Starting chemo July 2014
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Tomorrow is hopefully my last round, too! I'm a little nervous because I got the dTap vaccine today, which can cause a fever, but I didn't have a reaction last time I got it, so with a little luck I'll be ok this time, too. Definitely the last round of AC, and the last chemo for a while. After the baby I'll find out if I need to do the Taxol.
Jennliza, I hope you get to go home soon.
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A gal from our local breast cancer support group told me tonight that I get to ring the bell after both chemo and radiation. So yes, I'll be ringing that bell tomorrow!
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Ding, ding, ding! Congrats July Warriors!0 -
walle, why do u not feel anything after the mastectomy?
Jenn, hope things clear out soon. Hugs
Kebab, housework comment made me laugh!!! I almost said it myself.
Tomorrow is AC #4. Oy!
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back from chemo too. Just slept a couple of hours from the antihistamines. I feel ok, but I don't usually start to feel really clobbered for a couple of days, so we'll see.
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Dancingdiva, I have the same thing. It's because the mastectomy cuts so many nerves. Mine is probably a bit worse because they had to go into the chest muscle to get clear margins. I have about a 4" strip across my chest and under my arms where I have little to no feeling at all. Makes things like shaving and putting on deodorant fun.
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Yup the front of my breasts are numb, as well as the area going back under my arms. Mine were very large before my mastectomy so there was a lot of nerve cutting/removal along with the rest of the tissue. Doesn't bother me, really.
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I made it through chemo 4, so only 2 more!!! I'll take my Miralax today, if nothing tomorrow, my Magnesium Citrate 1/2 bottle with same amount gaterade, then Friday morning, I'll be in the potty for 30 min, with water squirt battle and wipes each time, so my bum doesn't get burned, but with NO pain!!!
Getting the bowels moving and removing 2 days of C seemed to help with the big D. I feel like I have already posted this, if I have, sorry, chemo brain.So the MO was worried about my nueropothy and muscle jello, he actually said we might postpone chemo. I said it is not how I used to feel, but I haven't fallen, although some parts of me feel like they are coming out of dental surgery, it is the a little fat and some numbness, not total. He did day I MUST check my feet daily. (I now know I have written this, but I've checked the site and don't see it... so odd)
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Big D - my favorite topic - along with supplies and everything else I have written, have something to distract you when stuck there for a while. A magazine, the movie you are watching, tranfrered over to your phone, or tablet, or like me, the book I am reading. By distracting myself, I think it is helping, or maybe it is just the lomotil. Which I do not take for the first 30 min of constipation releife the day after magnesium citrate. If it went on longer than that, I'd take Imodium. But I do re-hydrate. 1 bottle of gaterade
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Raindew - I have the same problem. If I don't dab my eyes dry with a tissue every few minutes, tears will run down my face. I read somewhere that you can have stints placed into the tear ducts but that seems excessive for a hopefully short term s/e. I can't wear my rings either. I have so much fluid retention I get out of breath easily. Before chmeo, I exercised and rode a bike but now totally sedentary on the job and at home. Everything wears me out.
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woke up with that famous metallic taste in my mouth for the first time today, but my tea still tastes good and fruit hasn't started to taste gross yet (I'll probably only be able to eat fruit for another day, if that) and that's all that matters to me at this moment
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Sancuso chemo nausea patch. I haven't tried it yet, because my husband didn't pick it up, due to it's cost, about $250 a patch w/ Rx ins, over 500 by itself. I called the pharmacy, and they confirmed this, but said I think there is a coupon for it. YEP there is, up to $150 towards your co-pay. Here is the link.
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thanks Blownaway!
Agree I think stents would be a little excessive - but man this is an annoying SE. I'm sorry you have it too :-(
Congrats to our July ladies finishing this week!! So awesome to see us start to cross the finish line. Go Team July!
JennKay - I haven't had that metallic thing yet...curious that it hit you, what, 4tx in?
And someone asked about BMX sometime pages ago (sorry I lost who and when...I am also starting to feel the chemo brain which is unbelievably frustrating at work right now...). I had discussed a range of options w my breast surgeon - her preference was lx and rads unless I turned up BRCA+, but it was my call either way. I just felt more comfortable trying to throw everything I can at doing this once, and (hopefully) only once.
I actually have regained quite a lot of feeling - I had nipple sparing mxs, and other than nipples/areola (which are totally numb - my incisions were around the areola) I can feel touch.
This has both pros and cons - I still have to finish the TE filling after chemo, and I'm guessing it's going to hurt more than it did post surgery when everything was numb...
Healing thoughts for everyone in the chair this week - hope your SEs are minimal.
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DancingDiva, JenKay and Mags - exactly about the BMX. They have to cut so many nerves your chest becomes numb. Feels really weird to me. And one side is worse than my other side - my right of course, and I'm right handed. Doc said that these will try to regenerate and may take a couple years, but I'll never feel like "normal" again. This IS the new normal.
Working on finding a reconstruction doc, figuring out what drugs to take after hysterectomy long term, and what my follow up protocol will be after this last chemo on Wednesday.
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Ladies, thanks for all the info. about BMX. I have some planning to do with my surgeon, and it is very helpful to hear from you all. I think he was hoping we'd shrink the tumor enough so that a lumpectomy was possible. But, I'm still waiting to hear about the genetics. If I have the gene, I guess BMX and hysterectomy will be on the table. Also, I worry about a situation like that of Mags. I mean, I'd like to think that my tumor is just a tumor that hasn't gone into the chest wall. But, if that can't be discovered until surgery, then maybe a mastectomy and possibly a BMX is in order. Sigh. Decisions.
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Raindew, yup, #4 was yesterday. I'm noticing each one is a little different when it comes to the SE's, they're definitely cumulative in my case. My fatigue was sooooo much worse after #3, for example, so I'm not surprised that something new would crop up after #4.
I didn't have the option of a nipple sparing BMX. On the right side the cancer was right under the nipple and in the left they said that due to my large (breast) size, they had to remove so much tissue that the probability of the nipple dying and going necrotic while still attached to me (NO! NO! NO!) because of the blood supply being interrupted was very high.
I swear though, the first time I was in the cold section of the grocery store after my surgery I felt my non-exisant nipples get hard! I joked to my reconstructive surgeon about having "phantom nipples" and ge assured me that that's a real thing, just like when people get phantom limbs. Who knew?
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JennKay and Raindew: sometimes eating with a plastic fork or spoon can help with that metallic taste, also avoiding food from metal cans
Chemo #4, last chemo. It went well, and I rang that bell 3 times with Lew and 2 of my close friends to share the experience. Notice my beautiful bracelet in the photo, thought of all my July chemo sisters as I wore it!
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Wonderful photos Puffin. Really happy that you got to ring that bell today.
Someone here called those bracelets, chemo-sabi bracelets. Sorry that I don't remember who. I loved that - so true. Hubby, says that means "trusted friend". (Yes, Mags, I do remember him... so far
)It has been 2 years since my BMX, and have gotten a lot of feeling back in the skin across my chest. I have had that phantom feeling in the cold also. It's strange. I was told by my trusted surgeon that if you are having a mastectomy it reduces future risk if you remove nipples if the cancer is ductal.
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Hi All, first I want to thank everyone for all your prayers and well wishes...I am sure they helped get me discharged today!
Today would have been 13 days in the hospital!!! I truly can't describe the excruciating pain and despair I went through....all because 2 doctors (1 of which I really like) made a bad call when I was hospitalized for the 1st time on 8/22.
The infectious disease doc thought the port was infected but still released me after 2 days of IV antibiotics with oral antibiotics. The surgeon didn't think it was an infection and didn't remove the port. To be fair, I didn't want to port to be removed either because the docs weren't convinced it was infected since I didn't have fevers nor did anything grow on the cultures.
So I had chemo#3 on 8/27 as usual and 1 week later the fevers started. So in that week and half after being released, the infection got stronger and spread to my leg. Why it ended up in my back upper thigh no one knows.
I got admitted on sat 9/6....the port was removed on 9/7. On tues 9/9, my surgeon went in and surgically cleaned out the infection from the port site. I was put under general anesthesia and the surgery took @ 3 hrs.The fevers stopped a week after they started on 9/10. So while the infection seemed to be getting better the area around the port site got worse.
On fri 9/10, a rash/pimples/blisters appeared all over the port site. My surgeon just started popping the pimples with no additional painkillers. I was begging/pleading through the tears to stop...please give me IV dilaudid. It was way more painful then getting the port removed without enough anesthesia. Oh, and my hemoglobin dropped that I had to get a blood transfusion that night as well. Unfortunately, there wasn't much improvement sat and sun...so my surgeon said she wanted to go back in and clean out the wounds again and look at what's going on beneath the blisters/rash.
So on tues 9/16, I had another surgery. The surgeon said it would take 45min and would go under with just sedation (propofol). The surgery took 2hrs and 45 min...because she found dead muscle which she removed and is being sent for biopsy.
Why did this happen...no one really knows. Nothing ever grew on cultures, but the ID doc said that is common with infections. As for the dead muscle, at this point the 2 theories are either the infection killed the muscle or chemo leaked during one of my treatments and killed the muscle.
Now my Onc wants to change my chemo. She originally prescribed 6 TCH treatments...which I had thought was overkill for having only .6 cm of IDC. I was leaning on doing 5 tx...she always wanted me to do 6. Today she says she wants to switch me to Taxol and Herceptin...just 3 wkly treatments. No Carboplatin... According to her 3 taxol is equivalent to 1 Taxotere...so I wouldn't even be doing even 5 equivalent treatments. I can't do 6 more weekly treatments...I have a job I need to keep and so does my fiancé who has to be there to do my cold caps...not that my Onc is even recommending 6 taxol treatments.
I personally don't think this whole thing is because of the type of chemo I've been on. Infact, other than this infection caused by the port which I think was contaminated from the start (the skin around it never wasn't pink)...I have done extremely well on TCH...mild to no side effects and good blood counts.
I am at a loss of what to do...I am so fearful I won't be getting enough chemo. I NEVER want to go through this again!!! I have to let her know on Monday what I want to do....b/c I am doing chemo on Tues.
Any thoughts???
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Congrats, Puffin! Great pix!
Glad you've been released, Jennliza. Only you know what's best for you, re: chemo. I did AC, not TCH. But, having just done Taxol, I can tell you it's been easier on me than AC. Not sure you need cold caps; MO says that my hair might actually start growing back during Taxol. But, you need to do what's best for you. I'm just happy that you've been released and survived your ordeal!
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JennLiza, first of all, I can't tell you how good it is to hear you've been sprung! We will continue to keep you in our prayers.
I have to say, I'd be surprised that you would have to have chemo at all, except it's most likely due to the grade 3 nature of your tumor, along with the triple positive. But in the end, it's your decision and I'm hoping you have a little time to make it. I'm sure the rest of the ladies will have some input for you.
Welcome back to the world!
Puffin, hooray!
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Jennliza, Can you get another opinion? And you should have a week to make an educated decision. Does she work with a cancer team or is this a solo opinion? You need some answers to questions like these. So happy that you survived. I worried. PTL.0 -
soooooo u don't feel your chest anymore. I gotta say although have the boob seemingly is gone, I can handle it. Having a flat chest I don't think I can, I think I will crash. Why is the underarm affected? Do they do I lymph node dissection at the same time or they take skin out there too?
I have been recovering from the ALND on the left side was cannot imagine having both sides feeling weak and whatever Lymphedema like feelings I have on both arms.
Jenn, ur out!!yay! So if u didn't have this infection, how would they have known about muscle being dead? ( if it goes dead again with new chemo)What r the consequences of having dead muscle? Would it have grown?
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I'm not sure what you're saying about the boob being gone? Do you mean you can deal with one side gone but not both? I haven't been flat at all since my BMX since I chose immediate reconstruction with expanders, which means they place them while they're doing the BMX, so you wake up with them already in. And the underarms are numb because of nerves they have to cut while going in for the lymph nodes, which they also do during the BMX. There's no weakness or anything bedsides some numbness, which you only even notice if you go to scratch yourself or put lotion on or something. Otherwise I really don't notice it in the least. And it's not anywhere near your whole chest, it's in the front of the breast where the scar is, and a little bit under the arms.
The expanders are pretty much constantly uncomfortable, but not actually painful, and I'm told that when they switch them out for the permanent implants it's instant relief.
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yay Jennliza! Thank goodness you are out. What an awful experience.
Did your MO explain why she wants to move you to taxol/herceptin rather than TCH? Does she suspect a problem with the carboplatin? Also, remind us how many TCH you have completed? Is your MO trying to get you to 4 or 5 equivalent taxols?
Puffin - hooray!! Great pics. So wonderful to see another July lady make it through the finish line.
Chemo-sabes indeed ;-) I also wear my bracelet at my infusions
Ps - I haven't found the TEs too uncomfortable, other than the infection after my 1st round of chemo (which sucked a lot and I don't want to repeat). I was pleasantly surprised to wake up with teenage girl boobs from my BMX. Now I have permanently perky B cups, and haven't worn a bra since May...got to be SOME upside, right? ;-)
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whoops, I'm confusing people. I had big ones to begin with, so the big lumpectomy they did which removing the top half of my left boob still left me with some boob that filled with liquid. So although this was a segmental mastectomy, I still look like I have boobs. I have not started talking to surgeons, but I have to . I know a couple people here where I am have and it seems like everybody has a diff opinion. I would like immediate recon but I need rads and again people are on on the fence with immediate recon if I need rads.
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Congrats Jennliza! I agree with what everyone else said. I would ask lots of questions and let no one rush into something that you don't have all the facts for yet.
Puffin, congrats! You must be so happy.I am waiting to see what se's I will start having today. I'm gonna try to run a few errands and hope I won't have vision issues.
knmtwins, are you doing ok?
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Legs all puffed up again from steroids, think I'll try the legs up the wall yoga pose: lay on floor facing wall, butt as close to wall as possible, and then rest legs vertically on wall. May end up with even more fluid in my face, but could make walking easier.
I don't have neuropathy but a friend does. what was the L-something powder that some of you are using and how much do you take?
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Puffin -
It's L-Glutamine, and I'm taking 10g, 3 times per day. That's the amount my oncologist recommended, based on the study of L-Glutamine that was done.
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thanks KiLin
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