the week before I began radiation. I had a resurgence in hot flashes for about three months after starting the drug and occasional achy hands and feet upon waking in the morning - lasting only until I'd get downstairs to put on the coffee, but that has also subsided for the most part. Being busy with my mom's health issues during my treatment helped (helps) to keep the focus off myself which, in a strange way, was and still is incredibly beneficial to a life moving forward. It is true, those of us without any issues aren't posting on these boards for the most part, but I hope my relatively easy go of things encourages newly diagnosed folks to realize that not everyone has horrible side effects with radiation or drug treatment. (Chemo is a whole different category and something I did not experience, so I can't speak to that, but I can see some have had significant challenges and I keep you in my thoughts as you go through treatment.)
Thinking about you all and sending warm, positive thoughts your way.
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Peggy, that is so wonderful! Everyone felt understood and appreciated from the start, I surmise.
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ndgrrl -
I'm taking generic also. I had GERD when menopause began, so I have assumed it was caused by the drop in estrogen rather than the fillers in the pills. Maybe not?
The nurse practitioner who is my primary care provider says the half-life of it is something like 52 hours. (Can't remember exact number.) It was hours not weeks, which doesn't explain why these symptoms are still here. Then again, I do not have any training in medicine, so maybe it does.
I'm only slightly better. Just a teeny tiny bit. Maybe it's just that the sun finally came out and it's cheering.
Today I will be getting in touch with the medical oncologist who prescribed the meds and reporting on all the testing I've had. Also asking for referral to heartburn clinic. & seeing what he wants me to do next. Meanwhile, working on my thinking and feeling by trying out a grief support group. (Lost of loss this summer in our life.)
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Grazy-so nice to hear from you and glad that life is returning to your "new normal". Sorry to hear yourmom is declining, but happy you are feeling better and able to focus on her. One of our common themes in getting together is how grateful we are for good prognosis, good outcomes and the support we enjoy from each other! Maybe we need to plan our next reunion in Canada! Don't be a stranger...
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Hey Katz! One of these days, I'll be down there and can hopefully join up with some of you, somewhere. I should be living at our place in Boston with my husband now that our younger daughter has flown the coop for university, but I'm staying put here to deal with my mom for the foreseeable future, at least through the holidays. (My husband flies home on weekends, so it's not that I've totally abandoned him!!) It was great to see you in that group photo
We'll all be forever grateful for the support of this group of women when we all needed it, and I think it's wonderful how friendships form that carry on long past treatment.0 -
This is an excerpt from an article about how expectations can either help or hinder side effects from hormone therapy. I want to wear my rose colored glasses, because it seems like they will help. "Our results show that expectations constitute a clinically relevant factor that influences the long-term outcome of hormone therapy," said Yvonne Nestoriuc, Doctor at the University Medical Centre in Hamburg, Germany, who led the study. "Expectations can be modified so as to decrease the burden of long-term side-effects and optimize adherence to preventive anti-cancer treatments in breast cancer survivors.""Higher negative expectations, formed by patients before the start of their adjuvant therapy, seem to have a pronounced influence on long-term tolerability, especially once they are confirmed by initially high side-effects after three months," she added.
The researchers are now doing a study looking at whether strategies to improve women's expectations of side effects, such as counseling, can be effective.
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What a lovely group of women!
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nice to see you Grazy!~0 -
Nice to hear from you again Grazy! You message is just what we all want... a return to a new normal where either BC, tx, or SEs don't play a major part in our day! Hope this time with your mom is special and you're able to treasure the time focused on her.
Peggy, just love the picture. Some have pics in their profile, but it is wonderful to see all of you together. What a great weekend you all must have had.
Hope all are doing well.
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Grazy, glad you popped in! AND that you are doing well. I think those who are wary of AIs for whatever reason need to know that everyone does NOT have SEs with them. Some of us do just fine. And nice that you have no issues with the Zometa. Life after BC can be very good.
Dara, Molly, Michelle, Elizabeth and Trish, We did have a wonderful time. I have found the BCO get togethers really satisfy the soul. To be with people who "get it" and are just great people anyway, is so good. I'm sorry it wasn't longer. Conversation was warm and lively, wine and goodies were...GOOD! The restaurant kicked us out since they wanted to close. I appreciate that everyone made the effort to come to the middle of nowhere. I didn't think this road trip would happen so I'm so delighted it did!
HUGS!!!
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Peggy, I'm so jealous! Y'all look like you're having a grand old time. Maybe I can arrange to come out there some day (a girl can dream.)
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Poodles, I would love that! I think Katspjays said it was about 4-1/2 hours from Seattle. Maybe next time you visit your sister it will work out for you to come here.
We did have a good time. Lots of laughs and happiness flowing along with the wine!
HUGS!
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It's SO nice to re-connect with you gals! I need to check in a little more often xo
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Hi everyone... had a great time at the get together... found out my onco score today... it's 24... right down the middle.. I'm beginning to feel like the poster child for average.. lol but chemo is out, so waiting to hear when i will start rads... and get this over with...
Peggy, Linda, Sloan, Moondust, and Katzpjays, loved meeting all of you.. we need to do it again
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Judy, It WAS fun and nice to meet you in person (you're so far away - 10 minutes!)! I'm glad you don't have to do chemo. Did your MO say why? That's good.
HUGS!
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Hi Ladies - I posted the following in my chemo group as well, but wanted your opinions too...
Had my 2nd infusion on Thursday, 9/29...this time I didn't drink a gallon and half of water (only did around 3 liters), took salt pills my MO prescribed, and ate lots of salty foods that day. By 3pm, I was still feeling ok...which was a HUGE improvement compared to #1 - as the SEs of the blasted Hyponatremia started at around 3pm. By 6pm I was still feeling good - so went to my daughter's cheer practice (I am a volunteer coach for her community league). Got home at 8:30pm feeling ok, but could tell something was wonky...so decided to take a compazine, thinking it might be the nauseau starting to set in. By 9pm - I took the rest of my nightly meds, as I felt my heart/pulse starting to increase and thought maybe my BP pill would help. I checked and my normal pulse of 57 had jumped to 91, and my BP was higher than norm. I took a salt pill -and thought I started to feel better and my pulse dropped to 77...which while still high for me, is considered normal-ish. I started to fall asleep and within minutes I was awoke with the horrible SE of Hyponatremia starting again...chest tightening, arms and legs tingling, losing support in my legs, and my head felt like someone could pop it with a pin. I told my hubby I think it was happening again - and off we went to ER AGAIN (after finding someone to come stay with my 12 year old who was trying to go to bed, but now was worried about me again). At least this time, as I told her, I could walk on my own and still talk in complete sentences. Got to ER around 10pm and same usual (and expensive) tests start again...chest CT, blood work, etc. While I was still doing 'ok' - the chest tightening/pulse thing kept coming and going...driving me nuts. Sure enough - blood work came back and my sodium was at 125. Thankfully not as bad as #1 (when it was 117), but bad enough that they needed to admit me AGAIN. This time though - I was only in hospital for a day+, and not 2 1/2 days like before. Got out just in time to get my neulasta shot (but because I was in hospital wasn't able to take my clariton in advance).
On day 5 now (day 2 of my period - oh joy) of 2nd infusion. Feeling ok - just having major depressing and anxiety everytime I look in mirror or feel head. Plus - my scalp HURTS! Had my DH cut off the long layers that were left on Saturday, after losing a TON in the shower...which was overall day 18. Only where I still had some longish hair did my scalp hurt bad...but not where it was already super short. weird. By the way, has anyone had a synthetic wig cut - or just the human hair? I am debating getting another one I got trimmed up - as it is finally closer to color, but I am not thrilled with how it is so poofy. My head still hurts - but only in certain areas...almost like when you wear your hair up too long and when you let it down it hurts just in that area.
Not really having too many other SEs, but then again...I am not sure if I have yet to know what the true chemo SEs are...since I have this blasted rare Hyponatremia! I talked with my MO on Friday -and he said I did everything right this time. It will keep happening. At that time - he gave me the option of just 'struggling through it and just going to the ER each time' or deciding if I want to stop or change up the chemo regimen to something different. Not great options. I am trying to get a 2nd consult as there HAS to be something that someone has done/tried to manage the hyponatremia SEs!? Crazy. However, he did actually call me today (big surprise there - but I think word got back to him that I am looking around for another MO) and offered me to stop doing just the Cytoxin (as that is the only chemo that has Hyponatremia as a SE) but keep doing the A stuff. He said because I have done 2, I 'probably have gotten enough' of it in me...and since I am doing 12 weeks of the Taxol, I can opt to not do the Cytoxen anymore. So basically the options suck either way - if I stop doing the Cytoxin for the remaining 2 treatments... I will always wonder and IF it comes back - I will wonder/blame myself if it was due to not doing the 2 more Cytoxens. But if I continue doing the AC - I will continue having these horrible sodium things that can lead to seizure, coma or death. Luckily we caught it early this time. I asked the MO if he could set up a room at the hospital to treat me for sodium the next time, so I could bypass the ER (and copays) and go right to the treatment...but he apparently isn't able to do that. Useless. So trying to get a 2nd opinion -and contemplate if I struggle through 2 more or stop the Cytoxin part of it.
Thoughts?
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Tbalding - are you still in Farmington Hills? That is super close to me! I used to work there!
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My RO, an expert in bc treatments from Wash U, said as long as you are under 30 on Oncotype, have general good health, he would not advise chemo. Since Oncotype is a predictive test for how well certain cancers behave under chemo treatment, it is not a set in concrete standard. Every doctor will have a different opinion on this topic, especially if they are older and hesitant to not recommend chemo. Some doctors think over 10 is the new intermediate range, even though the reason for 10 being used in the Tailorx studies had more to do with caution on behalf of the participants.
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I have my sim appt. on Thursday...
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Judy, All right!
HUGS!
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KDTheatre, good heavens! You sure are having a crappy time of it. So glad that you were able to catch the SEs earlier this time. I have no idea what to tell you about your chemo choices. Not easy, are they? Let us know what you decide (I think I'd get a 2nd opinion, too).
HUGS!
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The doctors who are now using >10 as “intermediate" for ODX have misinterpreted the data released thus far from TailoRx (and the cynic in me suspects they have a vested interest in prescribing chemo). The reason they released data only on women over age 70 with ODX of 0-10 has nothing to do with “caution." The researchers explained that in that cohort, the women did so well on hormone therapy alone that they felt confident declaring 0-10 is definitive for “no chemo" in postmenopausal “elderly" (>70) women. They made it clear that it doesn't mean 11-17 is now “intermediate," only that it's a much larger cohort, contains many women <70 yrs. old, and therefore they want to see how far out the DFS and OS spans can stretch. They said that 11-17 is still “low." “Intermediate" is still 18-30.
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I am looking for the White Paper that was sent to me by a onc researcher friend of mine. When I find it, I will be happy to share it with everyone. It established the reason for the number 10 as the cut off in the TailorX study
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KD, so sorry you are having this issue with the chemo. My sodium levels are marked low each time with my bloodwork, but not enough to cause the problems you've had. I'm not sure which option I would go for. It's just such a hard and personal decision to have to make. You and your family are the ones who will live with the decision. I'm sending positive thoughts your way to make the decision that's best for you!
Judy, congrats on finally being able to have the decision re chemo. The waiting is always the hardest part and then there is relief when you can finally move forward again.
Sandy, is the eye completely healed now? Hope so.
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Thanks, Dara—my eye is fine now (getting more floaters, but that’s because I can actually see them now). Last night at temple, though, I had to take off my regular glasses and use readers—only the left lens of my regular glasses has a reading correction (the right is plain with no correction whatsoever) but my left cataract is so ripe that it’s useless. So basically, with reading glasses I’m really using only the right eye. On Wednesday, it’s Bob’s turn to get his left cataract done (he did the right eye in 2008, and had the capsule lasered a year later). My left eye cataract goes b’bye Nov. 2.
My MO told me the TailoRx data as currently released is not relevant to those of us in the 11-17 range.
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Wow I don't understand half of what you ladies are talking about, you are so far ahead of me. I'm sure I'll catch up as time passes.
Had my MRI today, surgery is Friday. Just want to get on with it at this point. Then I'll figure out how to get all my results so I can actually see them.
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Leslie, you are absolutely right. Get that MRI and then your surgery. Then concentrate on the next steps. Read your Dr Love book when it arrives. The Oncotype score is often done to help everyone decide if chemo is necessary. There is some discussion about the ranges for no chemo, intermediate (the worst) and straight to chemo. I gather that it isn't done as much in Canada as here. Sometimes the pathology report you get after your surgery will tell you enough to make the determination for chemo. When you do get to the point of your next step of your treatment, keep in mind that while chemo is no fun (I'm told), it is DOABLE. My DIL had colon cancer 4 years ago (yes, she was young for it) and had chemo. She had the most positive attitude and every chemo session told those drugs to KILL CANCER!! Hopefully you won't need it. Let's get that lumpy done and you feeling good before we cross any other bridges! Be sure to keep us informed as to how you're doing. (Ask your questions, too). We do care!
HUGS!
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Hopefully a second consult will help me figure out what best to do with the Cytoxin.
While my BRCA were negative, I have an appt to do more genetic testing at the end of the month - so will be interested to see what happens with that. Although I HATE to go through the wait crap!
Elizabeth - I have one of those annoying pink bands for lymphedema. I wish it wasn't so dang pink. While it was great to get from free (most likely from that site your noted), I was thankful DH was with me for my ER visit after my hyponatremia during chemo#1, as I was not able to talk/communicate. Apparently - the folks in the ER kept going for my right arm anyway DESPITE the annoying pink bracelet! So that is scary! They just aren't used to seeing it - as once my husband pointed it out - they were all shocked and intrigued about it. lol
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That is very scary that they weren't paying attention to your warning bracelet.
HUGS!
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