Anyone starting chemo August 2016?
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Haven't been on here for a while. Hope everyone had a good Thanksgiving. I guess I've been doing really good lately so it makes me take advantage of feeling good and staying busy! I sure hope anyone who has experienced shingles is feeling better! My husband had it and I know how really painful (and dangerous) it can be! He just got it on his forehead and down one eye. I can sure scare you.
Has anyone heard from Annie? I worry when I skip checking in that I miss a message from someone. My last onco visit showed good test results with the exception of significant bone density loss due to the Letrozole. I'm trying some PT but can't do a lot until I redo my foot surgery and hip surgery. It's always something isn't it? I"m having so much fun though with pottery, family, and getting ready for the holidays though so am just taking it one day at a time.
Lyn I laughed at the silicone spatula comment. When I had my first hip replacement, I wasn't allowed to bend over but wanted to shave my legs (I was only 41 so that was still an important thing! haha!) I took a disposable razor and duct taped it to a yard stick, and voila... shaved legs! Maybe you could try the same thing with the spatula. Necessity really is the mother of invention!
Hope you can all enjoy the season! Take care, love, Dara
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Great story Dara! Lyn- you always make me laugh- thank you
I'm with you Dara- I wait and then try to remember who put what. I don't think Annie has check in for a while. I'm hoping no news is good news with most people!
Can you believe it's been 2 years already?!! I mean- when I think we were going through all the chemo crap at this point 2 years ago- it's just amazing to me. We hoped "time would fly" but now it sure feels like it! Kathie would have turned 52 on Thanksgiving....geez!
I had a dexascan? bone density this am. MO wants to move me from Tamoxifen to an AI. Of course that makes me nervous with all the talk of joint pain. I'll see the BS and then oncology NP this month. Guessing they'll want me in for another MRI come January.
I've been more dealing with the teen's health- migraines still. Trying to get her on one of the newly approved FDA drugs, but the first one we looked at would have been $600 a month out of pocket. Think we found a more reasonable one just waiting on approval. She's home today and we happen to have an appt with her counselor in a bit to see what options we have for maybe doing some schooling online.
Life Right?!!
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Just thought I'd check in with you all.
Dara, I hope that you are past your ecoli. How awful! That is such a dangerous bug. A friend of mine had it and they sent her home 3 times before realizing what she had. Hers was not easy to get rid of either.
Cali, I hope you have figured out where your pain is coming from.
AJB, My doctor is also recommending I switch to AI soon from Tamoxifen. Apparently once we hit menopause, they don't recommend Tamoxifen for more than a year. Increased risk of uterine cancer (not for me - that is gone now) and blood clots. I am really struggling to decide whether to take the AI or not. The tamoxifen has been hard on me and my joints are sore all the time now. I've switched back to a keto diet to try to help with inflammation. It does help (and has helped with the hot flashes too), but I am just sore most of the time. AI's supposedly are worse on joints, and can cause bone loss. I don't know how to weigh the benefit of AI in my situation. My stage was low, grade was high. I was aggressive with my treatment, but got a recurrence anyway. After my first diagnosis and surgery, I moved on. I am having a harder time this time. Honestly, I think it has more to do with the hysterectomy than anything. I've also switched my diet to try to help with my mood. Actually mood swings doesn't really describe it. The complete lack of hormones has left me with very little enthusiasm for anything. I feel like I'm just going through the motions. The thought of AI's for another 3 years sounds awful. However, if I went off and got another recurrence, I don't think I'd forgive myself. What is worse? The actual side effects or the chance of recurrence? Ugh!
Ok, enough of my gloom... My husband and I have a little getaway planned this coming weekend. Off to Des Moines to see Aladdin the musical. Tonight, we are going to watch our daughter's Show Choir debut (actually she is in the back-up band for the show choir.) My son will be back for break in a couple weeks. Trying to come up with a good assortment for a finals week care package.
Hope everyone is enjoying the holiday season and spending lots of time with loved ones!
Kelly
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Very creative with the super sized razor, Dara! I broke my ankle in the 80s & had a cast from knee to toes. I remember being horrified when the cast came off & I looked down at my fish belly white leg covered with long hairs. Foot AND knee surgery? UGH! I'm glad that all is going well otherwise. No, no news from Annie.
ajbclan, I'm very sorry to hear about your daughter's migraines. I've only had a few in my lifetime and can't imagine dealing with them regularly. Having to worry about the financial aspect of treatment seems like adding insult to injury. I hope the new drug does the trick. Two years...I know that you miss Kathie.
Kelly / Kechla, I'm sorry that you're having a rough time of it. It stinks to be caught between a rock and a hard spot when it comes to joint pain vs. reducing the odds of recurrence. I hope the trip to Des Moines is a nice respite.
Lyn
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Kelly/Kechla-
So I was hesitant to start Tamoxifen with the list of side effects longer than the AI's. One thing I said was hey- I had a blood clot already and my mom had a stroke (lol). My MO was like- were you ever on birth control pill? Yes...well that's a potential side effect with the clotting there and you did fine lol. I did laugh that it never even crossed my mind when I took the pill.
I have done well on the Tamoxifen so I think thats why I don't want to mess with it. She made it sound like if I had the bad joint pain, then after a few weeks (I'm hoping not longer) she'd move me back. You just get a higher % of success rate with the AI after menopause, and it has less issues than the Tamoxifen. I just feel like everyone complains more about AI's.
So I should be exercising right now....sunny, I'm out of shape- husband is off today and just went for a bike ride. Nope- just ate 2 chocolates, on the couch under a blanket and just finished watching a Real Housewives lol.
Thanks Lyn....and thanks for keeping us laughing and keeping this going.
I need a hobby- anyone playing that new craze- Pickleball? Also you know I was looking at those Dragon Boats but never have pursued..... they even have the BC teams I guess.
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Wishing all my friends a wonderful healthy holiday!! We're 2 years out ladies!!! My love to you all....Kelly
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Merry Christmas 🎄❤️🎄
Hi my friends. I responded a couple weeks ago but see I must of forgot to press submit because I don't see it. I am sure I had so much important things to say..lol
Dara ... I am glad you are getting well and moving on so well.
Kelly.... Yay for 2 years !! Life has brought so many new friends to our BC club into my life at work. These young moms seem to breeze through chemo better than I ever did. Hope you are enjoying the season with everyone home. I am sorry you have to deal with all these side effects. The up side of my Triple Negative BC is no after meds..! I still have no real answers for my pelvic pain & bloating. The last 2 doctors have sent me on ..this time back to the gynocologist to see the doctor not the PA...we shall see?
ajbclan..... I am with you on the sitting on the couch with a warm blanket and a good movie. That should burn calories too. If I do leg stretches....right ??..,,and arm stretches??
Lyn .... Hope all is well with you!
Annie ....if you ever read this we send you hugs & love along with some prayers from me.
Merry Christmas hugs 🎄❤️🎄
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Merry Christmas and Happy Holidays to all of you. Gosh, another holiday season almost over.... where does the time go? I'm looking forward (sort of, lol) to have Christmas day at my house. About 25 with 5 grandkids ages 4-12 (and only 1 girl!) A little worried as they are calling for rain, and my house isn't all that big. Setting up a spare bedroom with puzzles, legos, and art supplies. It will be fun!
Hope you all have a pain free day, and continue to move on. It's still so comforting to log in here and see your familiar names and messages. Wish we could hear from Annie, prayers going her way for sure.
A big hug to each of you! Love, Dara
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I hope everyone had a nice Christmas. Since I couldn't be with family, I find myself indifferent about the holiday. May 2019 be kind to you, my chemo pals! 💚💛💜
Lyn
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Sorry Lyn you couldn't be near family. Our Christmas was very good, with half family and half friends who didn't have family either. Happy New Year everyone! May 2019 be a good year for all of us!
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Happy New Year to y'all
Lyn I'm sorry you weren't near family. Is there no friends or others alone that you could get together? I always find folks who have no one in town to celebrate with us.
I went for my 6th month lateral mammogram on the 26th and it all came out clear. Yay!
Hugs to all
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Great news on the favorable report, Cali!
I spent Christmas Eve and Day with my best friend of more than 25 years and her family. It's just not the same as being with my own family.
I echo Dara's hopes for a good 2019!
Lyn
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I have a question ladies ... I know we discussed over the chemo life of ours ...what is considered your survivor anniversary? My friend is one year after us with her diagnosis and happened to ask her oncologist this question. He told her when she is 5 years cancer free!! Hmmm? Have you heard this.
Lyn I am so glad you weren't alone and understand how family is best
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Happy New Year Ladies!
Glad everyone seems to be off to a good start
I echo if anyone else is reading please just say Hi- we'd love to hear how everyone is doing. Annie- always thinking of you.Ok well I never actually think/talk about survivor anniversary. I guess I just can't wrap my head around that. Funny- Kathie and I used to talk about that. Those questions like "are you in remission", "you're cancer free right?". Kathie said she'd say "that's what they tell me" lol. So maybe it's a mental block for me, but I haven't used the term survivor. I just say I was diagnosed 2 years ago, or finished chemo 2 years ago or whatever. Not the answer you were looking for lol.
I started Arimedex right before Christmas, switching from Tamoxifen since I'm confirmed to be menopausal. Just like Tamoxifen, I was nervous to switch because of the unknown side effects. The MO's NP told me I didn't need claritin for joint pain (love how they think you won't experience anything lol). But I decided to just take it anyways- whats it going to hurt. So far doing ok. First day I was all emotional...crying for no reason. Popped onto the AI boards here and posted it. Gotta love the BC sisters that responded- doubt its the medicine that fast- maybe its the anxiety about taking the medicine lol. Yep probably right.
Side note- right before Christmas I decided to take my daughter to a recommended acupuncturist that wasn't covered by our insurance. 2 years ago, 2 of her Dr's recommended this woman- worked a lot with pediatrics and also adults. She wasn't covered, so we tried someone that was for Shea's headaches and it didn't do anything. The last few months have been so bad. She did take 1 dose of a newly approved medication but didn't seem to respond to that. So I felt like we needed to re-visit what we tried years ago and see if she responded now. Time to cough up $$ if needed. Well, long story short, this acupuncturist it turns out has treated 10 kids over the years like Shea. Shea had Guillain-Barre Syndrome (something for you to google lol) when she was 5. In the hospital they're given IVIG to stop the attack. This Dr has seen 10 kids like Shea that end up with chronic headaches. She looked at Shea and said I think I can help you but you'll need to be patient. I started crying lol. Shea actually walked out shocked as her headache had actually gone down. So we are hopeful!
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I'm OK with the term "survivor," but understand that it makes some people uncomfortable. For triple negative cancer, the five-year point is often perceived as important because our odds of a recurrence fall off significantly. Maybe that's why that timeframe was mentioned?
Ajbclan, oh gosh, I so hope acupuncture helps your daughter. Keep us posted!
Lyn
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I think for me, I do not want to celebrate the days I was diagnosed, so choosing to focus on the day I finished treatment seems like a better event to focus on. Honestly, I don't really talk about that much and don't use the word survivor. I think that we all attach to certain things to help us cope, so we should all speak to whatever works for each of us. My method is as much as possible to not think about it. This site is a good outlet, but I find that if I think about it too much, it makes me sad. I try my best to just move on and live life. My best intentions do not always work... I feel surrounded by cancer and am forced to think about it on a regular basis.
2018 ended badly, so I'm hoping for a better 2019. My father in law was recently diagnosed with fatty liver disease (which developed from diabetes), which quickly progressed to (non-alcoholic) cirrhosis, and even more quickly to (metastatic) cancer. He first went into the hospital in November and passed away at home on Christmas morning (surrounded by family). We lost Jim's mom to lung cancer last year. I really hate cancer. Both Jim's parents were like actual parents to me. I count myself fortunate to have found them and was able to have them in my life for so many years. Don was a charming, funny, smart, and loving person. Mary Beth was a doting grandmother and treated me like the daughter she never had. I miss them both incredibly.
On a more positive note, my mom is a 20 year survivor and my dad is finally starting to feel better a year later (he finished chemo about 1 year ago) and had a clear PET scan last month.
ABJ, please keep us up to date on your transition to AI's. I am right behind you. I am guessing at my next appt, they are going to probably let me know I need to make the switch. I hope your daughter finds relief finally!
I have a new fun project coming up. I am going to convert our downstairs bedroom into an art, craft, and sewing room. I've already got my list made for IKEA (for storage and desk space), and have about 50 projects pinned on pinterest just to organize the space. I hope to set up my easel as well so that I feel more inspired to start painting again.
My son just left again last weekend for college. It was so nice having him home for a full month. He is in the ISU orchestra this semester and will be performing at Carnegie Hall in NYC on Easter!! We are planning a trip there to see the performance. My daughter is driving for the first time in snow after a recent snowfall (equals me worrying constantly). She will be travelling with the show choir (she is in the band) to Tennessee over spring break. I am pretty sure my kids got their musical talent from their grandfather (Jim's dad). Jim and I are not musically inclined at all...
Thank you all for continuing this group. It has been a great place to feel support and I feel like I know you all personally. If anyone is ever in Iowa (lol, I know), let me know so we can go out to lunch. I'd love to meet some of you in person.
Kelly
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Kelly Kechla I love your post! I'm so used to "liking" things, I wanted to "like it" lol. It would be fun to do lunch someday..... not sure where anyone else is located....I think there's 3ish of us in Calif. I am so sorry for all your families have been going through! 2019 has to be better. I'm with you...I'm sick of "Jodie has metastatic breast cancer" commercials and that nuelesta continues to come up! Maybe I watch too much TV lol.
So has anyone watched Marie Kondo on Netflix...the new rage in cleaning/organizing?! I thought of it when you said you're re-organizing a craft room! I watched the show, she's adorable lol. I'm a horrible reader so I downloaded the audible app and listened to her first book (I think it was the first one) while I did my sporadic walking. I'm ready to try it. I don't secretly hoard but still would like less stuff. I think the biggest issue is the photos and associated papers, but she has you do that last.
My daughter made it through her first full week of school, on time. Small goals. OH but get this...her luck I tell you. She was walking at school, and felt something crawling on her arm. She thought...no I'm just imagining something underneath my long sleeve shirt. Then the stinger went in. She said she was with 2 guy friends so she said "I'll be right back" and went into the bathroom. Took her shirt off and shook it and the bee flew out! She always seems to have a decent allergic reaction so now she's on antibiotics...arm was really swollen and red. Never ending right?!!
Happy Weekend Ladies!!
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Morning ladies ... Wouldn't a coffee together be fun? Wish I could send my jet to pick you all up one day and bring you to my favorite Kuppa Joy here in Clovis for a visit...lol
We had another Pink Heals visit yesterday for a young mom Tiffany. She's doing chemo now.
Lyn...being Triple Negative too I always learn from you.
ajb....I sure hope this helps your daughter ...but the bee sting seriously did that have to happen. Poor girl. Those Neulesta commercials are funny too...my husband always shouts 21,000. dollars for that little pod. Maybe we watch too much TV too. I sure could use some organizing. I will have to check out this Marie Kondo on Netflix.
Kelly...I don't talk about it much either but it seems to find me. Your kids seem so talented. My poor kids didn't have a chance with my genes or my hubby. I am trying to help raise money for a young homeless child at one of our local high schools who has a chance to go to Carniege Hall. I'm so amazed at these talented kids. How exciting your own space. Maybe one day I will do that with one of our extra rooms.
Have a great day! Hugs, 😘
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Cali, is this a fundraiser, is this your Pink Heals group or???
Regarding Neulasta ads, I think the company heard some of the criticism because the ad that came out later in my treatment made the patient look less well than the original perky woman. To me, the bigger issue is how many suitable candidates wouldn't get the pod if the ads didn't air? If a minimal number, maybe spend those millions on research instead of marketing? My oncologist told me about Neulasta and it was mentioned at chemo class without any prodding from me. What about y'all? It's not like the ad that encourages the young woman to be more forthright with her gynecologist about endometriosis (or something similarly not relevant to an old fart like moi) or making a fellow more comfortable asking for help with ED. Those are topics patients might otherwise not mention due to embarrassment, but Neulasta? The big bucks were perhaps wasted on me anyway since I became neutropenic after 3 of my 4 AC infusions. Maybe I would have otherwise ended up in the hospital?
Annie, you remain in my thoughts.
Kechla, you've had far too much sadness. I hope 2019 is much kinder to you and yours. 😘
ajbclan, no-o-o on the bee sting. Could that young lady please catch a break? I checked out Marie Kondo's ebook from the library last year. She IS adorable. I'm always looking for stuff that inspires me to purge anything from my "serious hoarder, but without the rotting food, roaches or Elvis memorabilia" house. Still, I'm not one to greet my house or thank my stained T-shirt before discarding it. I do think her book is helpful in making one more willing to part with items that don't really enhance one's life / "spark joy." The folding techniques she demonstrates don't work as well on my ginormous granny panties as the tiny undies, tank tops and bras she typically demonstrates if you search for her on YouTube. 😄 I'm eager to kick a lot of stuff to the curb, but struggle to find the energy to get 'er done.
Lyn
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Oh my gosh Lyn you always make me laugh...thank you! I have stuff printed and my brain says we wills start Marie's way, but haven't done it yet (my house will get messier lol).
Cali- love the picture....haven't found anything like that farther south for me to join in on.
Kid finished her finals Friday....also fought a fever last week (while on antibiotics for the bee sting lol). Very interesting- I took her to the acupuncturist and they "treated" the fever. I'm starting to buy what they're selling haha. Oh- as she was doing it, and we were talking about the virus I said that I had been wiping down surfaces as my white cell, platelets, red cell are still low. She asked why and I said from chemo. She recommended some kind of herbal mushroom to boost my white cell. She wrote down the name, said her oncology patients use it, and I asked my MO. Usually my MO just says no lol, but she said she found nothing to indicate not too, so she gave me the green light. Interesting! I'll keep you posted on my mushroom experiment!
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'Shroom therapy? Groovy and far out! Seriously though, I look forward to seeing if the mushrooms improve your numbers. A lot of drugs were derived from botanicals, including some of our chemo drugs, so it's certainly worth a shot. Yes, please keep us posted.
Being sick during finals stinks. Those are stressful enough without fighting off cooties. I hope your daughter recovers quickly.
Lyn
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AJB, how are things going on the AI? So far, is it much different than Tamoxifen in terms of side effects? I have my next appointment coming up soon where I'll need to make a decision.
How long were you on Tamoxifen after menopause? How long does your Dr want you to stay on the AI?
Dara, how are you doing on your AI?
I am increasingly struggling with the side effects of the tamoxifen. While not intense, my joint pain is constant now. I nearly fell over trying to step down from the bleachers this weekend. Also, I feel like I am losing my voice. It is raspy quite often now. Wondering if that is a side effect as well. There are some articles indicating it can be.
It has been a little cold here in Iowa lately. Today it is supposed to be 40! That is 90 degrees warmer than last week!!!
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Hi all! I've been out of commission for a little while. Went in last week for foot surgery. They've now fused 4/5 toes my left foot. It was super brutal the first 48 hours, but I think I'm finally seeing the light at the end of the tunnel! I have a cast on the leg up to mid calf, and will be on a knee scooter for 2 months. I keep saying that I've already done my share for the medical profession, but nobody is listening!
Kechla, I've settled in now with the letrozole (Femara). I reacted the least to that one (far less joint pain) and my co-pay was reasonable. I know the AI caused extreme dry skin, lips, mouth, but it's manageable. The hardest thing is that I've gone back to night sweats often but just my head (weird!) so I wake up with quite interesting and crunchy hairdos! lol! And I never had night sweats when going through menopause the first time!
Pottery is still my sanity. It allows me to forget about the real world and focus of positive creativity. I designed a help to allow me to move my wheel into my spare bedroom. I shared in with a group on Facebook, and they named it a "clay-pen!" I love it.
Hope you're surviving winter no matter where you are, even So Cal is getting a bit of weather!
Here's some pics to get an idea of my life of late. (my legs are crossed, they didn't mix up right and left lol)
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Hi Ladies! Well I was given the green light on the shrooms and started them (and paid about $80 for them!) and just got a message from the MO to not use them. She had been in touch with an expert in supplements and cancer and the person said there's an article that shows these mushrooms can actually increase estrogen so she wants me to avoid that and them. So I'm no longer a guinea pig lol.
Kechla- I'm doing pretty good on them. It is always so hard to figure out what would be happening anyways as I age and I'm not exercising really like I should. I'm on the generic, and I've been on the AI boards and follow one of them. My NP said I didn't need to take claritin, but started doing it anyways- seems to be what folks do to help with the joint pain and what we did with Nuelesta so worked that into my pills. At night I get some sporadic bone pain I guess...but nothing major. More annoying and "what's that" kind of thoughts.
Dara- seriously- you've been through the wringer! Time to stop!
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Hello Ladies
I have been living in a funk the past couple weeks. Found out I'm diabetic now... I'm like WHAT the bajeebies??? Seriously I don't eat much of anything so I guess too much sugar was my problem. Who knew sugar was in SO much?? They are giving me 3 months to diet and try to get it right. After 2 weeks of eating cardboard and grass I am ready to venture out with some recipes. Haven't we all paid our due??
Lyn .... Pink Heals goes out and encourages women with breast cancer...but now we go out for men and children with other major cancers or diagnosis. When I got my surprise visit from them it was what I needed after my surgery as I was to begin radiation...it gave me the encouragement to carry on as I felt done. Now I help and join in to reach out to others.
Kechla....burrrr....where you are. I am cold enough in Cen Cal. We have had quite a winter here this year. Yay no drought this summer. But this Cali Girl has been chilly.
Dara... Hope you continue to heal well. Your hobby has been your saving grace.
Hugs 😘
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Well, [expletives deleted], Cali, the diabetes diagnosis does add insult to injury, doesn't it? Hopefully, diet and exercise will be enough to keep things under control. If not, metformin isn't too bad.
Ajbclan, so no ''shrooms for you. We see so many studies resulting in opposite conclusions that one really wonders what advice to trust.
Kechla, how goes the Tamoxifen joint pain battle?
Dara, is the foot healing up OK?
As for me, I had to help my sweet Katie pass, I'm losing one of my two part-time jobs and my blasted knee is killing me. I'll continue my job through mid-March to fulfill some commitments so hope I can get into an ortho doc soon and that a Synvisc injection will keep the knee functioning. I should have called about an appointment today, but am in a bit of a funk.
Lyn
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Lyn...how's that knee doing? Hope you got your appointment and some pain relief. Sorry about Katie and the loss of your one job. You seem to be being pelted with bad things. You are due for some joy in your life.
I am behaving myself with diet and some exercise. I have to improve in that area but with so much always going on it gets put on the back burner after working all day. Still waiting to find my energy to find me!
Hope everyone is doing well.
Hugs
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Annie, thinking of you...
Howdy, Cali,
I'm glad that you are making progress with diet and exercise. Let me know when the energy finds you! 😊
The blasted knee got better so I didn't try to get into an orthopedic doctor, then today, it was worse again. Grrrr! I'll soon be working both jobs for a little while and don't have the time or energy to futz with this stuff so the knee needs to buck up and fly straight.
When one thing after another happened during my cancer treatment, my oncologist and I would talk about the dark cloud that insisted on hovering over my head. Everyone has problems, but I admit that being knocked down every steenkin' time I dare feel at all optimistic becomes demoralizing. This month is the 30 year anniversary of the Fibromyalgia diagnosis that ruined my career and finances so I think I'm feeling a bit morose anyway. Self pity much, right? 😜
Lyn
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Hi all. Happy Almost-March! I'm still recuperating from the foot surgery. I almost think I'd rather go through chemo again than experience this surgery again! It has been really brutal!
Plus my brother passed away 2 weeks ago so last week we had to fly to Florida for his funeral. You really haven't travels until you have a big old knee high boot and are totally non-weight bearing! It was an exhausting adventure.
Cali, I can relate to what you say about the black cloud! With me, it's not the same root cause, but my whole body seems to want to fall apart. We just have to keep pushing on and stay positive. I feel embarrassed at the litany of my ailments!!! Take care all and keep on keeping on!
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