March 2011 chemo-lounge
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So....good news! We think.
I went for the biopsy today. The doc could not replicate or find the same place that the first ultrasound had seen, so he said in good conscience he could not go fishing around for something he couldnt see.
He recommended that I get a ct scan with contrast. Called my doctor's appointment and an hour later I was having that. Got the results back and nothing jumped out. There is a mildly enlarged thyroid nodule that they are going to ultrasound specifically and watch. There is also a small spot of some kind on a vertebrae that they are pretty certain is a hemangioma, but are also going to watch that.
So, I hope to know more on Thursday after the ultrasound but the supraclavicular node seems to be clear. That was my biggest worry.
Thanks for all the good wishes. I was a mess yesterday. Couldn't even wrap presents or focus. Sleep didn't happen. I may have taken ten years off my life in stress. Stilts, I am so glad the xeloda is working for you.
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fluffqueen, glad that things appear to be looking up. I can understand having no ability to focus due to overwhelming worry about test results. Hopefully you have some breathing room now.
It is hard to believe that seven years ago this coming Saturday will mark the day I found the lump that went on to be diagnosed stage iv from the get go. I continue to be stable. This summer, I started walking on a regular basis, and have lost twenty pounds. The arimidex causes constant aches in my feel and joints and I have learned to live above the perpetual discomfort and just walk. I didnt even know I could lose that much weight, but I'd steadily gained since the dx. It feels good and it feels right to be walking routinely.
I mentioned earlier in the year, dh and I had a huge garage sale this spring. Getting rid of stuff we no longer had use for freed us up to have a really good summer doing stuff we wanted to do imstead of looking at old accumulated things like ten speed bicycles that we were sad we didnt enjoy any more. And it turns out that getting rid of junk has a way of helping people lose weight. I read a book about it, and ended up feeling less encumbered by stuff and feel more motivated to stay active.
The stage iv sucks, and I wish it didn't have to happen to me. Still, I manage to make the best of things while acknowledging that life changed and it'll never return to the carefree place I once was.
However, it could be worse. Out of the blue, a lovely woman not quite 50 years old in our small town had a brain anyureism burst earlier this month and is hospitalized in a coma. She isn't just anyone. She is a popular, attractive woman who seemed healthy and fit, has many friends........ everyone in town knows and loves for her sunny, quirky disposition, beautiful kids and comical, good natured husband; she is fun-loving, a fabulous photographer, someone who doesn't take herself too seriously. There is not a person in town who doesn't love her. And there she is, out of the blue, at a point where perhaps her life will never return to normal, with a path forward much more difficult than what I have gone through. It weighs on my heart and soul and I know life is unfair. It is very sobering.
I will sign off wishing all of you have a good holiday, a good Christmas, good times, good moments with family and friend and best wishes for the new year.
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Divine....so nice to hear from you and so so glad that things are maintaining for you and Stilts. Those are things I hold on to that if something changes, there are treatments to hold things at bay. Congrats on that weight loss. I just started taking it again. Not looking forward to joint pain again, but I scared myself into submission.
We have purged this year too. Putting our house up for sale in January, and thinking of becoming urban dwellers for a couple of years. It is very freeing. I looked at stuff I kept that I thought for sure the kids would want to keep and just said..it's gotta go and it did!
From a certified control freak, fear of the unknown is the worst for me. I also had a friend who just had a brain bleed. She is slowly getting better, but you never know.
Seven years ago this month, I had my first biopsy that showed lcis tissue. Doc told me to take a pill. If my nurse practitioner friend hadnt stepped in and hauled me to a breast specialist who spent two more biopsies determinedly finding what we needed to find, I would not be here today I am sure.
So I am grateful for every day...and for every person in my life...and for you all, who still continue to be the place I can unload fears.
For the lounge, I am putting on one of my favorite songs sung by Harry Connick Jr....When My Heart finds Christmas. I love the melody and the message.
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Fluff...Happy to hear the good news! Hope u can relax now and fully enjoy the holidays! Take care
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Wow ladies. I have not been here in a while. Sad to hear of the scare Fluff but glad things are looking up. Divine the weight loss and 7 years feeling OK is awesome! I too have purged. After my divorce we sold the big mc mansion and now I have a 1000 SF little house that I love. Perfect for me and my son and low maintenance. I have been busy decorating and I am currently making a dining room table and corner bench for my dining nook. I have become a DIY queen! Can't wait to have it finished!
Life is good. Dating a great guy - we have been together 5 months now. I adore him and he's a sweetheart...also divorced with an 8 year old daughter. I just got back from 6 days in the sun in FL with my bestie. She's also a single mom....we needed it! My other bestie got dx with stage 3 BC - lobular a while back. her entire breast was cancer and she had 4 positive nodes. She had a BMX right after thanksgiving and is up for 3rd of 8 chemo's this week. It sucks....my heart is breaking for her. Her husband just finished chemo for a rare cancer right when she got dx. Their son is 11 and good friends with my son. They live in Chicago so I try to go back and visit when I can. Was there twice since her dx. Hope to go back next month. She shaved her head on xmas day. It's just not right. I hate cancer!!! Any prayers for my friend appreciated.
Love to read updates when I come back on here...I rarely come here though which is a good thing, right?? Love to all!
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Hello ladies, I am glad to see life is going well for all. Even though some of us have been touched by BC a second time. I don't check in often but I thought I would update you ladies. I too am a member of the second time around BC club. I had a 3D mammogram on March 6th but I didn't get the message to come back for a follow-up appointment until April 3rd, some how my letter got lost in the mail and they never contacted my primary doctor. Fortunately I had put my email address down so they sent me an email telling me to come back in. On April 18th I finally went back for the follow-up the mass was still there, it was less than a cm. The radiologist was sure it wasn't cancer. He said it didn't have the characteristics of a cancerous mass. At any rate they ordered a biopsy, it came back positive for cancer...stage 1A grade 3 triple negative. Fortunately the mass was less than a cm.
On May 22 I had a sentinel node with 2 lymph nodes removed...the cancer had not spread outside of the breast and the nodes were cancer free. I had a mastectomy on the right breast with immediate reconstruction. Tomorrow I am scheduled to have a port put in. Not sure when I will start chemo, but it's coming. 4 rounds every two weeks of Adriamycin (affectionally known as Red Devil) and Cytoxan. Then the second part of treatment will be Taxol once a week for twelve weeks.
Well that's where I am. What gets me is we try to live our lives without thinking about bc so often. I felt good because I had gone 7.5 years with clear mammograms. Then here comes bc in the other breast...YUCK, but Like we say, we've been through a lot in the last seven years and that have made us strong, so I can handle this too.
I am putting on my boxing gloves and getting ready to fight like a girl.
((((hugs))) to all.
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DeeDee...well another one of us in the “second time around” Club...sounds like your chemo plan is what I had in 2011. Take good care of yourself and check in so we know how you are doing. My second time around is with triple neg with bone Mets...I have been on Xeloda the past 2 years and so far stable...hope it stays this way for many more ! Sending positive thoughts your way
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DeeDee, sorry to hear you are having a second go-round with bc. Hope you are healing from the mastectomy and reconstruction. I wish you all the best with the upcoming chemo. Plz let us know how things go as you move forward.
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Thanks ladies for the well wishes. Friday I got a call from my MO. I start chemo this coming Wednesday. I am ready to get these treatments started so my life can get back to normal. Stilts did you have a lot of SE the first time around?
Devine, I am healing from the mastectomy/reconstruction. I got my port put in Monday, it's a little sore but healing nicely.
I'll keep everyone posted on how treatments are going.
Thinking of you all!
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DeeDee: Will be thinking of you as you start your chemo...AC is not a lot of fun but the SE can definitely be managed and weekly Taxol was a walk in the park in comparison (at least for me). I did struggle with staying hydrated with the 4 ACs...a Rn suggested I come in the next day for a liter of fluid...helped immensely !!! My appetite was all over the place ...I remember hitting an "appetite recovery day" when I was shopping at Costco and almost bought the store out...all those samples really tasted good! Take care of yourself...you can do it !...big hugs!
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OMG! My first treatment was something I had never felt before. I was sooooo exhausted for 3 days and somewhat nauseated but I made it through. By Sunday afternoon I was finally able to sit in the family room with dh. He has been my rock through my first treatment. Treatment #2 is this coming Wednesday. I am hope I am going to be a little better prepared for the SE. As of today my hair isn't sheading yet but I am sure by the next I'm on the site I will have lost most or all of it.
Hugs ladies!
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Dee Dee...hang in there...side effects get easier to manage with each cycle !
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Hi all! It's been a very long time. Dee Dee, hope you are tolerating the chemo okay... Glad your dh is there for you every step of the way - that's priceless! I can't recall if this ever came up on our thread. After Taxotere in mid-2011, my hair on top of my head never came back, so while I have it on the sides, I need to wear a "topper" wig. (It's not thin - it's really not there...) My eyebrows are maybe 1/3 of what they used to be if that. I'm planning to get them tattooed in Sept in hopes that that will be one less thing to worry about daily. While I've been dealing with this for years, I'm frustrated with buying wigs, still using Rogaine, etc. (Also three of my 20 nails - I lost them all on Taxotere - continue to be wonky and lift and hurt and fall off, etc.) I'm considering joining the Taxotere lawsuit in hopes I'd end up with some payment that would cover these costs which will continue as long as I continue. I've poo poo'd it because I don't consider myself someone who sues. Any thoughts from anyone here are welcome. I want to emphasize that I'm absolutely grateful that I'm NED right now. I do appreciate that it's only because I'm not actively dealing with cancer that I have time to fret over this relatively little stuff. I definitely count my blessings (fingers crossed). Chime in if you have thoughts. Thanks in advance.
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Silla, I'm sorry to learn of the hair loss. The view you have of yourself as “I don't consider myself someone who sues." needs reconsidered. Perhaps you may find that before bc, you didn't understand why people sued companies or other people. That may be because up till then, there hadn't been an event in your life that required such action. That's maybe no longer the case, and it may require altering the view you have of yourself. You might think, “oh, gosh, now I get it."
We all experience these type of insights about ourselves from time to time. I used to judge some people who collected disability, and now I am on it. In fact, I found myself floating along in the local pool last week telling a former co-worker I was on disability. Sure didn't look disabled in that pool, did I?! Yet two doctors determined that I was due to mbc. So I realize I may have judged others without understanding or seeing the whole story.
Its okay to change your mind about a long term belief you once had. What have you to lose if you join a class action suit? You could pursue it to see what happens, and one way or the other, it will be a learning experience. It also can be your own private matter, no need to discuss it with anyone you don't want to. I had to get legal help with my disability claim and only my husband and I knew about it,
One last thing, plz don't minimize the effect hair loss has on you. Yes, maybe its cosmetic in some respects, but in others, its affecting your every day life. . Its okay to honor yourself and place importance on who you are and what you are dealing with. It sounds odd to say that joining in on a lawsuit is a form of self care, but I feel there is truth to it.
Thats my take on the sitch!
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Hi Divine! I tried to start this yesterday from my phone but Autocorrect was a nightmare so I abandoned that response. I really appreciate your helpful challenge to my mindset. It's funny because I don't have issues with people being on disability (and I definitely get your comment about not looking disabled in some cases). If I'd been in a car accident, for example (God forbid), I'd sue because it would likely be necessary. Which doesn't mean I can't be judgmental - ha! I'm thinking it's about discounting my hair loss as you mentioned. "It's not cancer - I should shut up and be happy..." I also suspect that my onc may have a reaction to my doing it. When my hair didn't grow back when everyone else's did, he said "you had thinner hair to start". That's true - it wasn't thick BUT I didn't need a hairpiece. Made me think they took notes for this type of future issue. I truly love my onc so I don't have an issue with him but, as I'm mulling it over, that may contribute to my hesitation. I just filled out an online form and am supposed to hear back from someone so we'll see... Sounds like you're having a lovely summer and grabbing pool time. That's awesome! Thanks again and be well.
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Silia, let us know how things work out as you look into this. Best wishes, either way!
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Hi ladies! I have not been on here in a long time. Just catching up. DeeDee I am so sorry you are having to go through this again. I am glad it was caught early and hopeful that will be good in keeping it gone! Since I was last on here one of my best friends was diagnosed with stage 3 BC - lobular. It's been hard to watch her go through all of this....on top of it all her husband is terminal with a rare pancreatic cancer. Their son is 11. I have gone back to Chicago to help her several times as she is exhausted and just finished chemo, rads and started tamoxifen. I have my onc check up this week - I hate going! Still get nervous every time! Another friend just recurred after 5 years clear...this time she is stage IV triple negative. My heart is heavy with all my friends are going through.
As far as the hair not returning....I have a few friends that had the same thing happen with taxotere. I had taxotere but if you remember I used cold caps to save my hair on my head. I can tell you my eye lashes never came back thick and beautiful as they once were and the hair on legs and under arms is much more sparse which is OK. I don't want to imagine what would have happened to the hair on my head if I did not use cold caps. I don't think it is bad to join the lawsuit. It's not that women have no hair and it's about vanity...it's about the fact the pharmaceutical company is under reporting the incidents of permanent hair loss and doctors are not informing patients that hair may not come back. I know of three women that had this happen and it has been devastating for them. Women should be presented with ALL options. They can refuse taxotere and get taxol. They can use cold caps to prevent hair loss and permanent hair loss. There are choices but women are not being given the choices and all the correct information. Its not right and that is what this lawsuit is about. Just my 50 cents.....
Life is busy here. My son is now 12! Crazy. He's knee deep in travel baseball which keeps me busy. My boyfriend and I have been together a whole year as of next week. Hard to believe....never thought I would find a boyfriend after cancer and divorce.
Hang in there ladies! Hugs to all!
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Hello ladies,
I hope all is well with each one of you. Like I mentioned earlier I had 4 rounds of AC, which was brutal. It was doable but it was ROUGH. I kept getting dehydrated and stayed nauseated and fatigued. In fact, I was almost ready to throw in the towel after the second treatment because I was so sick from the SE, but by the grace of my God I made it through. I finished my last round of taxol on November 14th it was MUCH easier than the AC. I had my port removed and my reconstruction surgery on December 19th. I haven't been for my follow up appointment with my plastic surgeon yet, I go next week, but I feel I am healing okay. My MO said I was cancer free and I'm back to seeing him once every three months.
Maria, congrats on making it one year with your new man ;-)
Just wanted to check-in and thank you all for the well wishes.
(((hugs)))
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Hi Ladies,
I have been on the Starting February board, it I am actually starting Acx4; Tx12 on March 6th, then surgery. Scared.
Lauren
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Deedee-that sucks that you had to go through this again. I know I drive my doctors crazy with every little lump and bump but I think the more vigilant we are the more likely anything is caught early so props to you for catching it before it got out of hand.
Lauren- I don't see your diagnosis but this board is people that started chemo in 2011, so it isn't real active. You might look for a 2019 board if you are new to this but this community was a godsend to me when I was diagnosed. Keep the faith. I can't speak for ac, but taxol is very manageable. Hugs to you
To everyone else...well it's that time...8 years...knock on wood....I hope everyone is living life to the fullest
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Greetings to all who still check in to the forum and this thread. Yes, eight years since we all joined forces in the March 2011 chemo lounge. The good news for me, diagnosed stage iv from the start, is I had 8 years of stability. The bad news is that a bone scan this month showed a new bone met to the spine. I am off the Arimidex and now taking Aromasin with Ibrance added next week. Not sure how many of you follow breast cancer treatments, but Ibrance was not available when we were 1st diagnosed. It was fast tracked for FDA approval when phase 3 of the trial in 2015 exceeded expectations and became available in 2017. There are some women who began it in 2015 still doing well.
The news of progression popped my balloon of denial....yes, there I was believing I might have beat it. I am slowly coming to terms with the reality check. It is a bit scary. Brings back all those horrible feelings from 8 years ago. Hopefully things go well once I'm on the new treatment,
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Checking in : Wow those eight years sure flew by !!! Divine- sorry to hear your news...I remember my feelings too well when I was told I had bone mets. I'm managing pretty well in the world of Stage 4. I have been on Xeloda almost 3 years with no progression. I got a 2nd opinion from Mayo...ONC thinks my most recent bone marrow biopsy may not be correct as it changed from highly ER/PR positive to Triple Negative....it is what it is !!! Many happy times in the last 8 years...my older daughter got married/younger daughter graduating from Law School and 2 new beautiful granddaughters! I have cut back at work ( a big plus because I did it because I was ready- not because of BC) which gives me more time for travel, volunteer work (Breast Cancer mentor) and just enjoying life !!!!
Hope to hear from more of you 2011 lounge ladies !
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DeeDee I hope you are hanging in there. Saying prayers for you.
Divine I’m so sorry you had progression. I hate BC! I hope the new drugs are working will for you with minimal side effects. Prayers to you too.
Stilts I have a friend that also changed from Er/or positive to triple negative. She’s on xeloda too. The side effects have been hard for her but it’s been helping. She had spots in bones and liver. Liver spots shrinking enough they may be able to do rads. She is having good results in bones too. I just got the life of me can’t understand how it changes to triple negative from hormone positive. Cancer is so sneaky!!!
No real updates here. Still seeing the same guy. My son is now 12 1/2 and single parenting is really hard. Unfortunately he’s a handful and I’m stressed most of the time. Taking it one day at a time...
I hope the rest of you ladies are well
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Hi everyone! Here's to be in the game of life another year. I still and will always, I am sure, struggle with living beyond. My most recent thing is finding a lump in my right side. I just went in today to meet with my oncologist. It is hard to feel but she things she found it. We are going to start with an ultrasound to see if anything shows up. To me, it is the first time I ever felt something that felt exactly what they say it feels like...a small hard pea. I'm hoping that it is what she thinks, something superficial on the top of the implant. But in my BC journey, it is when they tell me not to worry that it is something bad.
So we will see....
On the positive side, had a great year in real estate, just got back from Florida, and in another 10 days will be headed for Bali. Knock on wood. I may be glad I bought that trip insurance.
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Fluff: happy to see a post in our group...😊...the 27th will be 9 years since I got that phone call that changed my life! Where did all that time go? Hoping your lump turned out to be nothing and you’re off on a wonderful vacation!
I am still fighting the Stage 4 beast! Was hopeful that a new treatment for Triple Neg (Abraxane +Tecentriq) would give me some stability but instead resulted in new problems. New diagnosis of diabetes possibly auto immune response...will wind up with an insulin pump! Having a hard time keeping positive through all this!
Taking one day at a time
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Hello to all. Yes, Stilts, we are 9+ years since getting our diagnoses! I found a lump on December 22, 2010 which is the date I use for when I began living with metastatic breast cancer.
Last March I had my first progression and tried Ibrance—a CDK inhibitor— along with Aromasin. A four month scan showed more progression, so I left Ibrance and went on to Verzenio. It’s been a rough drug for me the past six months, more challenging than iv chemo. The drug lowers red blood cell count and leaves me with shortness of breath, lightheadedness, nausea and fatigue. Later this month I have an onc appt and will request a different treatment. I will get scans soon to see of the Verzenio helped at all, but it’s affected my QOL and doesn’t seem worth it.
I hate to sound all gloom and doom. I make the best of things. I shed a lot of obligatory family stuff in the past year and am happy about that. Dh really helps out around the house and we’ve had a relaxing winter. We just ordered new Lazyboy chairs; looking forward to getting them. I indulge in reading—looking forward to Jessica Simpson’s new autobiography Open Book, as well as a bit of binge-watching shows like Marvelous Mrs. Maisel.
Fluffqueen, I hope you got an all clear with the ultrasound and enjoyed your time in Bali.
Stilts, it’s true, sometimes it’s hard to stay positive. Perhaps you will start feeling better with the insulin pump. I hope so.
I must have had you ladies on my mind. I called the onc’s office the other day and said, “I have an appointment for a zometa iv in the chemo lounge.” It cracked me up when I heard myself say it and I thought of ya’ll.
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Stilts and Divine-prayers and positive energy coming your way that one of the drugs helps.
The ultrasound and a mammogram following showed what they believe is fat necrosis from the fat grafting I had done. No one seems worried so I am going to go with the flow. Oncologist says we will check again next year just to make sure there are no changes. I go on Medicare in December so I am trying to hold things down as much as possible this year.
But next year, I'm due to a colonoscopy, bone density, etc. It will be a haul out all the tests year
Divine-we moved and downsized 8 months ago. I purged a huge amount of stuff. Would send a picture and ask if anyone thought they would potentially want it. If not, it was gone. It was pretty freeing. I am going to do more this spring. I have a tiger eye oak dresser and chest of my grand parents and a couple of mahogany side tables that were another grandparents. I honestly have never loved then and wanted to paint them, but everyone would be horrified, especially my mom. So I didn't. She passed away at 92 14 months ago. They did make the move with us, but I think I am finally to the point that I am going to sell them. The kids don't want them, and the guilt factor is lessening.
I hope you all get some relief.
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Hello ladies!
It's been a while since any of us have posted to this site. Season's Greetings to all of my "Lounge Sisters". I hope each of you had a Happy Thanksgiving especially during this pandemic and these unprecedented times. This is the first time my sisters and our families didn't get together for Thanksgiving and it doesn't look like we will get together for Christmas either.
Things are going well with me, I am thankful that my health is good. I pray each of you are doing well. It's going on 10 years since we were first diagnosed, some of us have had 2nd and even 3rd diagnosis since then, but we are all blessed. Fluffqueen, Stilts and Divine I pray that you all received good news since you last posted here. And Maria/mdg I hope you and your man are still kicking it and having a great relationship.
I have a good friend who is a 4 x warrior, stage IV and is pushing on full speed. She is a inspiration to all of her friends and followers. She is on facebook as Coquease KoCo Powell. She have a lot of followers and inspire us all, she is always so positive. If any of you have time, check her out on FB.
I look forward to hearing from more of you on this post.
Take care and STAY SAFE (((HUGS)))
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Hi ladies
I have not been back on this site for so long, but tomorrow is 10 years since my diagnosis and I feel so lucky to still be here. So sorry that some of you have had to go through this again, and/or have continued treatment. Divine - I hope your treatment has stopped any progression, Fluff - glad they are not worried about you, DeeDee, sorry it came back but fingers crossed it gone for good now.
I never had reconstruction after the bilateral Mx, they said I had too much scar tissue - but its doesn't bother me, hell its 40 deg C here some of the time and I don't even bother wearing falsies. I finish my Arimidex this year but have not had any bone density issues. Had a couple of bouts of cellulitis in the lymphodema arm including 8 days in hospital for a pretty nasty sepsis, but otherwise felling really well.
Life has been amazing for the last 10 years, I learnt to just do stuff now and never wait for tomorrow.
Maria - keep enjoying life. They may have stopped us travelling this year but we will get back to it.
Australia has been incredibly luck with Covid, for once our remoteness was a blessing.
Keep safe everyone - all my love
Penny
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Ten Years! Can you believe it? When I hit my ten year mark, I thought about the panic I set myself into then, and the panic every time something crops up. I am a worrier for sure. Penny...for sure I have learned to live for today.
The last year was sure an interesting one, right? I received my second vaccine yesterday and am feeling like Im back on chemo today lol. Joints ache, freezing cold feet, low grade temp, tired. But hopefully it will be all better by tomorrow.
I hope everyone is still holding on to the other shoe and here's to many more decades! (knock on wood in case I just cursed myself!)
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