Starting Chemo May 2016

Hello lovelies --

Responding to a few items I see have come up in folks' posts... I'm at day 7 post 1st round of TC. I used Penguin Cold Caps and my hair is in good shape now (it's early anyway). Days 3 & 4 post tx were my worst days -- probably the worst pain I've ever been in. Felt like the worst flu ever (bone, joint, muscle pain), plus period cramps (but wasn't), and sharp-shooty gas pains combined -- only all over my entire body. Hellish. I probably didn't help matters because I wouldn't take anything for it -- I didn't want to throw more chemicals in there for my poor liver and kidneys to process. I finally did take a tiny laxative pill (pink Dulcolax) on Day 4, and woke up feeling much better Day 5. Not sure if related, but maybe.

Day 3 I started feeling the icky-mouth -- that feeling of a layer of dead cells. And very tender -- bumped the roof of my mouth with a toothbrush and ended up leaving a big sore there (when it wouldn't have, ordinarily). I did start the swishing with baking soda/salt/water combo, and that made my mouth feel better. I also asked for the "magic mouthwash" prescription -- which has to be made at a compounding pharmacy -- but haven't yet gotten the call that it's ready. I did order a Water Pik to help with flossing, since my mouth is so tender it actually can be painful to brush.

I got a PICC line, not a port. An oncologist said a port would be "overkill" for my short, 4 round tx. The PICC is just a catheter left in my arm -- which means special precautions are required around showering (can't get it wet). I regularly go for "less is more", so didn't even research it when I had the option. In retrospect, I might have given the port more consideration because I think the risk of infection is probably lower the longer it's left in. Hopefully, my PICC will come out after 9 weeks uneventfully. In the meantime, it needs weekly dressing changes, which correspond to my weekly blood checks.

When I went in yesterday on Day 6 for the PICC maintenance and blood check, my WBCs had crashed severely and I ended up on a Neupogen treatment for 3 days. Will get checked again Friday to see if 3 shots are enough. Pretty scary --- if the blood doesn't respond, chemo can't proceed and the whole timeline expands. And, if I were to contract an infection, I'd end up in the hospital on an antibiotic drip; the last place I want to be.

Last thing for now: someone said her oncologist didn't support cold capping. I have to say, the hardest part of this experience has been the very poor communication between the oncologists and their staff and me/the patient. My MO was not supportive either, but I was adamant -- and she really wasn't supportive of anything I wanted that was different than her usual schtick (e.g. an integrative approach). She was very dismissive and frankly... condescending. I started to say perjorative, and that may also be true. I am concerned about continuing to work with her; in my work, I am accustomed to making important decisions, and asking questions to get information that I need to make those decisions. It is literally stunning to be treated so carelessly, maybe especially given my professional context. But I think what I do for work shouldn't matter -- the MO should treat everyone as though they are actually capable of participating in and making decisions about their care. And, maybe this kind of idealism sets me up for a life of frustration. Maybe... but it certainly does here. If you can believe it, I ended up with a case manager from my insurer who actually suggested and recommended that I file a grievance. That was a surprise (I would think she'd try to discourage it!)

Anyhow, thank you all for sharing how things are going; it is a comfort to hear what your experiences are, and know we are all inching our way down the road to recovery....

xx

Saccat, I like your picture, gonna try to add a pic of one of my cats to my posts. thanks for the good descriptions of your SE symptoms. My son's 6th grade grad is two days after my second dose, hoping to be able to make it. I will pray and we shall see. Blessings, and here we go on this extreme Men-In-Black kind of witness protection program called chemotherapy.

hi victoryak I got my port placed yesterday. After the lumpecty surgery, and axillary dissection (12 nodes out) you can NEVER have torniquite or blood pressure cuff on that arm again for risk of lymphedema. My past experience w/ivs (2 carpal tunnel surgeries, c section) took 2 tries for IV and very painful to do the port placement, it took 5 tries to get IV and I'm grateful for a port not have to dread enduring that every week. Rn says my veins tend to clamp down which is part of problem

I am thinking of you! Its gr8. To be encouraged by other chemo-sabes thru this crazy mess. Blessings

yea praying for you & thinking of you KQHill

I had my first standard chemo today. I started receiving Herceptin and Perjeta since January of this year. Though the tumor shrunk from being close to 3 cm to 1.9 cm, the oncologist and breast surgeon wanted to me to have clear margins after surgery.

I used to be part of a clinical trial and had been dropped like a hot potato. The premeds that I took during the clinical trial were no longer the same for the standard treatment. I guess I am on the economy coach now.

Nevertheless, the seven-hour long infusion which started at 10:00 AM was comparable to my experience when I received Herceptin and Perjeta. I have a port so the infusion was convenient and manageable.

I came home a little bit groggy because of the Ativan. I felt tired but I couldn't sleep so I took a sleeping pill and and another Ativan. This is Day 1 and I feel pretty normal. I will update again on my Day 2.

By the way, I have been drinking lots of water -Essentia- which really tastes good and has a 9.5 ph level. Tea tastes bitter now.

I am HER2 positive, Stage 2, and undergoing neoadjuvant treatment (H+P since January to April) and TCHP (May-September). I will finish Herceptin till January next year.

Thanks dear OAJ2013; I am on a double dose of Claritin, as well as Tylenol. Fingers crossed for a better night.

And, you're beautiful. This too, shall pass. xx

Please I need information about breast cancer treatment in USA, my wife who is 34 years old have benn diagnosed with breast cancer histology grade 3. The tumor is about 1cm 2 milimeters. I'm not rich but I can afford a good treatment which is not very expensive. I live in Peru, SouthAmerica. Please if you have information about a good hospital send me the information. I'm desperate, The treatments in my country are not very good. Pls

HI kids -- just an update on the Neupogen fun; had my third shot yesterday and blood tested today. My WBCs are now way above normal; nurse says that's typical after the Neupogen, and they'll normalize soon. I was concerned about the potential for high WBCs indicating infection, but the nurse said to just monitor my temperature and make sure it's not "sustained" over 100.4 degrees. Strangely precise.... but in that event, time to call my doc.

Unfortunately I woke up with what feels to be a head cold Fingers crossed for a good week next week, before round 2!

Happy Friday --

Hi All- Diagnosed 5/5/16: Er+ HER2+ and BRCA2 +. 44 years old. Chest port placed May 6th, stared TCHP May 9th. First cycle was long, but Benedryl gave me a nice snooze through some of it. Was tired first couple of days and took naps, SE included diarrhea and acid reflux. Onc prescribed protonix and I took over the counter anti-diarrhea proactively so I could venture out and eat more than bananas and bread. I also noticed that by day 4-5 I had not eaten protein (mainly because I was afraid it would not sit well with me) and boy what a difference once I did. Had me some baked chicken and immediately felt like a new woman! Thankfully, no Nausea. Allergy symptoms started day 8, runny nose and teary eyes. The nurses had recommended Claritin when I was undergoing my first treatment. I took it for a few days, but stopped as the oncologist had said if I didn't think I needed it, I didn't have to take. Started taking again, but my eyes still won't stop tearing. I have 5 more cycles and will then undergo bilateral mastectomy and ovaries removed. Need to find a good OB-GYN and determine if ovary removal is sufficient or if I need to consider fallopian tube etc. My Aunt was diagnosed at 55 with rare fallopian tube cancer... Lots of information to take in and consider, taking it one day at a time. And if you get a chance watch the Facebook video of the girl and the Star Wars Chewbaka mask-, made me laugh so hard, I'm keeping it as my daily watch video. Laughter is great medicine right! Good night all.

Hi SacCat & everybody, first chemo on Tuesday. counting down to Dday on any hiding-out cancer.

gonna nuke them all!!

Hi all,

I'm finally posting here. I have been diagnosed with IDC with a node involvement. Had lumpectomy last month and all set to start chemo tomorrow. I have a little less than 2 year old who caught a bad virus of cold and flu from his daycare since Friday and I now started feeling the symptoms of flu - sore throat, heavy head, congestion etc.

We have to leave our son with my parents and he is so clingy, and now I'm not sure my treatment starts tomorrow owing to my symptoms. Feeling terrible either way.

MemberNow, sorry to hear about it. You probably should wait till you better before starting. I understand how you feel. I think waiting is the worst. When you start you feel more in a control. I had my 3 ( out of 12)Taxols weekly and going for #4 on Tuesday. It sounds crazy but I can't wait to go and get my next chemo... I guess it's because it is makes me one more step forward toward the end..I understand you probably emotional wreck but stay strong. Talking here helps. Knowing there are people who are in the same boat and understand to.

Stay strong!

I had my first AC chemo on 5/19. The infusion itself was uneventful. I asked my doc for the bare minimum of steroids in my IV and he said that was fine. He did not prescribe any oral steroids because I didn't want them. Other than that, I think my protocol is standard for ACT. I get one infusion every other week of AC (4 total) then 4 Taxol (one every other week).

I felt fine the first few hours after the infusion. About 4 hours after arriving home I felt very tired and nauseated. Large bags appeared under my eyes. My leg muscles ached so I used a heating pad, which helped. I went on a walk and took one of the three different anti nausea meds I have. Woke up in the night and nausea was gone. My hands and feet felt swollen and tingly. By morning that SE was gone too.

5/20 The day after infusion I felt very tired. I slept a lot. Had my neulasta injection at 4pm. She did it in my stomach and for some reason my blood pressure got really low and I thought I was going to faint. Laid down and they gave me fluids through my port. Was fine after 10 minutes. I've been taking Claritin and haven't had bone pain.

5/21 I woke up feeling great. Popped an anti nausea med and hit the gym. I was tired towards the end but did my normal workout, which is very strenuous. I took another anti nausea med when I got home. I think it made me tired. I napped and watched tv. Went to bed at 9pm. I've had no trouble sleeping. Possibly because of very low dose steroids.

5/22 I again woke up feeling pretty close to normal. Hit the gym with my standard workout. Not taking any anti nausea meds and I feel less tired today

So overall this has been much easier than I anticipated. Who knows what round two will bring...