TCHP Ladies Late 2014 / Early 2015

MaryJC

hi sugar cakes- was just reading about bruising easily being caused by chemo/blood platelets counts being low. It also mentions red urine! See link below..

http://m.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/chemotherapy/understandingchemotherapyaguideforpatientsandfamilies/understanding-chemotherapy-common-side-effects-bleeding-infection-anemia

MaryJC

well.... Onc called me in for labs to check low platelets. Thank God, labs are perfect! Said the fish shaped bruise looks abnormal lol. In reviewing we concluded its from the iv which I forgot about. If u notice the lil red dot that looks like the fish's food is where iv was. Along with the beautiful weather in NYC she was efficient enuf to order all labs so when I go Wednesday for chemo one less thing to do!

Sugar Cakes are u into or open to supplements? I use papaya leaf extract. My onc knows. We talked about it today. I believe that's what's keeping my labs good. Since you're having the red urine and other brusing, maybe consider. I don't just take anything w/out researching clinically. Sloan Kettering did study on it proving it shrinks tumors and increases blood counts. I also had minimal n manageable SE. Bald still but great everywhere else lol.

loriekg

DaisyQ—no, I haven't met with RO either. When I spoke with the MO assistant on Friday, I asked her about needing radiation. She said probably not, with me choosing mx.

"Walking into a punch"—that is the perfect way to describe this!! :

MaryJC

I'm sitting thru cycle 2 as I type. My nurse said this is a 'chemo burn'. They all say it looks so abnormal and the sad part is that its healing lol. It doesn't bother me as much as it does them. Heck look at all the other stuff we have to deal with. That's low on radar for me. Anyhoo nurse said its from chemo leaking out of the IV. Another theory that makes sense. Oh well as long as this process has progress n not interrupted. I pray everyone else is doing well and managing symptoms with more eas

CassieCat

Ah, that does make sense. I had that happen after round 4. That vein is still healing but looks pretty good. I don't let anyone use it yet, though. Good luck with round 2, Mary.

SugarCakes

Hope the infusion is going well, MaryJC.  That's exactly what they said about my bruise / rash.  A reaction to the taxotere to be exact.  My doctor and nurses didn't seem at all concerned, however!  I find it interesting that you and I (women of color) are the only ones (at least on this thread) that have experienced this.  My reaction is on my left arm from the first infusion.  I have not had the same happen on my right arm from the 2nd infusion, but over the last couple of days my right arm veins near the IV spot have gotten sore.  Does that make sense?  Sore veins?  Yes, that is exactly what it feels like.  Will be interesting to see which arm / vein they go for on Monday with infusion no. 3.

SugarCakes

Ha!  Spoke too soon. I see Cassie had it happen as well with infusion no. 4

MaryJC

Thanks Sugar Cakes! When is your next cycle and which round will it be for you? Other then being the shspe of a large fish, I suppose it does look like spillage. Ours are both oblong and along a vein line.

Hey Cassie Cat did yours have the same features, do u have a pic to post?

I got outta there early bec the Herceptin was only 30 mins. Onc said first was 90 to monitor for reactions. With labs done Monday, shorter Herceptin I femt great getting outta there! Would have been even shorter but other variables caused delays here n there. Thank God round 2 done. Next one and I'm half way complete! Follicles get ready!

I'm good with my baldie too! Took pics and thought- WOW these are so pretty! I've always been told -starting with my mom, that I have big/pretty eyes. Never noticed until now. Never noticed the natural arch in my brows all this time was paying have them shaped. All along, they're already arched. There are blessings in a journey once we accept and decide to persevere thru it! My lil one said he likes my head too. He kissed it when sore. My sweet bean

CassieCat

I was trying to find a picture of my arm. I only have one, and it was taken during treatments as the irritation started happening. It never got as dark or as big as what you ladies have shared.

MaryJC

Hey Cassie Cat- thanks for the pic! Altho not as big as mine and Sugar Cakes, I do see the spillages here in there. Perhaps you have better veins then us. I know mine are thin n roll. The nurse had to put in my hand this week. Ok to get blood but still a struggle. Sitting thru 3 hours of toxins going in a diff story prolly. We'll see if it happens again. She said it shouldn't.

SugarCakes

MaryJC, I have my third infusion on Monday. As with the last one, I am so ready to go! My first infusion took 5 hours but I was there for 8 hours total. My second infusion took 3.5 hours, but I was there for nearly 6 hours. They should be better prepared and organized this time; so I'm hoping for less than five hours total on Monday.

CassieCat

MaryJC, I do have very good veins, apparently. Lucky, I guess.

SugarCakes, good luck Monday. I remember that antsy feeling! After Monday you'll have done half your chemo - woo hoo!

MaryJC

omg yes! I'm a lil jealous lol. Wish I haf 3 down but feel good about my 2 so far. Works out I have 2 in April. So after those I'll feel like I'm in home stretch.

Tell me about it with the long day!!! What's up with that? My first was longer than my second session. But the second should have been much shorter bec I haf my labs done earlier. There are other variables that can make the day longer I've learned. So not sure if making the trip in for labs makes it any more efficient.

Btw how long are you ladies scheduled for Herceptin? I'm so embarrassed to say I have a year! At least that's only 30 mins but Jeez

SugarCakes

Anyone else swing from hot to cold throughout the night

DaisyQ

Yes! My infusion days were so long too. Labs, MO appointment, then the actual infusion. Easily 6 hours every time with the longest being 8 hours. Very tiring.

MaryJC: Congrats on round 2! When I am done I will have had Herceptin for a full year--it is my understanding that is the protocol for us HER2+ women. This Tuesday I have my 4th Herceptin only treatment, and it is much faster. My infusion takes an hour (that's after labs and waiting for the pharmacy to prep the chemo). I see many of the same people every three weeks so it gives us enough time to visit.

SugarCakes: I had so many problems with body temp regulation--especially the first 5 days after TCHP. I felt like I was sweating out the toxins. Then I would get really, really chilly. I found a sleeping cap helped the chills, but the hot sweats persisted after each treatment. I also felt like I smelled different. I read somewhere on this board that it might be Carboplatin?

Good luck on Monday! The half-way point is a big boost. MaryJC, you'll be there in a few weeks too.

IndyGal35

SugarCakes:  I just got my first dose of TCHP on March 10, and my temperature has bounced around a lot too.  I will toggle between cold chills and sweats. 

So far, day 3 (post-chemo) was the hardest.  I had a horrible sore throat (mucositis) with a bad backache, chills, some nausea, fatigue, and heavy chemo fog.  I can still taste a hint of sweet and salty foods, but my sense of taste is very muted.  It feels like my food just sticks in my ribs, but I'm learning to eat slow, small bites when I can.  I rested a lot yesterday, and that helped.  It's hard to work and try to maintain the most normal life possible while in treatment, but a friend reminded me that there is no award for Most Hours Worked During Chemo.  This made me feel better.

I'm glad to find this thread.  I have 5 treatments left before a double mastectomy, radiation, reconstruction, and a hysterectomy.  It will be a long road, but my physicians say that this is very curable, and I am hanging in there!

Moderators

We're all here for you! ((((hugs))))

Mardea15

Indygal35, Sorry you had to join this club but you'll find a lot off support on this site. I had most of the symptoms you mentioned after the first chemo but found they were less pronounced after the 2nd one. After tomorrow I'll find what the 3rd will bring. Can be different for each person, & can also be different with each cycle as I've found to be the case so far.

I too, bounce around with hot & cold every night. Even with an overhead fan running all night I get too hot & have to throw off the covers & then get cold & have to pull them back on. I find that not wearing a cap at night keeps me from having to do that as often.

I've also had more problems with diarrhea & have had it off & on throughout this entire 3 weeks between my last chemo (2nd) & 3rd tomorrow, with problems again today. I'm sure it's related to eating a salad & some other raw food a couple days ago - but I was craving it, so ate it & am now suffering the consequences! I get really tired of eating food I can't taste!

MaryJC, I also have herceptin for a year as that is the standard protocol for Her 2+ treatment. Seems like a long time looking forward, but when I look back & see that I'm already at my third chemo tomorrow, then it doesn't seem as long.

SugarCakes, good luck with your third chemo today! I'm looking forward to mine tomorrow.

MaryJC

thank you ladies and mods for the encouragement!

yes Im seeing it is standard for HER2+ well I won't complain bec not too long ago there was little targeted therapy. At least it's not chemo

IndyGal35

I've noticed a lot of bone pain in the past 2 days too.  I am 6 days post-chemo now, so I'm wondering if it is my marrow getting angry.  It's not the worst pain that I've ever felt by far, but it's a constant ache in my mid and lower back as well as my thighs.  It's just enough to make it uncomfortable to sleep.

I'm still getting super bloated after the tiniest of meals, but at least I am not feeling nauseous anymore.

I'll take this over the nausea any day.

Mardea15

IndyGal35, I take a Claritin & one Aleve every day for one week starting the day of the Neulasta shot. It works pretty well for bone pain & would be much worse without it. My MO told me to take those & additional pain med if I need it. I found I have to take an additional pain pill at least once during that week as it just won't be enough all the time. My MO gave me an Rx for oxycodone & it works well but I don't like to take it any more than absolutely necessary. I only take one because it tends to make me nauseated & then I have to add Zofran for the nausea, and Senna-S for constipation caused by both oxy & Zofran! It's a constant dance of taking meds that work but than having to deal with the side effects of those meds in addition to side effects from chemo & Neulasta shots.

I get my next Neulasta shot tomorrow so I'll see how it goes this time.

I just had my 3rd chemo today.Yeah! Only 3 more to go! Fortunately have had no problems today so far but I just got done a couple hours ago. This time they added IV Pepcid to try & prevent the severe heart burn that I have gotten by end of Day of Chemo both other times.Has anyone else received this? And if so, did it help? I'll let you all know if it works for me. I'm already on Omeprazole every day but that & Tums doesn't seem to take care of heart burn for me on day/night after chemo. I also use a heating pad on my upper back & eventually the combo of all will work but am trying to avoid this altogether if possible.

Hope everyone is having a good day with minimal or no side effects today! One day at a time...sometimes one hour at a time! Hugs to all!

CassieCat

IndyGal, I had the worst bone pain during my first cycle, after the Neulasta shot. Round 2 was pretty bad too, but it got better after that. I don't think I had much if any pain at all after Neulasta for the last couple of rounds.

Mardea, I hope the IV Pepcid helps. It's worth a try! For me, omeprazole was enough to manage the heartburn.

SugarCakes

Hey ladies. My 3rd infusion went well yesterday. I felt some effects sooner but they aren't bad. In fact, if I keep myself busy and distracted I don't really notice them. Had my neulasta shot today. I also had horrible back pain the first cycle, but the second seemed without any major neulasta side effect. I'm hoping for the same this cycle.

MO said he will decide with next infusion if we stop with the 4 or do all 6! Tumor has shrunk to almost nothing. Yeaaa!!! For only 4 chemos, possibly. Boooo! For having to face the surgery decision sooner.

MO said no scans or MRIs from this point. I didn't want to "debate" with him, so I will cross that bridge later with him or the breast surgeon, but I was hoping for an MRI to help me make the surgery decision!

As for my hot and cold nights, MO said its the onset of menopause. Yes, the chemo may speed that up, but I think he is minimizing the chemos cause. Nothing for me to take to help. I'm in the markets for a not as warm blanket. I always get hot first then I'm fighting the extremes. Maybe I can avoid getting too hot in the first place???

Mardea, I hope you are still feeling relatively decent. Cheers for crossing the 1/2 wat line!

PMR53

Sugar cakes

I finished yesterday with 4 Cycles!! Went and got shot today. Tumor shrunk 40%. Getting MX anyway. Will continue with Herceptin. So glad the nausea, fatigue and neuropathy may stop. I am about cooked. My MO said it should be fine to stop at 4 because of the SE I gave experienced. Will get ECho. You seem to be doing well!!

Patty

loriekg

IndyGal35—day 3 is always the worst for me too. But that is the day I usually have my Neulasta shot so by the evening of day 3, I've got that all over achy feeling. My upper arms will hurt even to the touch! And everything tastes Horrible.

Mardea—did the IV Pepcid last longer than taking the pill form? I may ask for that if I can remember next time.

SugarCakes and Patty—just curious if your MO told you in the beginning that you may be stopping after 4? Last time (before round #3) they were unable to feel my tumor at all, but didn't mention anything about stopping after #4. Congrats on being DONE Patty, I'm sure that is a good feeling!

Does anybody have their eyes twitching A LOT? It's subtle, but very annoying. (Plus watery eyes as well.) AND I think I have gained about 7 lbs since last week. It's like BOOM! I had lost about that much, maybe more, right after dx, so it's not like I'm too concerned…but maybe just concerned since it all came back so fast!

--Lorie

PMR53

Lorie,

I have twitching eyes, blurry vision, watery goopy eyes too. I have had so many annoying SE. We decided because my SNB was negative as well as my Pet Scan and I am getting MX I can stop at 4. I do not want any more damage with the neuropathy and the anemia. I am weighing the long term side effects. It's up to you and your MO. You are your own advocate. I am a RN and did alot of research. My MO agreed. Are you experiencing any increased Shortness of breath? That weight gain could be related to Herceptin? Report it to MO. I lost 3 Lbs per cycle. No tastebuds. Eating is a chore. I just don't have appetite. I eat alot of watermelon and mango, Gatorade and some kind of protein.

Also you can ask for 1/2 dose of your Neulasta shot. It made a huge difference in pain. I took a Claritin day before, day of and day after. It made big pain difference. My WBC stayed low normal the whole time. Take care Lorie!! Talk to your doctor and listen to your body. I write everyday on a calendar my SE.

Xoxo Patty

NATSGSG

raleighgirl…All the very very best to you during your treatment and road to recovery...this is what my friend in southern CA sent to inspire me and I am quoting it here for you...

“How would your life be different if…You stopped  worrying about things you can’t control and
started focusing on the things you can? Let today be the day…You free yourself from fruitless
worry, seize the day and take effective action on things you can change.”
- Steve Maraboli, Life, the Truth, and Being Free

"Be gentle with yourself, you're doing the best you can."
- Unknown

"Don't let your happiness be controlled by something you can't control."
- Unknown

Mardea15

Loriekg, the IV pepcid did work!. This is the first time I haven't had any HB on the day of chemo. I was also more careful about what I ate (no gelato this time) so maybe that helped also or maybe the combo. So far, I feel better this time. I also take Omeprazole daily but that didn't seem to make a difference until the IV Pepcid was added.

I had my Neulasta shot today. Maybe the SEs from that will also be less. I'm thinking positive!

I haven't had any discussion with my MO about decreasing to 4 cycles. In my case, I did have a lymph node involved & the only discussion we've had is about decreasing to a lower dose of the chemo drugs if SEs like neuropathy, etc. become more of a problem. She said they prefer to complete full doses if possible but it's not uncommon to decrease the chemo doses before getting through all 6 cycles. I will see how things go over next 3 weeks.

Patty, congrats that you are done after #4!

SugarCakes, I hope everything goes well for you this next 3 weeks & maybe #4 will be your last cycle! Re hot & cold nights - I have been post menopausal for several years & off HRT for at least 3 years. I definitely have hot flashes again since on the TCHP regimen. I'm just hoping they'll stop again eventually, maybe after finishing with herceptin.

Here's hoping everyone does well this week.

DaisyQ

Checking in to see how the early 2015 TCHP ladies are doing..?! I am 3 months PFC, 2 months post BMX, and 12 rounds into 28 of radiation. Most days, I feel pretty good. The 5-6 days after Herceptin-only treatment is a bit rough on the GI tract, but all things considered I am doing well. Things get better. You're doing the hard work right now.

Sending you healing strength and love!

Amy

loriekg

Hi Amy! Glad to hear the radiation is going well, and things are getting better!! Do you have rads every day? --Lorie