Starting Chemo July 2019
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good evening to all! Been a LONG weekend for sure and paying for it today. We had our 8th grade pool party for the kids on Friday night and our 8th grade formal last night. Went AMAZING! Kids had such a great time and were so excited to see and be with their friends. Had around 25 kids. I was so excited that it went so well and worked out. They did a drive though promotional ceremony, Jaymeson got Principals List, Certificates for Soccer, Basketball also received trophy for Most Improved Player, and Baseball, Betta Club, and SGA. So proud of him and we now have a freshman in high school 😐😐 Still dealing with neuropathy and swelling. They upped my gabapentin 600 mg 3 x’s a day, bloodwork, and echocardiogram. She said swelling is not normal for my age and the rest is history. Bloodwork is good and waiting to see about echocardiogram. She said if all that’s normal she would think it’s the tamoxifen. But that doesn’t sit well with me because I’ve been on that since Jan and none of this mess until now. Nothing is helping and I’m about to lose it cause it hurts so bad. Finally got hair colored 🙌🏼🙌🏼 Not as drastic as I’m used to but I like it.
Well I hope y’all have a great week!
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jjpope1- thanks for sharing the pics! They are great. It's wonderful you and your son got to celebrate!
Unfortunately we are still in phase 1 and my 8th grader wasn't able to do the dance and graduation. But the school did send out a nice powerpoint presentation to recognize the grads!
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Awe look at those kids! Your son is handsome! They are cute together! I hope you get some good news on your swelling soon that is no good. We are in Illinois phase 3 so we are able to have a bday party for my 16 year old (on tuesday) daughter. She is allowed only 9 guests, we are doing individually packaged food - including boxed cupcakes and the party is outside in the back yard so they aren't inside our house breathing on each other. Plus this will be easier with our crazy dog. I had blood work done on Thursday and was able to get my blood draw to include the COVID antibodies test. So my blood is at the Mayo clinic and I'll see if I had COVID back in Feb or not. *IF* I do have the antibodies then the rest of the family will get tested and IF they have it, then I can breath a little easier for all of us! I am back at work 3 days a week this month and then 4 days a week after that. It's weird b/c downtown Chicago is 95% empty !
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having days of hell and no relief, blood work is good, echocardiogram is good, so they think swelling and pain is coming from tamoxifen. I’ve decided I am not taking it anymore. I can’t live like this. I woke my husband up last night it was so bad. I told him I rather die than to continue with this pain. I am gonna make apt with MO tomorrow to let him know I’m done with the tamoxifen. I am going to ask if I can just have a hysterectomy. I just don’t understand how I can have been taking this since Jan and now in 2 months it does this. I am so tired of medical issues.
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Hi jjpope-
Tamoxifen kicked my rear, too! I lost over half of my hair and had nearly every side effect. I told my MO that I couldn’t continue to take it....my quality of life was close to zero. She put me on Fareston and it is wayyyyyy better. Ask your MO about it
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wheatscapes thank you for the input! Did you SE’s come all at once or were you on tamoxifen a while then they started? That’s what gets me, I’ve been on it since January and now it decides to have affects 🤬 weird in my opinion but with my body I wouldn’t expect anything different.
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That looks so painful JJ. :-( If you have maxed out your out of pocket expenses - I had just the ovaries and tubes removed - keep my uterus and the surgery was not bad at all I had it on a Wed and was back at work on Tuesday. Much less recovery than a hysterectomy. Knock on wood life on Letrozole is good.
let us know how it goes with the MO!
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MO said he wants to do a shot zoladex 1 a month or every 3 moths depending on my insurance and switch me to arimidex and take for 5 years. He said if I do hysterectomy I still have to take a pill for 5 years to deplete the estrogen. And that he's not heard of tamoxifen doing what my symptoms are. He said he wouldn’t do hysterectomy 1st because it’s such a big surgery and I wouldn’t know if I’m going to have same reactions to arimidex. Either way I would have to take a pill for 5 years. I'm over this mess and over taking all this medicine. Arimidex can cause swelling too. And he brings up my age of 41 and not in menopause.
2019whatayear asking because I don’t know why did you choose that way instead of hysterectomy, and does the letrozole deplete the estrogen?
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I got the ovaries and tubes removed b/c I was at higher risk of ovarian cancer due to my BRCA-2 status but I didn't need hysterectomy b/c I'm not at higher risk of uterine cancer- keeping the uterus meant it was just a laproscopic procedure and then I could go straight to taking Letrozole vrs Tamoxifen. Also keeping the uterus means I get to keep all my stuff like my bladder up where they belong.
"Letrozole is in a class of medications called nonsteroidal aromatase inhibitors. It works by decreasing the amount of estrogen produced by the body. This can slow or stop the growth of some types of breast cancer cells that need estrogen to grow."
You can take Tamoxifen when you are not menopausal but you can't take the Letrozole or other aromatase inhibitors unless you are post menopause. Tamox can thicken the lining of the uterus and that can lead to uterine cancer so I was like I want to skip that mess - b/4 I knew I was BRCA they wanted me to take Tamox until I went thru menopause, but with the risk of ovarian cancer to to the BRCA2 me and my MO were like- those ovaries and tubes have got to go!
I hope you are able to find something that works, for me the Letrozole gives me some peace of mind-
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It's been awhile since I've posted. Sorry to hear the treatments are causing after effects for some of us. I've been working throughout the covid - just a lot less at first, now up to 4 days a week in the office. I push through the symptoms and just keep going. Switched from Anastrozole to Letrozole then went off Letrozole for two weeks to see if my heart problems stopped. They didn't so I'm back on Letrozole. Had echocardiogram last week. No results yet but my irregular heart beat didn't happen during the echo so no surprise there. Dropping off my son at MEPS today and praying I don't have a heart attack before he leaves to Army basic training tomorrow. I miss him so much already it hurts. He had his high school graduation ceremony finally and graduated with honors. Proud mama moment. Other than his graduation I've stayed away from crowds but everyone in my office keeps traveling to Florida, ugh! Had diagnostic 3D mammogram yesterday and it came back clear. Yea! I know my thoughts are all over the place but life keeps happening while I'm still struggling to make it through the effects from cancer treatments. Wishing all of you moments of Laughter and JOY as we continue fighting our way through this. Jjpope1 i have no words. I'm so upset for you and pray they figure it out!
Love to all 💕💕💕💕
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melmax, wow a lot going on and so proud of your son! I can’t even begin to imagine how you are feeling 😢 my son has a lot of talk about the military but we still have a lil while to go. I have stopped all my meds and have neurology apt tomorrow so I’m hoping they will be able to tell me something. Just so frustrating that they can’t figure out why and help, and continue to push meds. So I have my fingers crossed that I will get answers.
I hope y’all are doing well and have a safe happy 4th.
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HAPPY CHEMOVERSARY EVERYONE!
jjpope: thank you for the photos! They all look so happy and WOW is your son handsome! I am sorry you are having so much swelling and I hope it resolves soon!
Melmax: I sure hope you get good news and a resolution of symptoms. Big (((((((hugs))))))) on missing your son.
I am having a terrible time -- maybe 6 weeks ago I suddenly developed painful neuropathy in my feet (had only had loss of sensation and balance issues before) I am still getting Kadcyla (well, I was, on hold now) Trying everything, onc NP finally told me to go to the ED this week as I was just crying and screaming and hadn't slept in I don't know how long. I was asking them to admit me so they could give me heavy enough drugs that I would just sleep for 36 hours. Ugh. They didn't do that but they sent me home with oxycodone and I did sleep for nearly 36 hours! What a relief! I feel human again, even though my feet still hurt, now I can put on shoes and socks.
I had my mammogram yesterday and it didn't hurt much at all! The tech was Sooooooooo gentle and kind.
I am liking my short hair, and have now dyed it purple
Off to work, but sending good wishes to everyone!!!!
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Jjpope1 - Love the photos, but so sorry that you are having such prolonged pain and suffering. Not fair! My gynecologist mentioned how awful some of the estrogen suppressor drugs are.
Melmax - it must be pretty scary sending a child off to the military. I hope basic is going okay for him. How is your heart holding up?
YeslamaDragon - sounds like the Kadcycla is kind of catching up with you. So sorry you’re still having to suffer with the Taxol side effects as well as the Herceptin. My hair hasn’t grown out enough yet to color, but I’m going the purple route too!
It sucks that we’re still having side effects from this mess! Of course most of us are still on one “chemotherapy” or another. I’m still getting Herceptin, but via injection rather than IV. I really hate it! And the last two times my blood pressure spiked so high that they kept taking it and taking it while it went up even higher. Finally they just said they would go ahead with the injection, but I had to take my BP at home for the next three weeks. Lovely! If they are going to give the injections anyway, just skip the BP, cause it just makes me freak out. I’ve still got neuropathy and either it’s getting worse, or it’s causing the arthritis in my hands and feet. Mornings are like walking barefoot on gravel. Sigh, sorry for the complaints. I realize I’m not in as much discomfort as many of you.
Summer feels like it’s flying, but I have been able to go swimming on the weekends with our dog (we’re right on Lake Michigan), and occasionally playing tennis with my husband when it’s not 90+ degrees.
Hope everyone improves and continues to heal, or at least has diminishing pain. Hugs and best wishes
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seems like we are all in the same boat with this pain 🤔🤔 I completely stopped all meds to include tamoxifen until I/we figured out the why in pain and swelling. EKG and kidney function normal. Swelling has gotten better and the extreme burning pain has gotten better since I stopped gabapentin. Right hand is still in pain and losing strength. Went to neurologist and he said carpal tunnel (which is what family dr suggested but I told her she was crazy cause I didn't think it would hurt that bad) after he conducted nerve test it showed carpal tunnel in both hands. Right is a 8 out of 10 in being bad and left is 4/5. So we are doing surgery on right hand. I am so sick of medicine and doctors I don't even know what to do. The one and only thing I regret in this journey is doing chemo. I swear I wish I would have never done it. And can promise you I would NEVER do it again. I just can't wrap my mind around how we can still be having problems from chemo when we've been off it for so long.
Off that horrible subject, my son just finished drivers ed 😳😳 I think we have decided on putting him in a private Christian School here (tryin to figure out how to afford it) because our school system sucks so bad and this COVID crap. They didn't teach anything the last 3 months of school, just assigned busy work and now they suggest one option is 4 days the 1st week at school then 3 weeks off and work remote from home which means no teaching and just busy work again. It's so frustrating wanting what's best for your child and ensuring they are educated. It's just a mess. Others with kids, what is your school leaning towards?
This is my hair now. It's been a long road but I am so thankful to have it mostly back to normal. Colored it the blonde my first time since I lost it. Wayyyyy to normal for me but I like it 😂😂
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you look super cute! I like the blonde.
This Friday will be the official one year since the day I was first poisoned on purpose by Medical professionals. Prior to chem I had only poisoned myself from time to time with a wee bit too much wine.
Any who, as long as that crap worked I'm happy. I would really like to be one and done on the whole cancer thing.
I have my annual gynie exam on Friday. Wow do I know how to celebrate or what? LOL
Overall things are good. I do have some possible light lung damage from the radiation so I'm assuming it would suck big time if I got COVID so I am erring on the side of being very cautious. I don't mind, I'm like happiest when I don't have to go anywhere except for a run. I'm working on writing and reading in my spare time. Also my hubs found this great desk on trash day a block over from us, so I'm going to DIY refinish it.
knock on wood, no side effects from any meds--and I wouldn't know about the lung if not for the scans my oncologist did. I have definitely learned that I have to be really careful with my left arm to avoid pain or potential lymphodema so I wear my compression sleeve and gauntlet all the time. To be honest and of course knock on wood, I quite like life post menopause. I really had too much estrogen running around my body wrecking havoc!
Next week my big project is to try and get the billing for my radiation squared away. The hospital was in network but the radiation oncology wasn't so I have a big ass out of pocket bill with them. I hope I can just pay on it for like 5 years. Otherwise....
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Hi Everyone,
Nice to hear how many of you are doing...seems some are still struggling while others are doing ok. I have been in both camps but am in the OK camp right now. I was in the hospital with radiation pneumotitis that scared the s**t out of me but after 15 days on prednisone and 20 days on a super strong antibiotic I am feeling better and the coughing has completely gone away. I went in with chest pressure and a dry cough when lying down (Covid, right?? thankfully, NO). The chest CT scan showed scarring on my lung from the radiation. The pulmonologist thinks it will go away with the meds and time but will be rescanning in a couple of months to be sure it hasn't gotten any worse. When I went in for my Kadcyla infusion my oncologist said I had to wait for three weeks since Kadcyla can irritate the lungs also. The bummer with that is that I had my end date for doing infusions and that has now been pushed back. After I'm through with infusions is when I can do my exchange surgery for my reconstruction. I am tolerating the Kadcyla well and also tolerating the AI (Letrozole) well. Exercise helps with the AI joint pain.
I can't wait for it to be all over. It's such a long road. On a side note, a friend of mine was just diagnosed with the same type of BC I had so passing on my experience to her has been a healing experience for me.
As with most people, our summer plans are on hold for now and we are just hunkering down.
Take Care and keep in touch,
Julie
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Hi all! It’s been awhile since I’ve posted, but I’m doing well. I had my port removed yesterday and won’t see my surgeon for 6 months, my “exit interview” is next week with my oncologist and then I’m done.
I went to vote a couple of weeks ago and got a nice kick in the ego, when they looked at my pre-cancer photo, compared to me now. Cancer is the world’s worst beauty treatment. 🤪
I hope everyone takes the time to post here about their follow up experiences. I think it will be helpful to learn what our doctors look for and test for reoccurrence.
Thank you again for all the support. This would have been so much harder without the support and information this group so generously shared.
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jjpope1 your hair looks fantastic! I completely empathize with wanting to be done with doctors. It’s hard because breast cancer isn’t painful, but the treatments are excruciating. I have friends that are banding together to form learning pods. They think it will be leads expensive than private schools. I’m sure you’ve already looked at all you choices though. Good luck with your healing and finding a good place for your kids. Thanks for sharing such a happy photo...made me smile!
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Hi Everyone! It's been a really long time since I've signed in to this thread. I started the chemo with everyone last year and wanted to say hi & sorry for not visiting sooner! I've been thinking about all of you lately because I'm finally to the final step of this journey. I'm getting my exchange & lift surgery Saturday August 15. I will read through the threads but if you're up to it, let me know how you are doing! ❤️
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One year ago today I had my second A/C treatment and shortly after that my hair fell out. That was the worst of all of the treatments.My hair just hurt. One year later, today is much better! I went for a run and now I have enough hair again that I can feel my hair blowing in the wind. It's all grey but its all mine! I hope everyone is having a good healthy, safe August!
xoxo
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Hi all! I haven't posted for a while either - it seems we have all been busy trying to find our new normal. I'm glad it seems you are all doing so well.
Unfortunately, I am in the middle of a horrid scare again. I found a lump in my neck and am waiting for the CT scan results. I keep thinking that I did everything they said - surgery, radiation, chemo, so it can't be the cancer but the truth is - it will be a miracle if it's not. I was supposed to be a survivor - writing threads like all of you, not waiting on results because I found something. Honestly right now I just feel like giving up. If I can't even make it three months after radiation ends, then I'm doomed. I'm quietly trying to get all my affairs in order so my husband doesn't have to worry about anything, there are so many things he will have to do that he is not used to if I die.
I had hoped for better news this year and then COVID happened and now this. I just don't have anything left in the tank. I hope you all continue to have good news and happy days as you heal from this.
debbie
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Deanders - I'm so very sorry you are going through this, again. So very scary and depressing. I hope the CT scan is negative, but if not, that whatever is found is operable/treatable. Keep hanging in there,
🤗 and 💕 and warmest 💭 !!0 -
Hey everyone - Brief check-in: Finished my year of Herceptin, and have hopefully my last fat grafting surgery and mediport removal this Thursday. MO switched mr to an AI, since I am officially now post menopausal. First couple of weeks were awesome. Then this weekend it’s like a truck hit me. My entire body is sore and bad headache. The fun never ends with cancer!
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it’s so great to hear from divergent, flnana2, yeslamadragon, deanders, shelligirl, star42, dvhmouse, and wheatscapes.
Deanders I can’t say anything other than I love you, you are in my prayers, and I’m here if you need anything at all! One day at a time is all we can do, one foot in front of the other. Please let us know when you get your results. I know you have so much on your mind and heart and I’m so sorry.
I started back on my tamoxifen and so far so good. We decided to go for a private Christian school here where we live to make sure J would be taught and not just doing online assignments. We have our interview Friday and hoping that will be the last step. I’m excited and he isn’t having any part of it right now, BUT we have to do what’s best for him. Hopefully he’ll get there and realize it’s not terrible. Still working and hanging in there. The pains in my hand neurologist said was carpal tunnel. Had surgery on my right cause it was a 8 out of a 10 being bad. Surgery wasn’t bad but not healing properly, go figure. And of course the response was cause of chemo your not healing as fast as you should 🤬🤬 after starting antibiotics it’s getting better 🙌🏼🙌🏼 Never in a million years would I think carpal tunnel could cause that much pain.
So for the ones that had radiation any tips tricks or anything you would like to share that I could pass on to a 36 yr old that I’ve just come in contact with. Radiology read her mammogram wrong and where she could have been a stage 1 it went to 3 before she could get a proper diagnosis. Took 17 nodes out 11 cancerous. She’s a EMS worker where I’m from. She’s just completed chemo and now will begin radiation and I need any advice I can get to help her in that part.
I hope everyone has a great week! 💕💕💕
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Deanders,
I hope you get a clear result from your CT scan ASAP waiting and worrying is the worst. It def could be other stuff than cancer and even if cancer it doesn't mean it is a progression of the initial cancer---but it can def. be other stuff- like a silly swollen lymph node that is swollen in response to the radiation that you had.
My MO has me on a very aggressive monitoring program so I have already had one round of scans that scared the crap out of me. The fear of it coming back is truly the most awful part of all of this. If you want to talk, message me anytime.
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Dvhmouse how are you doing ? Did you finish the chemo for HERpos. ?
JJpope switching schools stinks but starting at a new school as a high school freshman is probably the best time to do it. HS is a whole new place everyone is starting fresh.
Radiation- I got the amazon brand aquaphor and used that in the changing room each day after treatment. Drink plenty of water. I had the Deep Breath Inspiration Hold radiation - that's where you hold your breath so that the radiation is less likely to hit your heart or lung- that is only used if they are doing it on the left side. Radiation usually only takes like maybe 10 minutes a day, it's a fast in and out. I wore fun socks or cute shoes everyday to give me and the techs something to comment on. You fall into a routine super fast because it's a daily thing. It can cause hot flashes. It did that for me,but it wasn't super bad or super disruptive. It's been 6 months since I had radiation and the skin that was exposed still seems dry. I was lucky I had no burning or peeling skin at all. All in all it was very manageable and I hope to never have to do it again (that's also my thoughts on chemo).
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Deanders - Holding you in my thoughts. Hopefully you’ve received the results of your CT scan and it is just a swollen node. Even if it is a recurrence, there are many women who have recurrences pretty quickly and they soldier through treatment againand are NED for many years afterwards.
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Thinking about you today Deanders xoxo
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Just thought I would take a moment and touch base with you all. I got my scan results back and they are not favorable. It appears that I have a couple of spots on my lung and some swollen nodes in my chest as well. I have not gotten the biopsy results back from the biopsy they did on the node in my neck so I am not sure what I am dealing with - whether it is metastatic or an entirely different cancer but the MO that looked at the report said she was "95% sure" is was the breast cancer. I have so much more venting to do but I have managed to not cry for the last few hours and don't want to get myself started again.
The jist of it is that I hate the clinic I ended up with for my first treatment, I think if they would have done a better diagnostic job and listened to me better and not bounced me from one MO to the next (for a total of 3 different Drs) then I think this post would be much different. I would be complaining about meds and side effects just like the rest of you and posting cute pics of the hair that is finally growing back (but will most likely be falling out again soon). I am in the process of switching to the Seattle Cancer Care Alliance, since I only live about an hour away, and am hopeful that there are treatments that will give me a few more years of quality life. But right now I go back and forth from wanting to live a long life to wanting to just give up now. My appointment up there is on the 26th of August so hopefully I will have a plan and can focus on that. I just don't understand how I could have clear margins, only one sentinel node involved and 19 clear armpit nodes and be back at it in less than 3 months after radiation. Someone messed up somewhere.
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