Anyone starting Chemo July 2016?

Well, I made it through my first infusion of TC!

Full disclosure: I fasted 48h before and 24h following the infusion.

They first gave me a bunch of steroids and Emend. Then they dripped the Taxotere slow and I only had a tiny reaction which they gave me some more steroids for. My husband, who was there for moral support I guess, got a migraine from the drip machine always beeping, and passed out in a migraine-coma on the little bench next to my chair for the entirety of the session. I felt tired and full of drugs at the end. They told me to go home and take any of my nausea medicine if I needed it, which I did within hours. I was drinking water but it kept trying to come right back up. I slammed down a bunch of Zofran, Ativan, and Phenergan that night and dreamed of wolves rampaging through my kitchen, dragging rotting carcasses. I found out later that the husband had forgotten to take out the trash, and it was smelly. Next time I'll have to insist that the kitchen is scrubbed the first couple of days - the slightest whiff sends my imagination on wild trips.

Days 1 and 2 following infusion: unrelenting nausea, terrible stomach cramps, extreme muscle weakness and laziness, diarrhea, with nausea only relieved by drug comas. Numb mouth, which I attribute to nausea meds - I was doped up. Tingling teeth, and later, a toothache in my 'bad' tooth. Tingling fingernails, which went away when I got some B vitamins in. Extreme fatigue. Tingling toenails. Felt like they'd fall off. I dutifully drank water and ate lightly when I could.

Day 1 following infusion: Neulasta went in that evening. It beeped and clicked for a while. Once it was done, I threw the injector away. That was easy.

Day 3 - Great improvement. Muscle weakness fading. Neulasta kicked in and gave me a low grade fever and quickened heartbeat, like a little case of the flu, but nothing else of note. I made sure my temperature didn't go over 100 and felt better by the next day. I had been taking Claritin, experienced slight back achiness but nothing too crazy.

Day 4 - At this point I probably should have started lightening up on the anti-nausea meds but didn't. Next time I will, and see how things go.

Day 5 - Lightened up on nausea meds. Felt almost normal. Fingers and toes returned to normal. Only lingering side effect is the diarrhea.

Day 6 - Pretty normal. Getting some appetite back. Still a little diarrhea. Taking only Ativan for occasional queasiness.

Day 7 - Normal. Went in for blood work, got the expected results of my bloods being a little down, confined to house until Monday. Lost 5 pounds on this cycle but expect to gain them all back presently. Not sleeping well. I'm probably not going to sleep well without drugs for a long while now.

The plan: 48h/24h fast again next cycle, do everything else just about the same but try easing up on Zofran a day or two earlier and see how things shake out. Zofran makes me feel kinda icky but it does quell nausea.

HI everyone and Marlenelin I just had my first cycle last week and still in recovery mode. That day all went surprising well but felt off the next day. I got the neulasta next day felt better but following day started itching and started having stomach pain. Like I had fire in me! Then day later SEVERE stomach cramps, pain w constipation. Couldn't pass a BM or gas it made me fall over in pain and start sweating. Dr is testing my stool bc he's concerned about me being on clindamyicin bf treatment that it can cause infection cdiff. But I read your post and see I'm not the only one! Is it the chemo or the neulasta???? Can't go through this again!! It woke me up in middle of nite w intense pain too!

Also I just by chance talked to another onco dr in same office and we went over my health history in conversation and I ended up asking him does he recommend me doing 6 cycles of treatment like my other dr says. And he says no, to do only 4 cycles since my nodes were clear and the tumor was 4mm TN/high grade. He's been an onco dr for 36 years and feels it's too long. Since my treatment is based in a new study from last year Standford recommended 4-6 cycles.

What do I do??? Which dr do I go by?? Wolud appreciate some input from you ladies.

In regards to the Neulasta, the night it went in, I had some wicked stomach cramps (felt like gas pain) and diarrhea which lasted the rest of the week. Today is Saturday and the diarrhea has finally let up mostly. My mom dragged me to McDonald's this morning to try and get me to eat something. I ate the innards of an Egg McMuffin and it triggered a small episode of diarrhea, but then later today when I ate some crackers I was fine.

I never felt any of the horrible bone pains or frightening side effects that others have reported. Just that one weird day where I felt a little strange and had some fever which the nurse said was probably caused by Neulasta. But I can't say if the GI discomfort was the chemo or the Neulasta, really. Could be both.

Meow0369,

I'm triple negative like you, but a little different in that I'm getting chemo first, then surgery. There are so many chemo names, it's confusing. I'm taking a combo of Doxorubicin (the red stuff), plus Cytoxan the first 4 rounds, then I'll move onto 4 rounds of Taxol. I have a TNBC friend who has been through chemo twice. The second time she got the red stuff and swears that cured her, although it's tough on you physically. Our type of tumor is so serious, my instinct is hit it with all you have, which feels like more is better, hit any straggler cancer cells out there, but I'm no medical professional. Please keep me posted on what you discover so we can compare.

Yodez75, good luck with your second treatment. My 2nd is this Friday and I'm dreading it. My fear is the SE's are cumulative and I feel even worse. Hope that isn't the case for either of us

Hee! I shaved my head. I had chopped it into a pixie cut a few weeks ago, knowing I'd lose it on the Taxotere, but my hair was itching and beginning to fall out in clumps and shed everywhere and I saw bald patches on my head. So yesterday I took the clippers out into the yard and ended it.

As it turns out, I look pretty good bald - kinda like Natalie Portman in V for Vendetta - I was greatly amused, took like 100 selfies and immediately went out with my mom and husband for dinner and ice cream sans wig. I didn't think of it at the time, but I should have put on some dramatic makeup, that would have looked awesome.

But today my mom was having none of that whole spacemonkey look and made me wear my wig AND my boobs when I took her out shopping this afternoon. At least wigs feel better on a bald noggin. False boobs make no sense to me, though.

I went jogging bald in the morning wearing my pink tank top. Mosquitoes ATE MY HEAD UP. Turns out that wearing a cap or scarf is a good idea sometimes.

Another infusion a week from tomorrow. I really hope the SEs don't get too bad, but my understanding is that they build up and everyone is doing a great job reminding me that I'm going to get sicker and sicker. I hate thinking about that. I only have 3 more treatments to go. I hope I can do this and stay alive and recover so I can get my hysto and sorta-recon (scar cleanup) and then I get my port out and I hope that I am DONE with treatment. It'll be winter and 2016 will be gone by then and I will have lost an entire summer of my life to stupid dumb breast cancer and then I get to spend 284702347029374274 months in the gym and drinking gross protein shakes trying to build some muscle mass back and losing my big steroid belly. ARGH.

Crawfordsmommy,

I love the wig and fake boobs line. I keep my boobs until my chemo is done, but I relate to the wig. I shaved my head yesterday, and I wore my wig to work today. The wig is pretty itchy and uncomfortable, so outside work I'm embracing the bald. I still have a little fuzz, so I look like Ann Hathaway in Le Miserable right now. Tomorrow is A/C chemo round 2. I keep hearing sideeffects are cumulative, so I'm not looking forward to the weekend. Last time, Sunday was the low point.

Hi All, i am new posting here. I first joined the community by posting under June surgery. Got my BMX all taken care of, and I still have tissue expanders, but now I feel that chemotherapy is taking over. I decided to take a pick at other communities when I found this one. Thank you for sharing your experiences here.

My first infusion of AC was 7/18 and I share regimen of 4 rounds every 3 weeks; then I will have 12 weeks of Taxol. I only suffered from nausea the first days and spent the rest of the time feeling back to my normal . I took Emend tripack pill 1 hour before the treatment, and I was sent home with extra nausea medication to be taken " as needed" every 4 to 6 hours. I am not a big fan of medication, so I really tried to take it as needed. The problem was that by the time I was in need of the medication, it was too late to get rid of the symptoms. I will probably change my approach on this next upcoming infusion on Monday! I was told to take it every 4 or 6 hours regardless the symptoms. Anyone taking meds as preventive instead of as needed?

As per the fluid struggles, my suggestion is to drink coconut water. Costco sells Zico and Vita, but grocery stores now offer several other brands. Coconut water is a natural replacement of electrolytes and it's better than Gatorade ( meaning fewer calories!)

Is anyone going for radiation after chemo? Still debating over the need of it. My MO says I am considered a board line since margins were clean and tumor was not above 5cm. However, being triple negative put me on high risk of recurrence . I see some of you are TNBC. Any thoughts?

Gentle hugs and good luck to you all

Clauclau,

I'm with xxyzed - take the meds regularly, on the nose time wise, as what's making you feel better is the meds, and it's not worth the risk to wait and see. You'll feel too crappy and maybe vomit. For your choice, I'd lean towards aggressive if you're healthy. I may be able to get away with just a left mastectomy where my TNBC is, but I think I'm getting a double mastectomy - I don't ever want to go through chemo again. I had round 2 on my A/C today. So far, so good. I rewarded myself with shoe shopping, and I bought a bunch of flats because I hear Taxol makes high heels really uncomfortable. Oddly, the steroids I'm on have caused my feet to swell - I'm at least a 1/2 bigger.

Dear Xxyzed and ResoluteinAtl,

Thank you for your comments. I will follow your advice to take the medication as a preventive tool next time.

I got my blood test today for my second round of chemo and it came back as my white blood cells are too low. I called the doctor's office to ask what I could do to improve this numbers, and surprisingly I heard that "nothing can be done". However, they are expecting me to go back on Monday for another count.... and I am just thinking "really?" Has anyone been turned down due to low blood count? Anyone with a nutrition advice on how to improve mu WBC between now and MOnday morning? I feel so good and I have been eating so good that I can't believe my blood count is NOT good... I am a little disappointed with the whole thing. On top of that, my hair officially fell off today. I am not planning on shaving it. I am now using a chemo beanie at home ( and to sleep) and I got a wig .

I will send a picture of me with the wig later...when I have my cellphone nearby. By the way, I am 45 y.o. Don't know if it's considered young or old ( definitely not elderly ! LOL)

Gentle hugs to all,

Regarding nausea medication - just take it on schedule! Once the nausea gets rolling, it will put a kink in your day! Don't think "I'll take it if I need it". It's better to take the medicine even if you don't think you need it at the moment. I'm one of those who would rather just take the medicine as a preventative, than feel crummy all day. Chemo nausea is a special, horrible kind of nausea.

Clauclau... for WBCs... Sorry, you can't do anything about those except wait! My WBCs got so low last week, so weird because I felt fine! - but they were great this week. It's a side effect of the chemo. Chemo pulps your blood cells. I think that's why so many of us get WBC-boosters even if we hate them. With Neulasta, your counts will drop off and then bounce right back up so you spend less time being vulnerable to infection. Otherwise you just have to wait a while for them to come back naturally and then yeah, they start to delay your chemo treatments and you get off schedule. I'm fortunate and didn't have too many side effects with Neulasta. I had some, but they were bearable. You might want to ask your doctor about it for the next round.

Deevee903 and Crowfordsmommy,

Thank you for your thoughts. As promised, here is a picture of my mom and I yesterday before leaving the hair salon... Yeap, this is my wig!

I will ask my doctor next week about Neulasta or Neupogen. Thank you for the names and for letting me know there is a solution for slow recovery people like myself ... LOL

I will assume that my MO is trying to get to know me first and hopefully we will work something on in order to avoid delaying the treatment.

I spoke with a nutritionist friend of a friend yesterday and she gave me a list of things to do between yesterday and Monday morning.

Here it is: http://renegadehealth.com/blog/2013/12/30/5-ways-t...

I will come back on Monday to let you know if I was able to have the 2nd round or if it got delayed.

Thanks girls and have a great rest of the weekend!

Thank you, Crawfordsmommy,

Yes, it is. I am still getting used to my look with chunks of hair piling up here and there. So wig it is for me.

I will ask for these 2 medications on Monday and hopefully they will not delay my treatment. I was told to ask for a reduced dosage of the chemo when Neutropenia is the case. Any of you heard about it? Here is the link:

https://www.oncolink.org/frequently-asked-question...

https://www.oncolink.org/frequently-asked-questions/cancer-treatments/chemotherapy/improving-white-blood-cell-count-during-chemotherapy

Gorgeous wig. Reduced doses and delays in treatment are never preferable as the studies they base treatment decisions on have set protocols. Instead they normally introduce neupogen or neulasta to improve the blood counts and then delay treatment if still required. Dose reductions are normally a last resort

Hello

I ended up in hospital for 5 nights with round one of chemo with neutropenia

Round two my dosage was lowered by 10% and I was given an injection G CSF 24 hours after infusion.

I asked and asked if by doing this would it be detrimental to my treatment as my cancer is so aggressive. I was told it was all good and that they do have room to adjusted doses even more.

Thankfully I accepted this course as I am heaps better than last time. Although it has been a very hard week I managed to avoid hospital.

Take care.

Helen