Starting Chemo in October 2015

Holy cow, PatRN10, that sounds awful! I'm so sorry you went through that/are still going through that. It seems particularly unfair to get to the final round of chemo and feel like you're finally done and home free, and then gett the rug pulled out from under like that.

I had been wondering about skipping Neulasta for my last couple of rounds because my last round, the bone and joint pain were a lot worse...but now I think I'll stick with it.

Wishing you a speedy recovery!

Jedrik: The neuropathy is becoming bothersome, but I haven't been in the studio much since my diagnosis so I don't know really know. Surgery first kept me out, then chemo stole all of my creativity and chemo brain makes it difficult for me to stay focused. I am going to try to get out of my rut by taking a class in February-hopefully the neuropathy will not interfere!

Jclc83: So glad your bone scan was negative! I have not had one yet, but I have my second Echo on Monday. Here's hoping for a good refraction rate!

ncsue927: good luck with your infusion Monday. Hope your SEs are minimal.

homeschool: so sorry about your cold! I hope you get over it soon.

Andraxo: Your trip to Panama sounds fantastic! I am so sorry about your SEs from the antibiotic. Was it by any chance Levofloxican? That is what my MO gave me for my trip to Italy, but I was only to take it if I got a fever. I read the SEs on the info sheet and was a bit alarmed!  I hope you are able to continue with your exercise. I am trying to get back into yoga.

MDW1967: Glad you found us too! It is so nice to have people who "get it". 

I am so looking forward to enjoying food again too!

PatRN10: I hope you are feeling better-so sorry about your hospitalization.

As for vision-I just got my reminder card that it's time for my exam. I don't know if I should go yet or wait! It sure would be great if my vision improved after chemo

Amy - yes it was Levofloxican, and I stupidly did not read up about it. Angry as myself, because I usually do that for other drugs. I've had it on hand since round 2 (first round without Neulasta) and was to take it if I had a fever, but for this trip my oncologist directed me to take it prophylactically. The muscle fatigue and joint pain is awful. Unlike anything from chemo or neulasta. Today is my third day off of it since I'm back in the US, but the symptoms are still there. At least my legs aren't edematous anymore as of this morning. I tried to run, but it was ugly. Trying not to be discouraged and hopeful this will resolve.

LoveMyVizsla - I had a weird allergic reaction 2 weeks after my first chemo and getting Neulasta (hives, dermatographia, lips and ears swollen, difficulty breathing, etc). Ended up on steroids and had to delay 2nd chemo. My oncologist consulted with other oncology specialists and 2 out of 3 of them said it was likely the Neulasta because it stays in your system for weeks. One thought it could have been the chemo, specifically Taxotere. She also consulted with an allergist/immunologist who thought it could have really been anything that I reacted to, but if exposed again I would likely have an even worse reaction so they wanted me to carry an epi-pen and an inhaler (which I have not needed and stopped carrying a couple of weeks ago). So...they would not give me neulasta again, nor try Neupogen because it's the same thing just shorter acting - said it wasn't worth the risk to see. Round two was just the TC chemo with a boatload of extra steroids (ugh!!). I did not react again thankfully, but it took 6-8 weeks to fully resolve the first reaction to where I wasn't getting anymore hives. If I reacted again, she was going to change my chemo. These last 3 rounds without Neulasta my total white count dropped to 1.2, and neutrophils to .2 I get a little freaked out, especially at work, when I know my counts are low. Always worried about infection, but so far I've been lucky.

2 rounds to go. So ready to be done chemo.

Beautiful sunny day today!

twiggy: I have Prilosec lying around from somewhere but I'm not sure it it is safe with my chemo. I'll put it on the list of things to ask.

ncsue: I'm so ready to be done with chemo, suffering a complete out-of-motivation-error, but, alas, two more cycles need to be done.

Andraxo: So cool to have an adventure like this while doing chemo and with a low WBC. I'm glad that the pesky SEs which I never knew an antibiotic could have, are slowly getting better. I'd like to read you're out and about in the snow soon.

MDW: Your recovery plan sounds absolutely amazing, I hope we both can do a lot of those things. As far as food is concerned: Sushi, going easy on the wasabi, and mild vietnamese food are two of the things I tolerate surprisingly well even during week one. I need to try indian food now.

Pat: That must have been quite the scare. Speedy recovery!

AmyBeader: I'll be keeping my fingers crossed for you.

For me it's round four / week three now: I feel next to normal but this time no eagerness to continue and get it done. Also I'm starting to worry about surgery.

So oddly, this round 3 of taxol has been easier on me than the first 2 rounds. And I even had a cold. 😩 The aches and exhaustion were quite a bit less this time. I go back to Thursdays for infusions this week instead of Tuesdays, so I have an extra 2 "good" days this week.

homeschool4us....my port is also giving me fits! About a month ago, my MO actually sent me to have an ultrasound done on it because he was scared that I had a blood clot problem that was creating the problems. Talk about scaring me to death! My actual port and catheter are completely visible in my chest/neck area, when before I had my ultrasound you couldn't see anything but my port itself. My last 2 treatments the nurse has had issues inserting the needle correctly (and that doesn't feel too good), and then when they remove the needle, blood and fluid come gushing out. My MO also had his nurse take bloodwork from my port in front of him so he could see if there were any issues taking blood from it. None were seen. I told my MO that it's almost like my body is trying to reject my port. I only have 2 treatments left so hopefully after that it really won't be an issue. I also meet with my breast surgeon for a check-up on Tuesday, so I'll be interested to see what he says about it.

Every time I go in, it's a game of "will my port give blood?" My BS talked about it when I saw him a couple weeks ago. One part could be that you are so overly hydrated during surgery that under normal circumstances, you aren't really dehydrated, but your veins are more collapsed, leaving catheter more prone to hitting the wall of the vein and preventing the blood from flowing to the port.

I've had a cold since last week and they won't let me have my chemo on Wednesday if I'm not better.  BOOOO!

Coughing, runny yucky nose, mild temp of 99 ish. ..... 

They didn't give me specific treatments to get better quicker.  Just avoid anything with NSAIDS.   Drinking water, vitamin C, taking Mucinex and cough medicine when I need to sleep better.....

Andraxo, God, I'm so sorry to hear how down you've been feeling over these recent days. It must be extremely scary to imagine that these awful effects from the antibiotic could be permanent. I'm so glad that your MO is letting you push out your infusion a bit. I'm sure the last thing you need this week is to deal with the physical and psychological difficulties of infusion on top of what you're already dealing with. I'm crossing my fingers that you'll continue to feel better as you are able to walk a bit, and that the anti-inflammatory meds will help. I hope, too, that you find a way to get to your conference, despite your infusion on Monday.

Reading folks' posts here (yours and Jedrik's) has helped me feel a little less anxious about the "no raw foods!" guidance from my nutritionist. It's kind of like all the prohibitions during pregnancy that are so overblown. No deli meats! No runny eggs or raw yolks! No raw cheese or honey! The odds are pretty tiny of getting sick from any of it. I think I'm going to ease up a bit. Not sure I can stand to go another month and a half without sushi, honestly.

I had my fifth infusion today. After all of the folks reporting difficulties with their ports, I was a little on edge, but my port performed like a champ, thankfully. I'm sorry for those who are struggling with theirs and hope things get better.

Five down, and now one to go. Although it's hard to think of so optimistically as I teeter on the precipice of the chemo hole, and know that I'm about to fall in as soon as the steroids wear off....

I talked with my MO at my pre-infusion appt about the Carboplatin. He did know about the San Antonio symposium papers, but he was reluctant to take me off the Carboplatin on the basis of the one study--in part because that study wasn't premised on the same cocktail of drugs I'm taking. We talked for a bit about why he included the Carboplatin in my therapy in the first place, and he explained there were prior studies that indicated that it improved beneficial results with HER2 + patients, in combination with the other drugs I'm on. Anyway, I was disappointed but not entirely surprised. He did note that while Carboplatin can exacerbate diarrhea (my primary argument to ask for going off of it), Perjeta is also known to have that effect, and I'm on both, so it's not clear that removing the Carboplatin would solve that issue. At any rate, he recommended that if the diarrhea persists and is severe, and if Imodium isn't offering enough relief, I can try a brief course of Cipro (antibiotic). So I have that in my back pocket for when the shenanigans begin.

Very tired tonight. Hot flashes have been coming on strong at night, waking me up--this early menopause sure is fun! Anyway, I think I'm off to bed soon. Wishing everyone a good week, or at least one that is starting to get better.

Thanks Kim and MDW I'm actually relieved to have chemo postponed a week. It will give me time to hopefully get my muscles and joint and tendons feeling bettter before being assaulted again by chemo. I'm feeling a speck better today in my legs and that is encouraging. I had labs today and saw the oncology NP. All labs were normal (red and white blood counts, renal and hepatic functions) aside from the high platelets (been that way since the October allergic reaction, but not concerning) - Yay! No trying exercise for a couple more days. They still think part of my new muscle/connective tissue symptoms could be from the Taxotere. I don't buy it, not this late. It fits the bill perfectly for toxicity from the antibiotic.

MDW - be cautious/alert for symptoms if you take Cipro. It in the same class as the antibiotic I reacted to. It's a fluorquinolone. Look up the toxic effects from it and be aware in case any pop up.

Kim - yes, on TC for 6 rounds, 2 to go. no Taxol. My last infusion is tentatively scheduled for Feb 2nd, assuming no problems after my Jan 11th #5 chemo. Ugh - Can't believe you keep having reactions in the chair during infusion - scary stuff! So happy though that you are almost done Taxol!

I'm also having so many hot flashes, worse at night. I wake up sweaty, then go back to freezing and keep cycling that way for hours. Hard to sleep for more than 2 hrs at a time, but at least I'm staying in bed resting longer than I ever have before! I'm going to get a medical marijuana tincture today to hopefully help me sleep. Might as well try it! My plastic surgeon recommended using marijuana months ago for the neurotoxic effects of chemo, but I've been OK and not sure what other symptoms it would really help me with. Apparently a local dispensary make a tincture specifically to help with sleep.

I meet with the Radiation oncologist after chemo next week to figure out my radiation plan.

Have a super week everyone! Keep fighting and healing!

xo

(excuse typos again)

Andraxo,

So glad you're feeling a bit of improvement with your legs today, and that your labs were looking good!

I tend to think you're right that what has happened for you is most likely a reaction to the antibiotics. The timing adds up, and the sudden/severity of the onset.

I do, though, wonder, if Taxotere can be a culprit in some cases. Over the past couple of weeks, I've been trying to get out and get more exercise. Nothing heavy--just walking, mostly. When I've attempted even a VERY light jog lately, though, I feel like I'm trying to pull tree stumps up out of the ground. I also took my son on an outing last week, and to get to the location, we had to walk up a short but steep hill, and my leg muscles also felt unbelievably strained by that little bit of push. With so many factors swirling around (the chemo drugs, the antibody drugs, Neulasta, ordinary fatigue), I won't even try to figure out what's causing the leg strain. I'm just hoping that after my final round, it goes away. The only thing I'll stay on after chemo stops is the Herceptin, until October.

Thank you for the heads up on the Cipro! I haven't taken in yet. At one point, when I wasn't on the Neulasta yet, my MO prescribed it prophylactically. I declined to take it because I wasn't showing any signs of fever/infection, and I'm averse to taking antibiotics unless it's totally necessary. I won't take the Cipro for diarrhea unless things get more severe or the Imodium stops helping, and I'll educate myself about the side effects first in any case.

My husband has tried a medical marijuana tincture for sleep and has had pretty good results with it. It's pretty remarkable how advanced the science with cannabis is getting. I've always been averse to any kind of marijuana because it makes me super paranoid and introverted. But I've tried a high CBD oil where the psychoactive effects were completely null--I felt a tiny bit spacey, but only briefly. No paranoia or inwardness at all. I hope you find something that works for you!

--Meara

MDW, I don't know about anyone else, but Ativan is a must for me at night, regardless if I've just had my treatment or not. Kind of scary, as I don't want to have a dependency on it - I tried to go off it last week for 3 nights, had no problems falling asleep, but couldn't stay asleep. That combined with the stupid hot flashes made me give in and start taking it again, which I will continue until treatment is finished (including rads). I need my sleep right now!

I am very curious about this medical marijuana tincture - is it legal where you ladies live? I am in British Columbia, Canada, and while it's grown here aplenty, it all gets exported to Washington state where it is legal. I wouldn't know where to go to get it, although we do have many shops in my town as well as Vancouver with that green leaf on it - I would feel like a fish out of water if I stepped into a place like that!!!

Also MDW, the reactions I've been having are "normal" - I guess for the nurses, certainly not for me! I was fine my first Taxol, but my 2nd and 3rd reacted. It's very temporary and not concerning, they just need to get that anti-histamine cocktail right for me. But yes, one more Taxol - I've done 4 AC, and will finish 4 Taxols on January 18. I head back to work Feb. 1 and so looking forward to it. My rads start mid-February, 16 treatments, so will be done early March.

Curious if anyone has had or considering an oompharectomy? i am starting to think about hormonal treatments and wondering if this is an option also.

Kim

MDW1967, I met with the oncology PA today and she outlined three long term hormonal therapy options, although I won't know which the oncologist will recommend until the end of chemo. I want to do more research about all of them before making any decisions.

I am triple positive, and it seems like the options are:

1. Tamoxifen for 10 years

2. Ovarian suppression (by monthly injection) and an AI inhibitor (like Arimidex)

3. Oopherectomy and an AI inhibitor.

I don't know the specific length of treatment with AI inhibitors or other details at this point. It seems like every treatment option has possible benefits and equally likely side effects and drawbacks. When I meet with the oncologist, I think my first questions will be 1) What is the best option for least chance of recurrence and 2) What is the best option for quality of life and least egregious side effects. And then I'll do my own research and make a decision from there.

Kimmer33, I also take Ativan many nights to help with sleep and with queasiness (I haven't had real nausea). It seems to help me for sleep more than Ambien, which I don't like taking. I don't think I've been taking it long enough or regularly enough to worry about weaning off it when that time comes yet, but I do think sleep is important enough to take it pretty regularly if it helps me through this period. I hadn't considered that my temperature control issues (hot and cold all night) could be from "chemopause," but that makes total sense. My hormones are so out of whack.

Re: medical marijuana...it's not legal in this state, but I do have some and think it does help with a lot of side effects. I tend to use it in the first week and a half or so after treatment and then not so much in the intervening weeks. The strain I have is very mellow and is more of a relaxing, calming effect than a stoned one. My friend also made me some infused clarified butter that I put on rice when I was having really horrible diarrhea and could only eat rice and bananas. I know the legality of it is an issue for many people, but I'm comfortable with it for this kind of therapeutic use.

Hope everyone has a good evening!

I haven't done any genetic testing yet, so I don't know if an oopherectomy would be recommended for me. Is that usually only if you are ER positive? I'm delusional with my age, treatment, and stage of cancer, but I would really love a chance at having another baby. I know losing the baby in October had nothing to do with cancer, but it was just another awful thing in the midst of all of this and then if cancer and treatments take away any chance of having another, that really depresses me. However, if they told me I had a high chance of ovarian cancer I would do the oopherectomy.