August 2015 Chemo Group
Comments
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@Mom2aboy : I'd say it was my pleasure to start the thread, though I'd really appreciate it if we didn't need a thread, ever, for something like this. That said, I completely understand what you're saying re: philosophical opposition to chemo. I've always said that I'd have surgery if it would save my life (just did that a little over a month ago), but chemo is another story. In a previous lifetime—well, a previous chapter in this lifetime—I worked in natural foods/supplements, and spent several years convinced that allopathic medicine had nothing on me. Lo and behold, here we are, and it amazes me that I never once questioned the fact that chemo is something I'm doing; the surgery got it all, yes, but I'm going for a cure, here. Chemo is the most likely thing to provide that cure. I'm 36 and pre-menopausal, so for me that means there isn't an upside to a riskier path, either. Hook me up, give me the potions, and we'll go from there.
I'm doing TCHP (it sounds like you're doing TCH), six cycles every three weeks, Herceptin for a year, and probably another mastectomy to reduce my risk of another primary cancer. We're starting essentially the same regimen (minus the Perjeta, which I'm told causes uncontrollable diarrhea and an acne-like rash—fun times) about 24 hours apart. Can you tell us more about the interferon injections? Was this something your oncologist recommended? Mine is holding off on anything and everything, minus anti-nauseas and steroids, until we see how my body responds. . . .
@JenPam, that first shower. Man, that shower reminded me of the shower one takes after a week of camping in the wilderness. I'm so with you. Good luck with Neupogen; as I said above, I'm not getting anything (Neupogen, Neulasta, interferon) unless/until my MO says "go," but I'll be sure to ask you about those injections if/when the time comes!
Re: brain mets. Yeah, I read that, too. And, in a nutshell, my MO says this is why we're doing aggressive chemo and why we did aggressive surgery. Mets aren't a sure thing, though, and her advice (which echoes my breast surgeon and the patient navigator) is to deal with this one thing/day/item of business at a time. Not easy for me, as a classic type-A, let's-be-prepared-for-everything kind of gal, but it makes the most sense. Big hugs. And three cheers for chemo that will stop those mets in their tracks, should the berserk cells have any ideas.
@pavlovsbell (Jessica), I'm doing whatever I can to feel better, too. Some things are hokey and the doc has said no to a couple of others, but I'm doing whatever I can (tons of fluids, ginseng and maybe glutamine, maybe medical marijuana if need be [I live in a state where it's legal]) to feel okay through this. I made a joke the other day that I'm just going to be high for four months. . . and that might actually happen, depending on what the decadron and Zofran will do to me. I'm reliving my misguided youth, somewhat against my will!
My own update: yesterday my back hurt, and the first place I went psychologically was "bone mets." Then I remembered that I spent a good portion of Saturday night sitting in a wooden chair that must have bruised my back (I've never been a delicate flower; this is new). . . . It feels better today. So, yeah, with the not panicking thing. It really doesn't do any good to panic; here's to accepting the new normal and moving forward bravely.
I'm also seriously considering having my healthy breast removed in the name of 1) preventing a second primary cancer, and 2) symmetry (!). I'm just not sure I want to deal with reconstruction. But, there I go, getting ahead of myself again.
xo
-kate
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JenPam, are you receiving Perjeta? Ask your MO about it. I think it is given adjuvantly in some cases and it works against HER2+ cancer.
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To anyone with ringing in the ear, I have tinnitus in my right ear because of my Fibromyalgia. It's a steady high-pitched ring that never, ever changes in volume or pitch. I find that having a low-volume white noise, like a fan or soft music, the TV, in the background can help. But keep it low, or you may find yourself going crazy from that noise, as well as the ringing. And concentrating on something makes you "forget" about the noise.
Also, please consider that when your sinuses back up into your eustacean tubes, it can produce tinnitus. I get that in my left ear from constant allergies and small sinuses and tubes. It's different from the right in that it is not a steady ringing, but broken up, like Morse code in a higher, but wavering pitch. If so, you might ask your doctor to check your sinuses and a nasal spray to help dry it up.0 -
Well here is my update. ...
Neulasta shot on Sat....no bone pain thank god!! Walk outside....sheer exhaustion and complete breathlessness the ER yesterday as I was convinced the AC was messing with my heart or lungs.....ECG, Chest xray and bloodwork done and sent home packing. I have a borderline ECG with right atrial enlargement that now scares me because of the AC but I am hoping that this is ncs although I will mention to the oncologist. Today less breathless and really taking it easy.....still no energy really but no nausea so horraahhh.....I think I am doing good?! Yesterday really broke me but today I feel a bit better 0 -
sbeddows, I think you're doing very well and I would have gone to the ER, too. And I would mention it to the MO as well. You're doing just fine!
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Just wondering what has turned out to be everyone's worst day? Day 3? I'm hoping day 4 is better, not worse!
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Hello, again. I hope you are all doing well.
I had my port placed today. I checked into the hospital at 7:15 am, surgery at 9:15 and left the hospital by noon. My surgeon likes to make sure his patients can't move during the procedure, so I had general anesthesia. All I remember is being wheeled into the OR then waking up in the recovery room. I tolerate anesthesia pretty well, so there was no nausea. Had some apple juice and crackers, an oxycodone pill, then got dressed and went home. I am sore where the incision is, but no neck pain. I hope to be able to go to work tomorrow.
Sending good thoughts to everyone.
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Glad to hear about your day, VickiRides. I had my port placed today too! I expected more discomfort but the port placement was easy for me. I have just a slight stiff neck, no pain meds after, so far anyway. Happy to report! Now we need to psyche up for the next step. My first chemo is a week from today.
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Vicki and SDCA, so glad to hear your ports went well. I get mine on Thursday. Had my pre-op today.
Sbeddows, I totally would have gone to the er for that. I'm glad it turned out to be ok. I hope you have fewer side effects next time!
Has anyone looked into fasting for chemo? I've been reading about the possible benefits and I'm planning to ask my doctor at my next appointment. Here is a link to a thread about it. https://community.breastcancer.org/forum/69/topic/823107?page=1
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FYI - I've been trying to keep a list of all of the August peeps and their treatment on my first post on this thread (page 1, post 2). Not sure if that is of value to anyone or not. If you want to be included, let me know if I missed you or made a mistake.
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Tam-iam, I've been following the research and clinical trials on fasting for chemo, but the duration of fasting is greater than what I feel comfortable attempting (Longo recommends 72 hours prior to chemo). However, I'm very interested in the prospect and have been fascinated by the science. One thing I've done is not obsess over "filling my tank" constantly. Pre-BC, I didn't eat many meals, and I regularly went 12 hours between meals. I know that's not considered to be the norm, but it worked for me. I have my surgeon's approval not to have to wake up and eat at least every 8 hours, so I'm basically going 12 hours at a time between meals from bedtime to next meal. Throughout the day, though, I'm being careful to take in healthy and adequate calories. My oncologist wants me to maintain my weight, so I'm trying to do the best I can.
CassieCat, I'm meeting with my oncologist on Thursday to discuss adjuvant Perjeta treatment. He's open to it, but he told me he wanted to discuss pros and cons. His recommendation had been Herceptin & Taxol only. What has your experience been with adjuvant Perjeta, especially in combination with Herceptin and other meds?
Sbeddows, I'm glad you went to the ER! I know I've been told to follow up on anything unusual, and heart issues are nothing to play around with. I'm glad you're okay!
Justamom, the worst day...I don't think I've been around the block enough to say yet (only 5 days out from my first AC treatment), but for me, the anticipation is the hardest part. I certainly was the most fatigued on days 3 and 4, and I had more nausea at that time. I'd like to say that I'm on the upswing, but who knows? I'm interested to read what others have to say about their experiences.
So my very natural-minded BC surgeon said I should wear only deodorant, and not anti-perspirant, on my affected underarm. She recommended Old Spice Fresh, which is made for men (but strong enough for a woman!
) yet not overly masculine in scent. Apparently it's tough to find a decent deodorant-only product for women. Has anyone else been asked to avoid anti-perspirant? I am generally the least crunchy person, and everything I've read has discredited a purported link between anti-perspirants and cancer, so I was a bit taken aback. 0 -
Hi all - I am jumping over here from July Chemo board since I really am an August Chemo. I had my first treatment on August 3 - cytoxen/taxotere. I am a week out and I would say it hasn't been too bad. I feel pretty normal now except for that weird taste in my mouth that won't go away. Last week I had days I felt pretty normal and days I just felt "off" - like I was on the verge of the flu or something. I continue to exercise which makes me feel so much better. I strongly encourage everyone to try and get out there for a walk or something. It definitely helps mentally and physically. My next treatment is August 24 (I have 4 - 3 weeks apart). I am trying the Penguin caps in hopes to keep my hair. They are a pain to do during the infusion but if I keep my hair, it is worth the work. Will keep you posted. So far my hair is intact but it is still too early. I hear it falls out Day 14-21. I ordered a wig so I am prepared for whatever happens. Trying to just take all of this one day at a time. I was diagnosed on May 27 and it has been a whirlwind of good and bad news with this dreaded disease. Breathe in, breathe out....
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Jen-Pam, I'm doing TCH+P--my oncologist put it to me this way: "we're going for a cure, and Perjeta makes that more likely." She then drew a diagram of how Herceptin and Perjeta work differently on HER2 receptors: imagine that the HER2 receptor is shaped like a Y. Herceptin binds to the top of the Y, essentially filling the gap there. And Perjeta comes in and surrounds the bottom of the Y, closing it off. She said that adjuvant Perjeta is so new that we don't have long-term survival studies (yet), but that she and many of her colleagues are hopeful that Perjeta is the magic bullet, ESPECIALLY with high-grade BC (which it looks like you and I both have).
The cons: when combined with Taxotere and Carboplatin, Perjeta can diminish white counts even further. It can cause major diarrhea, and it can cause an acne-like rash across the face and chest. My MO asked if I was willing to put up with those SEs. . . I looked at her diagram, remembered the word "cure," and signed the treatment plan. I figure I can deal with all three of those much better than I can deal with having to do this again.
As for deodorant: at a lot of natural foods stores and some major chains, there's a product called Crystal Stick. It's exactly what its name suggests: it's essentially a salt stick that you wet under water and then rub under your arms. I've been using it for years. It works very well as a deodorant.
I hope that helps. Good luck to you!
Suzanne50, welcome! It's nice to hear that you haven't had many SEs. Keep going strong, and keep us posted!
-kate
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KateB79 Hello from the July chemo group! I just wanted to share that I started TCHP on July 27th. I got both SEs that you described from Perjeta: horrific diarrhea and acne rash. The rash was on my face, neck, chest, back, and scalp. They are still trying to figure out how to treat it as it's rather awful. They did suggest steroids but are hoping with a combination of topical acne meds, allergy meds, antibiotics, and pain pills they can minimize the issues. My dermatologist wants to avoid steroids if at all possible. It cropped up 3 days after my infusion and took about 10 days to be clear enough where I felt comfortable, but my skin still doesn't look quite right yet.
As for the diarrhea, a lot of people on other regimens suffer from constipation but if you're anything like me, you'll have raging diarrhea. I highly recommend taking preventative Imodium. The cramps and pain were one of the worst side effects at the beginning (think audible bubbles that can be heard across the room!). I now take it every morning when I wake and it's resulted in me having simply normal bowel movements.
Best of luck August group!
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JenPam, I had Perjeta neoadjuvantly (did TCHP), but generally I think I tolerated it well. With four different agents at once, it's hard to separate out SEs, but I don't think the Perjeta was especially hard on me. I'm glad you're talking with your doctor. I only mentioned it because, along with Herceptin, it seems to be a game-changer for HER2+ cancers.
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Tam-iam: thanks for keeping the list. Pls. add that I'm doing TC for my treatment. Not sure if you're doing # of sessions but I will have 4.
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Suzanne50: looks like we have similar treatment plans! My side effects have been a little worse than your's - but I'm particularly interested in the "crappy" taste in your mouth all the time. I have it too. Sucks
. Have you found any mint or something to suck on to alleviate it? I tried candies but the sugar helped for a second and then tasted worse - plus trying to avoid sugar when I can. Thanks!0 -
@sparklypink - I have also tried sugar candies which I agree, help for a second. Biotin mouthwash seems to gives me a little break. Does anyone know if this lasts the entire time you have chemo? Or does it come and go each cycle? May be my imagination but it seems slightly better today. Still there but not as bad. Or maybe I am just getting used to it.
The other side effect that I forgot to mention was the lousy sleep I got for the 5 days I was on steroids. Holy cow - I slept about 4 hours/night and then the night I came off, I crashed for 10 hours.
I am going to see my MO shortly - am going to ask him about all of this.
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SDCA - Yay for easy port placements! I start chemo next Thursday, so I'll be just a few days behind you. I hope all goes well for you.
Tam-iam - I hope your port placement is easy too. Best wishes.
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Hey! I am also on TC. Also 4 times. My first session was July 27. So I'm exactly 1 week ahead of Suzanne50
My hair started to thin out a little bit last Friday, day 12, today is day 16 & most is still there. (exactly what the chemo nurse said - it will start to thin out then gone). I have thin fine hair to begin with, so ... whatever... (I have a friend who went bald since his 20s, so we will be twins for a little while.)
The Steroid (day 0 to day 2) wasn't too bad. It has a nausea med (Zofran) to go long with it. The Chemo itself was ok... tiredness, lost appetite, I threw up few times (probably also from eating too heavily Sunday night). I end up in the ER day5 because of low Sodium - "critically low" at 113. (wasn't eating & drank too much water). They had to admit me, had me on iv & waited for a room upstairs (apparently they can't just put me in any room due to Chemo, & had to wait for a private room near ICU for monitoring); I was there for 18hr, & before there's a room available, the sodium went back up to 125, so they let me go home. My discharge paperwork stated how much daily calories I should have... Now I know.
& I DO have that weird taste in my mouth, the sugar free cough drop didn't help much, but chewing gum seems to help. Maybe I will try Biotin They were out of it at my closest Target.... good thing I live in a big city!
deodorant: I have been using Tom's for couple years now, the one without aluminum.
The biggest reaction I have was to the Neupogen (day3-7) -- headache, low grade fever & the feeling I'm on a boat. Those went away day 8. That wasn't mentioned in the drug information sheet I got! But friend of mine is a Radiologist, & she said those are normal reactions!
I took the week off from work (+ 2 days to recover from the ER sting). & and I'm working half time since last Wed (day 10). Feeling pretty good.
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I started on my first chemo on 30th July (Thursday), I got Cyclophosphamide and Taxotere, but at the time I didn't know I was suppose to get a shot the next day of Neulasta. The following week Tuesday I went for blood work and called the doctors office to find out how it was and was told good. It was on the Friday - the week after I discovered I was suppose to have had the shot so called the doctors office, was told they would get back with me, and never heard from them. So toward the end of the day I called the other office and got a number of a supervisor. Then got a call from chemo nurse saying I have to come in for 3 shots the following week, on Mon, Tues and Wed. But by Sat I was unable to get out of bed and by the afternoon my temp went up to 101 and my husband took me to the ER. Turned out my white blood cell count was only .5 and should've been above 5. They told us this was a life threatening situation. Stayed in the hospital till Monday. What does one do when not knowing the procedures, trust the doctors staff? Who will end up paying the huge medical bill? I am wanting answers from my onocologist when I meet with him today and if they are not good enough, I think its time to change.
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Saw my oncologist today - he said that weird taste in mouth will come and go throughout treatment. I will get it every cycle but won't last the entire time. He suggested spicy food or salty food. Something that will mask the taste. Food with sauce instead of plain food.
@alexis - I would be pretty aggravated myself if my office didn't inform me of the procedures. I saw an chemo nurse that went over everything with me before I started - all the meds, side effects, everything. I definitely would look into finding a new dr.
@superluschantgal - sorry to hear you ended up in the hospital! That is awful! I wonder why all our protocols are different - I am taking steroids for 5 days starting with day before. According to my dr. it helps you feel better during that time. I thought it was to avoid an allergic reaction to the chemo. I also took Emend for nausea which helped. I really wasn't that nauseous at all. Just a bit here and there. So the drugs work if you can take them. I only took a few zofran as needed. I hear they constipate you and didn't want that problem on top of everything else.
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I think we all have slightly different treatment because the different diagnosis. For me, I had Mastectomy, lymph node -ve, ER/PR +ve, HER2 (FISH) -ve. Oncotype 27
-- hence the TCI was given a stool softener, only took once. I have the Oxycontin from surg (which i didn't need to take at all), & was told by my oncologist that I can take that when on the Neupogen if needed, instead of Tylenol. .
alexis39: I have KP & we have to take a class before the Chemo begin, the nurse explained everything -- what to expect during the treatment - the step by step protocol they have to do; side effects & self care and answer any questions individually. Well, obviously I didn't follow the "Make sure you EAT" order... learnt my lesson.
I will see the Dr this friday before next round, then blood test day before (to check blood count to green-light next round)
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Hello,
I'm starting TC chemo on Aug 17th. I'm 50, married, kids in college, and retired. I'm a little overweight (BMI 26-27), but I walk 4-5 miles a day. I'm starting to mostly eat vegetarian food (and more organics, nothing with hormones the doc said), and I have to give up a good glass of Zinn for the next 3 months.
I'm scared, but I'm feeling better about my decision. My Ki-67 was high at 27%, BRCA 1/2 tests are negative, but I had "variants" of the genes. My mom passed last year from a very aggressive ovarian cancer, and the doc said that I have enough high risk factors that he recommends chemo. He estimated that I'd be in the low-intermediate range of 17-22 on the Oncotest and since the TailoRx study is not in yet, if I knew my score what would give me the most peace of mind? I picked the chemo.
I see that a few of you are getting 4 sessions of TC like me. Anyone with risk factors and cancer markers similar to mine? Since there is no protocol right now for the intermediate Oncotest scores, I'm wondering if others decided on the chemo for a 3-4% (or so) increase in disease free survival. I guess we're all here because we want to do everything we can in this fight. I'm doing chemo, radiation, tamoxifen (and later the AI's).
Please let me know how your chemo is going. Any tips, symptoms, solutions, or must-do's would be greatly appreciated. We're all in this together.
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Good morning everyone!
Suzanne--I'm definitely focusing on getting some exercise, even if it's only a walk every day. I believe I mentioned earlier that I hate to exercise, but I'm treating the "30 minutes a day" recommendation as an official prescription. Have you tried chewing xylitol gum? It helps with keeping your mouth clean and can reduce some of the bad taste. I've been avoiding spicy foods, b/c I don't want my stomach to have to work too much, but I agree with adding sauces. Tonight I ate chicken and angel hair pasta with a cooked lemon & caper sauce, which tasted almost normal.
Kate and MissBee--thanks so much for the Perjeta information. I appreciate it! I'm copying and pasting notes from here to bring to my MO on Thursday. Is it safe to take an Imodium daily, and if so, how long can one continue that? I have to admit the idea of constant diarrhea worries me (I suffered from IBS many years back and would prefer not to relive those days!).
Superius--sorry to hear about what happened as a result of not eating enough...yikes! How many calories were you told to take in every day?
Alexis--I can't believe nobody remembered to administer your Neulasta, and it's especially unfortunate that your immune system was clearly seriously affected. What sort of plan is being put in place to ensure a similar oversight doesn't reoccur?
Sloan--I'm sorry to hear about your recent loss. You have a very impressive walking schedule! My BC is high grade, so I'm doing whatever the MO wants to throw at me...at least and until I can't handle the side effects. Easier said than done, I know.
Here in Maryland, we have amazing fresh sweet corn at the local markets. Since I can't eat it off the cob (don't think I want to try to digest that right now...), I'm about to cook and puree a dozen ears and make a nice corn broth. Anything other than water!!
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Yes. I'm doing chemo because of the oncogene being 27 & my age being so young (42), without any family history of cancer. So I think the Dr wants us to be on the offense to beat this. I have few MD friends & they all said that for younger patients, treatments are usually more aggressive. That might be part of the reasons to have Mastectomy, to have make sure margin is clean, (& because the size of it in relation to my breast size).
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@sloan15 - I am 50 as well with two kids and a husband. I am getting chemo since I had 3/12 positive nodes. I didn't really know what to expect my first treatment but have to say it went better than I thought it would. Hopefully your MO will prescribe some good meds for anti-naseous. I had Emend which worked very well. Zoran was a back up to take as needed and I didn't take it very often. The first few days after chemo I was pumped up on steroids which made me feel better but prevented me from sleeping well. I had a few days that I felt off - like I was coming down with the flu but then the next day I would feel pretty good.
So the first week following chemo is a bit unpredictable but once I was a week out from it, now I feel fine. The only side effect I have is the weird taste in my mouth.
I hope it all goes well for you! Good luck on the 17th!!!
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Re: the Neulasta/Neupogen talk . . . Does anyone think it strange that both my MO and her NP are saying I won't have Neulasta or Neupogen for the first round? I don't know why I'm worrying about this. . . maybe they're thinking I won't need it? The thing is, though, I'm a university professor, so I can't exactly avoid crowded spaces (classrooms are pretty gross, too). Maybe I just need to wait and see and hope that my white count stays high enough.
Took the first dexamethasone this morning. I was expecting it to wake me up, not make me sleepy! Zzzzzzzzz. . . .
I'm dreading tomorrow, but figure I'll be 1/6 of the way DONE.
I hope everyone has a lovely day.
kate
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Hi kids! You sound like a sharp bunch. Hope you are all doing well.
Jenphil86: In my chemo bag: hospital socks (with the little dots on the bottom to keep you from slipping), peppermints, plain crackers, hand lotion, afghan (belonged to my aunt and mother), crossword puzzle book and pencil, book and/or e-reader, lip balm, throat lozenges (my throat gets sore), cell phone (I turn the sound off), keys, driver's license. Also a small stuffed owl which my sister sent me. No purse. My chemo place has coffee, tea, ice water, snacks, hand sanitizer, kleenex, pillows, and blankets. I wear a soft long sleeved shirt which buttons in the front, no bra (a first for me), and a scarf (to cover my bald head).
Best of luck to you! Hope your chemos go as easily as mine are.
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KateB79: I did not have Neulasta after my first chemo session. One week later, they tested my blood. My immune system numbers were very low, so after the second and subsequent sessions they have been giving me the Neulasta on-body injector. It's very cool and you don't have to go back the next day for a shot. It has worked well for me. How are you feeling?0
