Starting chemo February 2020
Comments
-
I am happy to report the taste buds are back! It happened this weekend so that was four and a half weeks post TC chemo.
Now if the hair would come in faster. I think I’m very impatient because I’ve been through this before.
0 -
Congrats Craftylife! Good to hear they came back, gives me something to look forward to.
0 -
We are all so close to done with all this chemo crap. I finally go for my final #6 tomorrow. Feeling so good today, except for the pre-chemo dread. I feel like I'm ballooning up in size the last month or two. I am definitely not exercising like I did pre-chemo, and I eat a lot more carbs to settle my stomach, but all of a sudden I feel really fat and bloated looking. I know I have more important things to worry about, but it's a bummer. I'm wondering if it's also because the chemo puts me into menopause, so my metabolism is all screwy. The first few cycles I lost a little weight, but now I'm gaining.
0 -
Hello everyone - just checking in. Last chemo was April 28th, started Arimidex on May 13th and had surgery (tissue expander replacement) on May 18th. Its been a lot - but wanted to share that I do feel better! The biggest/hardest side effect after my last chemo was fatigue - I think it was hard because I wanted to 'be done' with any and all SE of chemo as soon as I left the infusion center for the last time. The fatigue was real - but short lived. I was really nervous about starting the Arimidex and only allowed myself to read the thread that shared good experiences with Arimidex so that I stayed positive.
The surgery for tissue expander replacements was so much easier than the mastectomy and sentinel removal - no drains! I was able to walk 3 miles by Sat - and probably could have done it earlier if not for the rain.
The one 'constant' recommendation that I have read for managing SE of Arimidex is exercise and hydration so I am walking for an hour every morning. My plan when radiation starts in ~ 3 weeks will be to walk in morning, then work, and do radiation in evenings. Luckily the cancer center is only 10 minutes away and I figure that no matter how tired I am in evening, I can always find someone to drive me.
I have found that being bald is bothering me more now - I have a wig, and a halo but am really missing my hair - more so that I have up to this point. Unlike the SE of chemo, surgery, hormone treatment etc there is nothing I can "do" to move the hair growth any faster and I think that is what is frustrating.
Overall - feeling better every day!
0 -
anyone counting down the days till their last chemo? 38 days to go!! How about everyone else? I’m so ready to be done with chemo!!!
0 -
maddy83f - congrats on getting through Chemo and surgery. Glad to hear it gets better and the fatigue goes away. Right now the fatigue is the hardest part and this stupid tongue thing is the worst.
Hray1993 - i was counting down to final Chemo, I hit that on Wednesday. Now I'm counting down until I start to feel better (day 9-10) and feeling good/normal (day 13-14).
0 -
Morrigan, congrats on final chemo!! I never have a predictable cycle as far as Which Days I feel better or worse. With taxol it was all over the place. Maybe AC will be different.
0 -
Heat- counting down the days until my last chemo- 4 days for me! I’m excited, yet dreading it since last round was so rough!
Maddy- congrats for making it through chemo and surgery!
Morrigan- congrats on the last chemo. I know we still have a long road ahead as triple positive gals, but I’m hoping the hardest leg of this thing is almost behind us
0 -
Congrats to all who are nearing the end. Please keep posting for those of us who are behind. Curious about surgery experiences, hair regrowth, etc. and looking forward to hearing everyone post recoveries.
I'm back at cancer center today for round #5 redux. (was sent home last week due to low platelets). My platelet count went from 47 up to 102 during the week delay, so I'm good to go - but with carboplatin dose lowered by 20%. But hey, something better than nothing and the lowered dose at least makes me optimistic that round #6 won't get delayed too. I will have to ask my oncologist what the week delay and lowered dose means for success of my treatment. I am curious to see how the rest of my bloodwork rebounded with my extra week of recovery too. Maybe round #5 won't hit me so hard because of that. (Maybe)
0 -
Hello! It’s been a while since I’ve posted on this group. I’m so glad to hear that so many of you are nearing the end of your chemo!
It has been five weeks since my last infusion. Sometime last week I noticed that I’m feeling really good. The extreme fatigue and chemo fog is gone. A few days ago I found some fuzz on my head!I have had 4 radiation treatments and have 24 to go. I have an appointment with my gynecological oncologist next week. I hope I can have my oophorectomy this summer. I’m so happy that I can see the finish line!
I’m thinking of you ladies!I wish you all the best!
0 -
That's amazing that it bounced back from 47 to 102 in a week.
Good luck with #5. My #5 was at a 10% lowered Carbo dose but kept on schedule. At the time my platelets were 82.
My Platelets for cycle 6 were 79 and, he went full dose. I guess they figured it was the last one, might as well.
Please let me know what your MO says about the week delay and lowered dose. I asked my MO about delays and, he didn't make a big deal out of it, just said he tried to keep on schedule.
I have a meeting with my new plastic surgeon tomorrow. My Insurance company wouldn't approve my first choice because he was Out of Network and my Surgical Oncologist belonged to a group that had several In Network PS. ☹
I'll let you know how it goes along with my 1 week PFC bloodwork.
I will say this week hasn't been great, the Fatigue is Real and, my mouth is killing me, seems to be getting worse not better 🤒. on the brightside i haven't had a nose bleed in over 2 weeks 😁
0 -
micdpowers - my 4th treatment I had low platelets in the 80's I think. My doctor went ahead but lowered my carbo by 50%. And I found it much easier than treatment 3. On treatment 5 I was borderline, so he raised my carbo only to 75% and it was harder, but not horrible. I went today for my 6tth and final treatment, and he didn't tell me my numbers, but said everything looked good. They went ahead with carbo still at 75%.
texasmama - How exciting you are feeling good and starting to grow hair. I'm really excited for that!
mmorigan - Sorry the SE are hitting you hard. Just a few more days and it'll start to clear for good, that's what I keep telling myself. Give it two weeks and I'll start to feel better. I can't wait!
I had a breast exam and he felt my tumor at about the same size as it was at treatment #3, which was disappointing. I started off big, around 10cm, and at my third treatment, he said it felt about 2cm. Everyone was happy. Today he said it felt about 2cm, but we won't have any way of knowing if it's active cancer or just dead cancer until I have surgery and the pathology report.
Frustrating today was the my nurse navigator was back. FIrst thing she asked me was if I had an appt with the surgeon set up. I told her now, because at my last chemo they specifically told me they do this at the next chemo. It's been driving me crazy having no plan, nothing starting etc. She was out the day of my last chemo. She said I should have called her, but I mean, why would I call, they told. Anyway, she was nice and put a call into my plastics nurse navigator urgent and told me "don't call, she's going to call you tonight". Well, it's almost 7pm and she hasn't called, so now I'm still in limbo. But my surgery is supposed to be priority within 3-4 weeks. I feel like I'm going to have zero time to figure out what I want to do, and I'm not feeling great about all this.
0 -
"Just a few more days and it'll start to clear for good, that's what I keep telling myself. Give it two weeks and I'll start to feel better. I can't wait!"
Pretty much my daily motto 😁
"I feel like I'm going to have zero time to figure out what I want to do, and I'm not feeling great about all this."
I'll let you know how mine goes tomorrow but, when I talked to the Nurse she mentioned that they can usually do these kind of surgeries in short time because they're so routine. The longest part is getting Insurance cleared.
I met with my SO 2 days before my 5th treatment and, haven't heard anything about a date. I'm going to call my nurse navigator tomorrow after my PS appointment just to see what's going on.
0 -
Fab4mom- I can completely relate to the scheduling frustration. Both my sister and I went through that mess. It is so frustrating to feel powerless while people aren’t doing what they should. I hope you get scheduled soon. It feels so much better to have a plan.
0 -
My Hemoglobin and WBC were low but, the platelets were fine.
I have to go for blood work next week, he wants to check weekly until I reach a good level.
I asked about Perjeta and WBC since that's a side effect. I won't get Neulasta shots but, they'll have to keep monitoring until my WBC are good/Stable.
My Plastic Surgeon meeting went well. I already knew I wasn't a DIEP candidate but, he did say he doesn't like to pull from non tummy areas so I think I'm stuck with implants unless something happens in the future. I was going implants anyway, just thought about if i didn't like it maybe making a change in 10 years (when implants ready to go).
I was debating between tear drop and round but, he no longer uses shaped implants because of the recent study. I know you can get textured tear drops but, I was 50/50 on which one I wanted so I'm fine with this.
In the end. I'll have expanders which i knew because I wanted to keep my D Cup and that's hard to do going straight to Implants. I will have expanders put in for 3 months before exchange, could change if there's node activity and i need radiation.
I'm getting my gummy silicone, which I wanted.
He thinks my size is fine for nipple sparing but, that is a game day decision since the cancer location is a determining factor.
If they do take the nipples he can do reconstruction if I want.
1 drain per boob (unless he feels necessary otherwise on game day). Drains normally Come out in 1-3 weeks.
All in all a good meeting. Surgery is tentatively scheduled for 6/19 At 1PM. It should take 3.5 hours for both surgeries and, we're doing outpatient (my request).
Fingers crossed my blood work is good and no reasons to delay
@Fab4Mom - I say go in with a checklist, this is what I want and see what they can/will do. That is what I did for both SO and PS, I think it takes pressure off the decision making since you're worried about time between final Chemo and surgery.
0 -
Fab4mom- bummer about the scheduling fiascos. As of all of this isn’t enough to deal with!
Morrigan- sounds like you have a good plan in place for MX and reconstruction. I remember being kinda bummed that there were so many variables (skin sparing/nipple sparing/etc) going into surgery that you don’t find out what option you end up with until you wake up. I think outpatient is a good option. I stayed one night after my surgery, but def did not need to. I’m sure if I had my surgery now instead of in early January it would be outpatient. I hope your chemo SEs start to fade. It’s exciting that you’ve had your last round
I’ve already done the BMX and reconstruction step so if anyone has questions I can do my best to answer. I will say I’d take drains for weeks again over chemo!
0 -
@ajminn - i did ask about skin sparing vs nipple sparing. And yeah itcs all the same, they take it into consideration but, it's all game day decision making. So you never know what you'll end up with.
I basically told him, I'm pretty sure I can live with most anything except looking like a porn star. I don't want to look like he cut a canteloup in half and stuck it on my chest. After he got done laughing he said that shouldn't be a problem. 😁😂
0 -
Morrigan- haha! That’s too funny. Honestly, if I have to find a silver lining in any of this I will say I like my new boobs (implants) more than my old real ones (I mean, they were trying to kill me...mostly lefty...). I really like that I can go braless and they stay perky. That was not ever in the realm of possibilities before. I don’t have nipples anymore, but it doesn’t bother me and if I want there are many options for reconstruction or tattoos. I will say one thing my coworker gave me a heads up on was the lack of feeling you have in your chest after a MX. It’s almost like when you touch that area it’s like when your limb has fallen asleep. I have been surprised at how much sensation I have gained back since January, although there are still some spots that don’t have full feeling and I’m not sure if they ever will.
0 -
tongue issue is mostly cleared up, I still get a fuzzy feeling and food tastes wrong. 😟
I still don't have an appetite and because nothing tastes good I'm not eating which isn't helping. My fatigue has moved into weakness territory.
Today I'm going to force myself to eat, even if it's just fruit, sherbert and jello. I need calories, I tried a shake yesterday got halfway through before it tasted funny and couldn't finish.
Almost over, almost over, a couple more days at best 🤞🏻
For those of you that finished Chemo how long did you keep up with the salt/baking soda rinse?
"but it doesn't bother me and if I want there are many options for reconstruction or tattoos"
Yeah we talked about that too. Good thing is I have all 3 options available. There's a tattoo place about 30 minutes from where I live that is recommend by the NCI for 3D Nipple Tattoos. My PS can do reconstruction and if I don't want either option, I have a couple of really good Tattoo Places by me that I can look into for just tattooing the breasts.
Originally my plan was to do This except on the breasts
0 -
@ajminn3 - glad to hear you like the new ones better than the old. That is encouraging. I don't love my current ones - too large, always feel sloppy, lots of types of tops I can't wear because those shelf-bras are pointless. So, while having my breasts removed from my body entirely seems rather traumatic - I am looking forward to a smaller size, not having to wear a bra, and maybe some new shirt style options. And without nipples, no more "turkey's ready" jokes from my husband.
@morrigan - do you currently have any tattoos? I'm curious because I do not - I like them on other people but never thought I would get one myself - but yesterday when I was researching nipple tattooing I thought maybe I would get something else tattooed on a new boob that would commemorate this cancer experience in some way. Not sure what that would be yet...
0 -
Thanks for the kind words. My oncology nurse thought I'd have to do a telephone visit with the breast surgeon, but the surgeon wants to see me in person, so I have to wait until next Wednesday, June 3rd. The waiting will be hard, and from there I'll have to make some quick decisions to get my insurance approved, but I know it will happen and be ok. I'm just anxious now knowing that my tumor felt the same from the 3rd week of treatment until the 6th, I was really hoping for a complete response and no more chemo after surgery.
Fatigue is bad for this last treatment already, just hoping the next 7-9 days goes quickly and I can feel better and get moving.
I'm totally torn on how I feel about reconstruction. I have no idea what my surgeon is going to recommend with my size tumor, my breasts (a full C, nothing huge, but still plenty), radiation and my lymph nodes. I had three biopsied and they were all positive with signs of more involved. I have heard there is a new procedure where a surgeon can micro attach the lymph nodes to reduce chances of lymphedema. I'm worried about that too, has anyone had any experience with that?
micdpowers - I don't have any tatoos, but I could see wanting a little something to celebrate this journey
mmorigan - I don't do salt and baking soda, just use biotene. My mouth has thankfully been spared any sores, but I do get the fuzzy feel and awful taste bud changes. It's ramping up for me right now. You are just about on the other side, that's exciting! I hope your mouth clears up quickly too.
ajminn3 - It's great you like your new boobs better. That's what I keep telling myself when I consider giving up and going flat. I just need to hear from my team on what they think will work for me, since radiation is involved. I'm afraid of multiple surgeries, infections, re-do's. etc. I just want to get back to life as normal as possible with the 4 kids, and I want to reduce risk and downtime. But I also don't want to feel deformed for the rest of my life.
My kids still aren't done with the school year either! It does give me something to get up and get them working on each morning, even when I'm feeling bad. I got them going, and even did an easy dance workout today, which helped. But then sat down with the tv and immediately fell fast asleep, when the fatigue hits, it hits me hard. I feel bad I haven't done much to celebrate the end of school, my oldest is finishing 8th grade. He's been so understanding.
Also, my daughters gymnastic studio is re-opening in about a week, but I had to tell them she can't come back yet. Where I live is a fairly active hot spot for covid. It's on the decline, but I know they will test me before surgery, and if I'm positive, I can't have the surgery. She's almost 13, really misses the gym, and I know it's going to be hard for her to catch back up, but I don't want to do anything to slow down my treatment plan. I had to do the same with my older son, who is 14, he plays music at the School of Rock, and they are starting back in studio lessons and small groups, but I can't let him yet. I need to see how things go. So far I let them ride bikes or skateboard outside with friends, but that's it. I'm so incredibly lucky that they are understanding of the situation and don't complain. My little guys are almost 8 year old twin boys. Thank god they mainly get along, because they keep each other company all day long. They are coming up on a birthday, but again, no big celebration, as it's right around when I expect surgery to happen.
0 -
"morrigan - do you currently have any tattoos? I'm curious because I do not"
I have 2 one I really love the other is small and I generally forget about it (on my back). I wanted to have it on each wrist but, my mom started arguing with me. I was an adult, I should have just done what I wanted, would have liked it better.😁
I've wanted more but, I could never settle on what I wanted (butterfly or cherry blossoms) and where.
This is the one I love
"The waiting will be hard, and from there I'll have to make some quick decisions to get my insurance approved, but I know it will happen and be ok"
One hopefully helpful note, I asked my PS how long it takes to get insurance approval. She said that even with COVID and some staff working remote it's taking around 3 days. She said the longest it's taken is about a week.
I asked because my surgery is tentatively scheduled for 6/19 and I was worried that insurance would take forever to approve
0 -
Had my final round of TCHP today! My MO reduced my carbo and taxotere a little due to some low counts and my side effects last round. I have pre scheduled fluids for next week as well. I'm thrilled to be done with round 6, but still have HP until next February, 33 rounds of radiation starting 6/15, and monthly ovary suppression shots and daily estrogen blocker meds for the next 10 years. I'll do what it takes to prevent a reoccurrence if I can! Now I just wait and power through this round of SE's from the TC. Hope you're all doing well
0 -
I'm now 11 days out and today is the first day I feel mostly good. Food still didn't taste right yesterday but, hopefully today will be an improvement.
Good luck ajminn! I hope you're finally treatment, treats you better than mine did. 😃
0 -
@Fab4mom - my 12 yo kid does School of Rock too, and they just reopened here too - and I can't imagine sending him in for private lessons yet either. Or a camp. I worry for all these small businesses. Travel softball practices at least (no tournaments yet), are starting back up in IL for my 13 yo daughter. I feel ok about that as they have to split them into 2 small groups and it's outside, etc. etc. No tournaments allowed until we move into the next phase. Other than that, I think we will continue to lay low. Outdoor dining, even, can wait. We have a pool at home at least, sooo thankful for that. I'm hoping to have less to worry about in regards to my lack of immunity and all that by August. All three of my kids will have celebrated their birthdays during this coronavirus and cancer lockdown.
Still just past round #5 so I'm trying to appreciate the "good" side effects chemo has given while I still have weeks to go. 1) no shaving 2) no period (can't even imagine that on low platelets) 3) my face skin, if dry, is absolutely flawless - not a pimple in sight for months (of course, I'm locked in the house so no one to see this) 4) my hairless body skin is silky smooth 5) I'm almost down to a goal weight that pre-diagnosis I figured was "pie-in-the-sky" (I've lost so much muscle and this is not the way I would choose to do it - but hey, I'll take it as a starting point for getting back in shape.)
0 -
Well, I had my first chemo caused trip to the ER yesterday. I had a fever that kept going up and down for 2 days. I was put on IV antibiotic and fluids while they tried to figure out what was wrong. All blood work and tests came back good, no infections or anything. My fever finally broke while on the antibiotics and fluids. They couldn't find any cause for the fever so they released me. My white blood cells, platelets, and hemaglobin were all low but to be expected because of chemo. I feel like the fever was from the mouth sores I've been dealing with since the fever started but who knows. My oncologist prescribed me some magic mouthwash and 5 day antibiotic to get today so hopefully both of those things can help keeps the fever away and maybe all my levels will get back up before chemo on Thursday
0 -
hray - so sorry you had to go to the ER. Glad it doesn't seem serious and they have you on antibiotics. I had the magic mouthwash it makes your mouth feel like a shot of novicaine. I wasn't prepared for that.
"1) no shaving 2) no period (can't even imagine that on low platelets) 3) my face skin, if dry, is absolutely flawless - not a pimple in sight for months (of course, I'm locked in the house so no one to see this) 4) my hairless body skin is silky smooth 5) I'm almost down to a goal weight that pre-diagnosis I figured was "pie-in-the-sky" "
#2 it's been great! I normally get period migraines. The last 5 months have been headache/migraine free.
#5 I hit my ultimate goal weight after cycle 6. This is the weight i never thought I'd make. Now I just have to stay here. I'm afraid I'll go crazy once food tastes right and gain it all back 😁
0 -
It's interesting how different the side effects can be for the different chemo medications. I have not lost weight, in fact because of the steroids, I have gained about 5 pounds and I have that "moon face" that people on steroids get. Moon face and bald are not very sexy lol
0 -
hray - yes scary to go to ER anytime, but especially now. I feel for you. That magic mouthwash tastes sooooo horrible. I hated how it made my entire mouth numb too so I took to just applying it in spots with my fingers.
The skin on my tongue and throat is so rough and ruined right now I'm on a mostly liquid diet plus ice cream sandwiches, but so tired of sweet things. Once my mouth lining recovers I'll start eating anything made with potatoes and/or melted cheese (potato skins being the ultimate combination of both). Definitely some bad food habits to break after all this. Right now I get about one week out of three eating healthy.
I think my eyebrows are starting to fall out. I was holding out hope for them.
0 -
dysonsphere, there is just nothing sexy about me during chemo, moon face or no.
I suppose... in appearance... we can only improve from here, right? By contrast, we should look just stunning a year from now.0
