Starting chemo February 2020
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Beautiful view, MMSusan! And you look great too.I hope your infusion goes well and the dignicap is successful. I love the prayer shawl. I too feel strengthened by the many prayers offered in my behalf.
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ajminn3- I’m so glad to hear that your family is on the mend. That’s awesome that your kids will come back. I hope you’re able to stay healthy the next cycle. Enjoy the good days!
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ajminn3, I'm so glad your family will soon be back together.
morrigan , the cap did get better. Its a long day and will be so worth it if it worksTexasMama, yes, I can feel the prayers coming my way. Religious, spiritual or simple well wishes, I'll take them all!
This is Day 2 and so far so good. The Neulasta patch will go off this afternoon, so we'll see.
I hope I you each have a peaceful day. 😘
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2nd Chemo today, I've been wide awake for the last hour. Thankfully, I'll sleep at the center.
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morrigan, good luck today. I’m impressed you can sleep during your infusion. I couldn’t no matter how hard I tried.
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ajminn3 - so glad you guys are on the mend. I can't imagine how hard it is to have to send the kids away, but at least you have somewhere to send them!
mmorigan - I hope today is smooth. Insomnia is bad for me through all this. I can usually fall asleep, but I wake up at crazy times and can't fall back to sleep.
So many pictures of beautiful shaved heads. My hair has started to shed like crazy, but I have a ton of hair, so I can still get away with it. I'm holding off as long as I can, but we are going on a long weekend trip to Florida Friday morning, so I think I'll have to just shave it tomorrow. I don't want my hair falling off at hotel, or in the pool! I feel almost completely normal otherwise, which is wonderful. My other little guy has been down with a flu like cold this week, fevers, cough. We don't have anywhere to send him, and I'm feeling strong, so my husband just takes care of him as much as possible. It's stressful though. I'm hoping he gets well, and everyone else stays well so we can jet off for 3 nights in FL. We planned the trip before my diagnosis, and it just works well with my treatment schedule. I'm in IL, so warmer weather is welcome right about now. I'll be doing chemo over spring break, this is our one chance. Plus, with the threat of the coronavirus, I'm worried travel won't be safe for much longer. It's a little scary.
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Fab4Mom- thank you. Yes, I am so lucky to have both grandmas nearby to take the kids if needed! All of our siblings also live nearby which is a blessing (well, sometimes they’re too close haha) when times are tough. I’m sorry your little one is sick. It’s been such a bad flu season. I feel like we can’t catch a break. I’m glad your feeling strong and I hope you guys have a great getaway this weekend!
Morrigan- hope today goes well! I wish I could sleep during my infusion...I have a hard time sleeping anywhere but home these days.
I cut my hair 2 weeks ago to a short bob and threw some hot pink highlights in (color chosen by my 5 year old). My hair is usually longer so short hair is quite a change for me. My hair hasn’t started shedding yet (anywhere), but I know that’ll change, especially after my second round. I’ll be honest...the thought of shaving my head is really hard for me. I know it’s temporary, but I just don’t want to have to do it and my self esteem is going to take a huge hit. My husband keeps reassuring me it’ll be just fine, but I just hate the idea. Otherwise I am feeling really good this week and am enjoying it until I go for round 2 next week
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they only gave me 1/2 of the Benadryl this time so I'm not sleeping as much, last time i was out for 4 hours. I have 2 hours left, good thing I bought a book 😁
Unlike MNSusan my view is a crappy parking lot 😄
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Fab4mom- I hope you have a fabulous trip! I think it’s so important to do fun family things during our good times. I’m looking forward to this weekend. We expect temperatures in the 70s so I think we’ll hike in the morning and shop for prom dresses in the afternoon.
Morrigan- Yep, I get to look at an ugly parking lot too!
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Anybody have any idea where to start in researching mastectomies? A friend that had BC 6 years ago completely overwhelmed me with trying to educate me on what I need to choose between. Part of me wants to stick my head in the sand, but the more rational part says if I learn a bit at a time I should have enough knowledge by June (when chemo will be over and the next step has to happen) to make a choice. I am pretty sure my understanding is that they can do the mastectomy and reconstruction (or implant) all at the same time, but given that I will probably need radiation, if I don't do the reconstruction or implant at the time of the mastectomy, it might be hard to do later given what radiation does to skin (makes it very difficult to do surgery on radiated skin).
I really wish I could just do chemo and be done with this nightmare. Having to think about what happens after chemo makes it too overwhelming.
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@TaraMom - I'm in the same boat, surgery in June. I've been reading these Surgery Boards on the site, very helpful.
https://community.breastcancer.org/forum/91
https://community.breastcancer.org/forum/44
https://community.breastcancer.org/forum/82
The last one is for people who chose not to do reconstruction (if you're thinking about it).
As far as Radiation, what they do is put Tissue Expanders in to hold your shape (for about 1 month from Surgery to Radiation). Then they deflate the Expanders (saline) during Radiation and slowly started to inflate the expanders post Radiation until you get to your property size. I'm told exchange surgery (swapping out TEs for Implants) is 4-6 months post Radiation completion.
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TaraMom22 - I have been thinking the same thing lately. I'm supposed to have my last chemo late May, and then surgery, and then radiation. My surgeon didn't get into the specifics of any of that, she just said we'll meet back up after I finish chemo. But now I'm starting to research, and the surgery part seems pretty hard. I'm definitely having radiation too, so I don't know what that means in terms of reconstruction. My surgeon was pretty strong on the fact that with my kind of cancer, often a lumpectomy is just as effective as mastectomy, and that many women go for the double mastectomy out of anxiety. I have a lot to think about, and want to be prepared. I feel like I hear so many surgery and reconstruction horror stories.
ajminn3 - I can't believe you haven't lost any hair yet. Mine is shedding like crazy. I have really thick, full hair, so there aren't bald spots or anything yet, but it's just pulling out like crazy all over the place. It's a mess.
mmorigan - I don't get benadryl, that's why I don't get sleepy during chemo. Hopefully the time passed quickly for you.
I'm going to my 8th grade sons jazz band concert tonight. I feel like it's my last outing with hair. I think it's funny, people who know, but don't know me well, see me and I think they wonder if I really have breast cancer because I'm out and about like normal, and I still have hair. I think people expect me to be laying in bed all day or something.
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TaraMom22, one of my good friends from med school is a plastic surgeon who does a lot of reconstruction in breast cancer patients - I had a long conversation with her after my diagnosis to try and understand my options. In her experience, all implants develop capsular contractures after radiation, whether the implants were placed before or after - it's just a matter of what degree. Her opinion was that if there is radiation in the plan, and you want reconstruction, you should get a DIEP, which doesn't need to occur immediately. However, if you do a DIEP later, after the cancer is already out, you may have trouble getting insurance to cover it. And the DIEP is a really complex surgery, you definitely want someone who's done a lot of them - might be worth researching surgeons in your area with a lot of experience and get a consultation sometime in the next few months (and see if they've also found capsular contractures consistently in patients with radiation, there's always a possibility that there are other variables that contribute to my friend's findings and implants might still be an option)
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I had a bmx with diep flap reconstruction in December and I am pleased with the results. I totally agree that you want someone who has done a lot of this procedure and you want to stay in a hospital where the nurses have cared for a lot of diep patients.
I'm going to have radiation after chemo. My plastic surgeon wants to see me close to the end of my chemo to see if a revision surgery is needed. Right now neither of us think that wil be necessary. He likes to do the surgeries before radiation.
I don't know anything about implants, but I would be happy to answer any questions you have about my diep flap.
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Sorry I have been MIA. The second of round of AC has been much improved. One week in, I have gotten some fatigue but I did have my scheduled IV with steroids. I feel great now. MO has suggested I get 2 IVs this week and I declined because I don't feel it's necessary. Does anyone else get scheduled IV fluids the week after infusion? I feel like 1 is enough but he suggested his job is to make me feel as normal as possible and having one on Wednesday/Friday prior to the worst days (days 7-11 of cycle) would be his suggestion. Otherwise, I've been feeling much better but he felt that since SE's are cummulative, it would be a good idea. Hope everyone is having an easier time since they started!
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Oops. forgot to mention I had upsetting day on Monday because my hair was really becoming patchy in places. I shaved it rather short, but it just keeps "shedding" everywhere. I will be glad when I'm just bald because the places where there is hair is very sensitive and I'm tired of seeing short hairs everywhere! I was really surprised how emotional I was to see my bald head. It's not so much losing the hair, as it is the appearance of the patchy bald spots because it's just not what expected to see. I guess I thought somehow it would magically become bald but the process to bald is not that nice and neat!
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I had a hydration infusion one week after my chemo and I think it helped me tremendously. I'm going to keep it automatic. I didn't realize I was dehydrated, but I was 6lbs down. I had the hydration, and the next day I started feeling normal again, and by the day after, I was bounced back and my 6lbs were back. I liked it.
I'm shaving my head tonight. I feel like it's a dream, I can't really believe I'm going to be bald. My hair is shedding like crazy, handfuls today. So I know it's time, but you still can't tell by looking at me because there aren't any big bald spots.
I'm getting more and more nervous about my surgery options later. I didn't realize how complicated the options are with radiation involved. I'm glad I have time to do alot more research.
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Pic of my current hair- shortest I've ever had it and only time I've ever had pink in it haha. I always have longer hair and wear it in a ponytail so it's been an adjustment
Dysonsphere- I don't have infusions scheduled, but they said if I need I can always call and come in to get some fluids. I seemed to make it through okay last time, but it's certainly in my radar to do if needed. It's good to know about the patchy/hair shedding/going bald process. The thought of it gives me so much anxiety. My hair hasn't started shedding at all yet and part of me dreams that my hair won't go but I know it will and it's a hard pill for me to swallow. I know I'm going to be very emotional when I have to shave it.
Fab4Mama- Everyone on my medical team I have talked to (plastic surgeon that did my reconstruction direct to implants, breast surgeon, nurses, oncologist) have all been so nonchalant about me having implants and having to do radiation (this June most likely). Every concern I brought up they basically said radiation is so targeted that these days a lot of the side effects aren't as intense and they don't anticipate me having issues with radiation (although of course they can't promise that). That could also be due to the location of where I'll get radiation? Idk. I just hope I made the best decision for myself overall.
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Hello, all! I am joining the group late. I had my first chemo treatment on 2/13. I felt great until the Neulasta kicked in. I'd taken Claritin two days before treatment and for several days afterwards but it didn't help. My joints ached horribly. Doctor prescribed some pain killers so I could sleep. I took 3 of them over two days and felt much better. I was very dehydrated and not eating. I received an infusion on day 8 and it was a miracle! I'd lost 10 pounds and gained back 4 that night. Since then, I've played tennis twice and my appetite is back. Next treatment is on the 5th. I'll definitely do an infusion sooner rather than later next time.
Hugs to each of you on this journey.
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Welcome Cricketdog! What is the name of the pain medicine your doctor gave you? I also had bone and joint pain from the Neulasta. My doctor prescribed hydrocodone with acetaminophen, but I could not tolerate it. I’m concerned about having the pain in round two.
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ajminn3 - Your hair is adorable. Maybe you won't lose it? It's only listed as a 50-60% side effect on my side effect sheets, I thought that was surprising. My hair is falling out like crazy now, it's probably at least 1/3 out. It's a mess, there is hair every where in my house, on me, etc. I'm still not sure I'm ready to do the shave, I'm not going to be cute bald and I have (or had, as it's almost half gone) really good hair.
Welcome Cricketdog - I had the same experience with the lack of appetite and dehydration, followed by infusions and huge rebound. Neulasta didn't bother me
TexasMama - I hope the pain is more tolerable this time for you. All these side effects are so frustrating
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Dysonsphere - soon after I had shaved my hair very short my scalp became very sensitive as well as the hairs started to fall out. I found relief by using baby shampoo on my scalp in shower and really massaging/rubbing it with a soft hand towel. Got rid of all the hairs that were ready to come out and finally felt better. I also make sure to run lotion on my scalp at least once a day.
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oh joy my favorite side effect is back...stupid Thrush
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Cricketdog, welcome. Wanted to let you and Texasmama know that I had a really miserable night 5 days after Neulasta (Chemo Day 6) in round one. Horrible back spasms and pain along my spine and back. It was pushing me to my limit, and even natural childbirth didn't hurt that long. Not trying to scare you or freak you out. I just made it past that point in Round 2 and new strategy worked! Started Claritin on the first day and take it every day. Started Ibuprofen 600-800 mg with food every 6-8 hours, on Chemo Day 5 and kept that up for two or three days, alternating with Tylenol sometimes. Rubbed Therawerx foam into my back. Took Zyrtec antihistamine 12 hours after Claritin on those days. Had muscle relaxers and Lidocaine patches on hand, but didn't need them. Also had heating pad at the ready. What a relief that the pain never showed up. So have hope for your Round 2!
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Welcome to the group Cricketdog!
Fab4Mom- I wish my hair would stay, but unfortunately I know it’s just a matter of time before it starts going. I ask don’t think I’ll be very cute bald haha. I think I’m going to need to invest in more hats!
Morrigan- ugh I can’t imagine thrush is fun
do they give you some meds for it? I got some mouth sores my first round and it wasn’t pleasant.0 -
"ugh I can't imagine thrush is fun
do they give you some meds for it? I got some mouth sores my first round and it wasn't pleasant."They gave me 4 bottles of Nystatin I had 2.5 left after the first time. I started using them again as soon as I noticed my tongue turning white and as of this morning it's mostly cleared up. I'll continue with treatment for today/tomorrow and hopefully it will be all gone.
I guess the good thing is, now that I know it's a normal SE (for me) I can start the medicine as soon as I see it and it won't get to the bad point. The first time it went into my throat and I had a hard time swallowing. Now it was just some mildly odd tasting food.
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Hello all,
I had my first AC chemo last Thursday (2/20) and I was surprisingly calm during the treatment, but the steroids made me hyper so after that crash I took a nap and woke up with acute nausea/vomiting. Nothing helped until my second dose of Phenergan. The weekend was rough, I slept a lot, cried a lot, hurt all over and lived off chicken noodle soup and mashed potatoes. I've been extremely fatigued and had a slight fever and cough so I called my doctor and he called in a Z-pack. Wednesday was the first day I was able to really get off the couch and do anything, but my heart would race and I would need to sit down.
I had my follow up yesterday for labs and my blood counts are low, my white counts are 1000, iron is low, neutrophils are really low and I have bronchitis so he immediately hooked me up for IV antibiotics and fluids via my port and put me on a stronger antibiotic. He seemed surprised that my counts were so low already but good news:
My tumor has already shrunk and the area in my lymph node is smaller after just one treatment! So I may feel worse than I've ever felt in my life, have no immune system but chemo is working so it's worth it to me.
So I'm out of work until this is all over, binge watching Netflix and just taking it one day at a time. It's hard to be anything to anyone right now especially my daughter but my parents have really stepped up and helped out on that front and so has my boyfriend.
Praying for all you February chemo ladies. It's rough but we will get through it!
Tip: If you feel feverish at all, even if it's not 100.5 don't hesitate to call your doctor, they can do things to help you feel better. I was neutropenic and didn't know it bc my fever never climbed past 100.3.
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Welcome Butterflywarrior and Cricketdog.
Today is Day 5 for me and I’m doing well so far. No nausea, no pain, no taste changes yet. I feel “a quart low” and don’t want to do much. I’m waiting for the other shoe to drop, I guessI hope you each have a peaceful day and relief from any side effects you might be having.
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Butterfly - Sorry you had such a rough time with your first treatment but, congrats that the lymph node and tumor have shrunk! Excellent news!
MNSusan - Glad you're having a mild impact with the TCHP. My SE are pretty mild and manageable as well.
Off to get my Neulasta shot. No idea why but, my PPO refuses to pay for the patch. Good thing my center is 1.5 miles from my house. Would be annoying if it was a long drive.
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Morrigan- glad you have some meds to help with the thrush. You make a great point about knowing your normal SE and being able to treat it accordingly. It’s so fascinating to me how everyone’s bodies handle things/react differently. Bummer about having to go in for the neulesta shot. I’m glad you live nearby! I will get the Onpro auto injection this next round and am curious how that’ll go for me.
Butterflywarrior- welcome and sorry to hear about your rough weekend and SEs. Hoping they pass and you start feeling better soon. I was neotropenic after my first round too. It’s no fun. Glad you had a good on call Dr that for you some meds!
MNSusan- I felt the same way following my first round of TCHP. I found I also had generally mild SE, well, beyond the neutropenia that turned my life upside down for a few days. Hoping for continued minimal SE’s for you! Also, I know we chatted in another thread once- were you able to find someone in MN to continue care up here? Warning, the views out the window aren’t nearly as pleasant
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