April 2015 Chemo Crew... Starting in April? Please join us!

fmmbw

Have had some rough days. On top of BC I suffer from pancreatitis which can be painful, no cancer but did have cyst drained 2 weeks ago. Anyway had to go for fluids yesterday and today. Also have thrush, and given meds for that which made it difficult to swallow. Minimal fatigue and nausea after 1 week from chemo. Dr. now will always do fluids after treatment, as I was ready to wave the white flag. Wishing all the best.

Marla

lovlilynne

Tonight my first born is coming home from his first year at college! I'm so emotional lately, just thinking about seeing him makes me have tears in my eyes. I just saw him two weeks ago! :-)

Also, my friend who is an RO who helped me with navigating the whole BC thing, she is also a writer, and she has been published in NEJM, http://www.drrobin.org/pdfs/Lessons.pdf

Also made me tear up.

Lynne

KBeee

Lynne, My stubble never tingled either; my stubble just kind of lets loose one day! At this point, I wish the few overachieves left behind would just go; I'll be happy to see them back when chemo is done, but for now, the few stragglers bug me! Enjoy seeing that first born!!!!! How exciting!

Princess, My MO is very aggressive about heartburn meds too. He told me before AC started that it would cause serious heartburn and made sure I had meds to treat it.

Karen, Glad you got to skip the decadron. I was thrilled to hear my MO does not use it (other than premeds) unless needed for nausea. I'll take nausea over the jitters and steroid crash!

SueH, Sounds like your hubby is a keeper!

Fran, I'd have been so mad about the party comment too. I hope you got it resolved without having to change plans.

ksusan, Sounds like you have understanding loved ones.

Positive spirit, my leg hair is 90% gone. Just enough left to have to occasionally shave. I wish the other 10% would go away and stay away.

melb, Scary about that port!!! If it is a power port, ask every single person who accesses it if they are using heparin. If they forget, it could clot. I am surprised at how many times already I have had to remind nurses. I hope the injections are working. The paramedic in me has to add that if you have ANY chest pain or shortness of breath while you have that clot, to call MO or go to ER immediately and make sure they know about the clot.

Greenae, hope #3 goes well!

Stephmoen, What great news that your tumor shrank so much already!!!I hope the Neulasta does it's job. Sounds like your hubby and son are really sensitive to your needs; that's fabulous! I feel really blessed by great friends who keep me fed, help shuttle kids when needed, etc. There are few positives to cancer, but one is seeing how many people care.

Lemonade, I am so surprised you are no tin the hospital. I hope your MO is keeping a close eye on you!

fmmbw, The pancreatitis on top of BC must be horrible. I hope the fluids help next time. They did seem to help me a little this time around and I will get them next time as well.

Luckily 99% of the time DH is very supportive and helpful. He just needs a little reminder every now and then when he gets so wrapped up in work that he loses sight of everything else. He got his reminder this week, so he's been great ever since. My kiddos are very independent and self sufficient which helps too. The best thing I ever did was teach them how to do their own laundry! I am enjoying my last few good days before my last AC next week. I got a good run in today (I do use the word run loosely...if it is faster than a walk, it is a run), had a great training last night at work, and am working quite a few on call and duty shifts over the next few days. I do love the few days of relative normalcy.

Stephmoen

has anyone ever had a reaction I taxotere it was so weird this was my 2nd time around and 5 mins into it my throat started to close up and I turned all red the nurses acted fast though! Pumped me with some more steroids and Benadryl that made me feel high she started me back of slowly and kept an eye on my I finished at regular speed I just hope this isn't something I will have to worry about with the next 4 infusions

Vanmama

Stephmoen, my first day of chemo I had the mother of all reactions to Taxotere--total anaphylactic reaction! It will never be part of my treatment again. My nurse did tell me it's usually the first couple of times, but of course everyone reacts differently.

I was changed to CMF. Today is my second infusion. So far so good.

ksusan

Stephmoen, yes, I started flushing from T and they stopped the infusion, monitored me, gave me IV steroids, monitored me, and then finished running the T with no problems. It happens, so let the nurse know right away. From what I was told, having it happen once doesn't mean it will happen again.

AndreaC

lemonadehk - So sorry to hear of your pneumonia. Hugs! Be glad you were not admitted to hospital - you are better off at home, trust me. I work in a hospital and they are full of germs. With a compromised immune system you do not want to pick something else up! Get better soon!

I have a nasty cough too...went to ER with a temp too (Sunday) but my bloodwork and chest X-ray were fine so I was sent home. I am finally feeling better!

Stephmoen - you are so lucky to be surrounded by such wonderful friends and family! I am too...my husband is terrific, has been to a few dr's appointments with me and my first chemo, but he works full time in another city so I don't want him to take too much time off work (although he will if it's important to me). But I have a lot of great friends who will drive me to appointments, come for tea, listen to my woes, and cheer me up. One of my friends (who doesn't live too far from me) just mailed me an "I'm thinking of you" card.

Something like this really shows you how many lives you have touched

Andrea

Rpayton

Ugghh So sorry to read about all of you in the hospital, blood clots, port pain, and other nasty immune system issues. I'm off to #2 spa treatment Friday. Those of you going to the bar too, good luck. Praying we all have low SE for Mother's Day! Happy Mother's Day to all!!! And if you are not a mom to a human I'm sure you are a mother to someone or something special in your life. Celebrate Life!

lemonadehk

Thank you AndreaC! Hope your cough will clear up soon!

littleblueflowers

Hoving my Thursday chemo-sabes made it ok! Friday ladies, good luck! Everyone who came befor us this week, hope you are feeling better!

Fran2014

Hi all- happy almost weekend.

fmmbw- sorry you are having a "challenging" week as well. Better days are ahead for us friend!

Stephmoen- Ugh!! You can't seem to catch a break with the reactions! Glad they were able to address it quickly and effectively though.

lemonadehk- Get better soon!! I'm thinking that with our immune systems so compromised, please be patient-it might take a bit of time for you to really fully recover-I know it just plain sucks!!

Rpayton & the others heading to the "bar"- Sending out lots of positive vibes and let those nasty cells be gone!!!!!

Lynne- I got all teary when I read your post. I'm so happy your son is headed home! Despite the occasional aggravation they give us, our kids are truly such amazing individuals. My son was accepted into the University of Delaware for the fall (for chemical engineering-he definitely inherited my DH's math/science genes- not mine!!). As thrilled as I am for him, I am so struggling with all the emotional stuff I'm going through (I'm sure this whole cancer thing isn't helping my mental stability either!). This week I took him to get measured for his tuxedo for his prom and I could barely hold in the tears when he tried on the jacket (yep-I'm sure the salesman thought I was a basket case). THEN when we are driving home, DS thanks me and says that he is sorry about causing "such a hassle about the party" and he worked it all out for the 20th then goes- "I screwed up mom & I'm sorry- I really do love and appreciate you so much-you know that right?"-OK then I really start crying!!

Whoever wrote last week that chemo is "the gift that just keeps on giving"-you are so damn right!! I wake up yesterday (Day #7) with "raccoon eyes" and they are so itchy & red. I try some of the Genteal eye drops that you all recommended but as the day goes on there is no relief or improvement. Call MO- apparently I'm having some kind of damn reaction to the sun!! It's not IN my eye but AROUND my eye. Even though I've been applying sunscreen to my cheeks, arms, etc.-when I've been pushing myself to go out and walk the dog (in- between my bouts of ongoing diarrhea) and/or driving in the car- the sun has been causing a reaction to the skin around my eyes due to the epirubicin (another form of adrimycin). REALLY????? As sorry as I'm feeling for myself, I truly felt so bad for my DH last night-he just looked so dejected on my behalf. I think if I develop one more SE-he will burst into tears himself! (then we'll be two basket cases!!)

Wishing you all a good weekend ahead!

 

littleblueflowers

Piled up on the couch today in the new house waiting to go get my neulasta shot. AC 3 nausea seems a bit better but I am whipped out! I'm sure moving all week didn't help. Gonna have to leave the rest. And gosh darn it, the thermostat isn't working, so it's freezing in here!

lovlilynne

TGIF April Ladies!

My RO friend posted another good article: http://jco.ascopubs.org/content/33/14/1620?cmpid=j... Don't let anyone say, "you've got nothing to lose" . . .

Sending all my positive thoughts to Stephmoen, lemonadehk, Marla, and Andrea. I feel so bad for what you are going through. I cannot even comprehend being sicker than we already are with chemo. I hope the weekend brings rest and healing.

Fran, I've been an emotional wreck - your post turned the waterworks on for me. That would have totally crushed me if DS had said that to me. My sister posted one of those videos with soldiers surprising their moms with being home - I was bawling. I'm sure my emotions are just raw. I have actually had a couple of uncontrollable laughing fits, and it reminded me of when I was PG - I used to get those instead of crying, which was a pleasant side effect of the pregnancy hormones!

Jen - chemo-sabes - cracking me up!

I am feeling like I am turning the corner on fatigue and stomach - I'll still take the Pepcid and Claritin through next week, but stopped the Zofran today to see if I could get away without it.

My hair is falling out and it's really annoying - getting in my face and mouth, etc. I'm wearing a hat to minimize it, but definitely need to do the buzz cut. I'm just waiting for DS to get up (yes, still sleeping at 12:30 PM), to see if he wants to go to super cuts and then I'll have them do it.

No specific plans for MD, I'll be happy to feel like doing normal errands and chores around the house!

Lynne

KBeee

Lynne, GREAT article! My previous oncologist blew off every side effect. He'd say the same thing. "TC does not cause that"...when clearly it did. He even refused to do a blood draw when my fever was 100.3 instead of 100.4. "You are not at risk for neutropenic fever". I was hospitlalized the next day for 4 days with a high temp and no neutrophils. The last straw was when I developed some lumps and he refused to do an ultrasound..."you're not at risk for recurrence. You need to stop worrying. If it goes from a grape to a golf ball then call me. Otherwise don't worry." That was the last time I EVER saw him. 6 months later I was diagnosed with my recurrence. I obviously have a new MO who is fabulous, very specific on risks and side effects and wants to know about any side effect so he can help deal with them. What a difference. There is a clear note in my chart that I am never to see my previous MO. I am pretty sure they'd have to call hospital security for a ranting raging female by the time I got done saying what I'd like to say to him

Littleblue, get some rest!!!!!!!!! Love the term chemo-sabes!

Fran, Soooooooo glad your son came around. I was teary-eyed reading that!

I hope everyone feeling ill feels better soon. Hopefully spring will bring warm temperatures, open windows and less germs.

Off to work; wishing everyone a fabulous TGIF.

ksusan

Good vibes and healing to everyone, especially people having crummy side effects.

I had a chance to catch up with some of my university students yesterday and today. My medical issues are causing a big round of student disclosures about their and their families' experiences with cancer, leukemia, hepatitis C, rheumatoid arthritis, and other serious illness. They seem reassured to see me functional, teaching, and "flat and no hat."

This is my favorite of the new "Non-traditional Empathy Cards":

littleblueflowers

Good article, lynne! Thanks for posting!

Fran, your son is adorable!

Kbeeee, yr an animal! Your schedule motivates me to no end!

EVERYONE FEELING OK?

littleblueflowers

Ok ladies who are or have ridden the dragon this week...here is my inspiring video to help get our blood pumping and ready to fight for our lives! It's also inspiring because the girl pilot in the last frame I hear is a BC survivor! It's so funny because my boss sent me a card which said Time to draw your sword, girl! 'nough said.

gkodad

Hello everyone - Day 9 and I'm feeling quite OK...I won't go so far as to say good, but this is a significant improvement.   If I can have a week of "quite OK" between each infusion, maybe I can survive this.   Hope it's working out that way for most of you.

ksusan - love the card!  I've been posting "lemon to lemonade" alternatives on my facebook page for the amusement of my friends, and this one is going up!  

 

 

Rockerwife

What is it with me and day 9 after chemo? Let's see day 9 of TC #1 I went to the ER and had low neutrophils and was admitted. Now it is day 9 of TC #2 and I am here again , this time because I have been light headed and have had heart palpitations. Oh and my neutrophils are not low, they are crazy high from the neupogen. Like 23,000 high and not anemic. hemoglobin numbers are good. They drew a lot of blood and my Troponin levels are elevated. That is an enzyme that is released when the heart may have been damaged. Waiting for Echocardigram and more blood work. Did the Neupogen cause this by making my body work so hard or is it the chemo? I hope my heart is not damaged or they find I had a heart attack. I am irritated by this. I was perfectly healthy before cancer decided to come along for the ride uninvited. I worked out 5 days a week and was muscular. Now I am a floppy vegetable that wants to be a beast. I was walking and now can't even do that consistently. Sorry for the vent

mysunshine48

Anyone heard of or is getting the Neulasta shot in the patch and not a shot! I saw my MO today for my pre chemo appt. and she said they are now putting on a Neulasta patch at the end of infusion. It has a needle in it and it automatically injects after 27 hours. It is not a transdermal patch.....actually gives you a shot! Then it turns green and you take it off!

Stephmoen

ugh rockerwife im so sorry you're in the hospital again chemo throws a lot of curveballs into the cancer mix and it's not fair I hope that everything goes ok

fmmbw

My Mo just mentioned the Neulasta patch to me on Wednesday. Sounds promising! After 2 days of fluids this morning was whoa, diarhea like crazy. Finally after a few hours and a dose of immodium felt better. Mo prescribed some meds, and I swear my house looks like a Walgreen's! No real appetite but more energy. I'd love to be feeling 100% better, but would settle for 50% at this point. Have a great SE free day.

Marla

GingerChi

Lemonade, Are you recouping ok from the pneumonia? Hope you are feeling better soon!!!!

Rockerwife, I am so sorry! I hope and pray everything is ok with your heart!! I understand completely what you mean.... I felt fine until I started being treated for cancer....what a difference between now and before diagnoses!! Its hard not to feel thoroughly disgusted at the circumstances sometimes, and today is one of those days for me!

MySunshine: I did the on body injector for Neulasta my last treatment. I didnt have any problems with it. When they first put it on, after about 2 minutes it started beeping and the needle was inserted. It felt kind of like a rubber band snap, not really painful. When the dose was being administered 27 hrs later, I didn't feel a thing. It took about 45 minutes, then like you said, it will beep to let you know the dose is complete!

Fran that was so sweet of your son!!! Melts the heart!

Littleblue, I love the card from your boss! I'd like to take a sword to something about now! lol

Saw MO today, my labs were good and I'll have AC #3 on Tuesday. I've not had a great day...delays at the Dr office...but afterwards had a nice lunch with a friend. It was at a cafe on a lake, and after lunch we sat by the water enjoying the day...until my friend went to show me something on her phone. I dropped the phone, and it bounced right off the pier into the lake. Needless to say, I feel horrible. She had insurance, but still had to pay a deductible...and she wont let me reimburse her, I just want to crawl in a hole!

I hope that the weekend brings healing and better days for everyone of us!!

gingeel

My mother just buzzed my head with a #1. But I look like a patchy cat. lol Can I go closer? I've read from you girls that it can cause foliculitis and such...

Fran2014

Oh my gosh, Rockerwife, this is just crazy!!!! You SO have a right to vent!!! I'm hoping that it is just a "bad day 9" (yet again) & there is no significant heart issues. I'm telling you if we listed all the crazy crap that has happened to us in just the last month alone (and our ability to "bounce back" with each passing "issue")- we could make a really good book or movie!!

littleblueflowers

Oh rockerwife, that blows! I sure hope it isn't anything permanent!

Lemonade, how are the lungs treating ya?

lol gingeel, patchy cat! I wish that was my username! Dunno about razoring the head....I've heard bad things! BUT my friend said if I want my head smooth rather than constant itchy velcro as the hair grows and falls out again then I'd have to bic it. So I'm on the fence about it. Sigh. So many unknowns!

Rpayton

oh my I've been in the chair today and reading everyone's posts. So sorry for what I'm reading. So glad you are all venting here. We all want to know and want to give you support. This is a great safe place to come.

I have not heard about the Nuelasta patch, great idea! Would save me a 2nd day, 30min drive to the lab. Thanks for mentioning. So great to read about all the different treatments available.

After spa day 2 feeling pretty good like last time. So kinda' hoping for the same pattern. Which means Monday will hit with major fatigue, etc. And a couple weeks of skin and GI issues to follow. Then just when I think feeling kinda' normal back to the chair.LoL Those of you with bad SE praying it pasts quickly! And it will pass.

(((Hugs))) peace

Renee

thsizit7

I'm so sorry to here about so many being sick, hospitalized, and just having a bad time. I will pray for you all!

Stephmoen - I also had a reaction to Taxotere the first time, had a throbbing pain start in my lower back that ran all the way up to my head, I buzzed nurses, before they got it unhooked my chest started feeling tight, getting short of breath,Three Drs and a several nurses came flying in like it was a code, my blood pressure and pulse had jumped sky high! they stopped the drip, started Benadryl, and it started slacking off immediatley. I was fine in just a few min. They gave me more steroids and Zantac in IV, waited about 20 min and I took the rest of the bag with no problem. From now on I will have to double up on the steroids the day before, morning of, and in the drip before chemo to tolerate it. I was afraid they would not give it to me again and change to something else, but they said the double steroids would take care of it. I want to take that combo of drugs, PHT because of the huge success rate. I can deal with steroids, it doesn't make me jittery just lots of energy...I think I will have a very clean house during this ordeal !!!

I've had no problems with my port. Don't even realize it is there now. I go back next Tue to let my surgeon check it.

Don't know if I will make it to my 2nd round before hair starts to come out... this morning when I combed through it strands of hair came out from the root! I can pull a strand here and there and it will just pop out...kind of freaky!!! If it continues like this I will call my hairdresser and up the date to get it shaved... I refuse to watch it fall out!

I'm just taking one day at a time and will deal with whatever it brings. I get my strength and positive spirit from God. He deserves all the praise and glory! My husband is the absolute best, he goes to all Dr apps, anything associated with my situation, sees to my every need. I could not ask for a better caregiver. He is my soulmate. My family and friends are very supportive and this makes a huge difference, I am truly blessed.

Hope everyone has a fabulous weekend and Mothers Day!

Life is Good.

SueH58

thsizit7 - What is PHT? I never heard of that regimen?

AndreaC

hi everyone!

Fran: you have the sweetest son! My son went into chemical engineering too, but never completed his degree...it is a tough program! Yours must be super smart, I wish him every success.

Rockerwife: I hope all your tests are negative! You are making me nervous because my day #9 is tomorrow!

Kbeee: your first MO was an a-hole! I can't believe the incompetence. I feel so blessed to have all my doctors really listen to what I have to say. Even my MO agreed with my request for a PET scan, even though he wasn't worried (negative, thank goodness!)

On a personal note...if I may be permitted to brag a little...my son lives in Ottawa, all the way across the country from me...he sent me a Mother's Day card in which he wrote a sonnet! And it is brilliant! He also sent me a couple of books and some gummy bears. Awwww! I'm going to see my daughter and grand babies tomorrow for an early MD breakfast...can't wait! Happy Mother's Day to all