April 2013 Chemo Group

BeHereNow

Hi Rain! I'm sorry you are having to deal with cancer, especially during ths huge life change with work! I agree that your new employer will probably support you in taking care of yourself. My experience has been that the journey is unpredictable and we're all somewhat unique. You will need to allow for some curve balls during the course of your treatment.



As Virginia said, I think getting the liquids in is critical. I drink 96oz a day. I have some strategies that helpmme drink enough. I add organic unsweetened cranberry or lemon juice to my water (and sometimes I use hot water with the lemon juice. I like it.). I drink peppermint tea, too. You'll find what works for you.



I've had to let myself cry. More tears than I ever could have imagined. It has helped.



Physically, I have some SEs.... Major constipation, fatigue, nausea, sore fingers, sinus headaches and inflammation, and slight sore mouth (the salt water rinse after each meal and at bedtime has helped a lot). But overall, I'm managing. This is doable, Rain! You can get through this.



Regarding your work, you'll have some good days and some bad. Don't fight the tide if you don't have to. Self care is critical, and in the long run, listening to your body and taking care of it shoud give you more good days than if you try to tough things out. Just my opinion.



I'm sorry for my delayed response. I'm on business travel -- the only speaking engagement I kept on the books -- with my MOs blessing. I flew today wearing a mask, gloves, new fake boobs, and a wig! Quite the experience.



I'm very nervous to be doing this work bald! Lol. I have a wig, but it's all so new, I feel really self conscious. But I love my work and think that once I get going I'll have a good Time. Maybe I'll even forget this BC for a few hours!



We're here for you! I'm glad you found us. I know it's scary and hard.



XO

daffyc

Virginia, you are so brave with your traveling and flight experiences!  I hope you have a wonderful time working away from home and yes, forget about BC for a few hours!!!  

I just did the hair buzz on Monday.  A few tears as I started and once during, but once it was done, I felt so much better.  It was a weight lifted (literally and figuratively).  One more thing checked off in the long bc to do list.  I'm a SAHM and am without a vehicle this week so I haven't experienced going outside the home with scarf or wig yet, but am feeling pretty comfortable at home (and to the mailbox).  I am not ready to go bald when my kids are around so I have been wearing something when they are home, but today stayed uncovered most of the day when they were in school.  

DH took it down to a 1 (I think).  So, I have some patchy stubble.  Is that going to fall out?  It's kind of bothersome, but not too bad. 

Pattysmiles

Pamela,

Thank you for posting about the buffs. I had looked at so many things last month and never made any purchases, except for some regular scarves from Target, and I hit Goodwill yesterday and picked up two scarves. Figured I would learn to tie them around my head.

The buff looks way easier. Only down side is I can't see it on me. When I was in Target I took the headscarves to the fitting room and "wrapped" my head...well, as best I could. There were so many scarves I liked that the colors just did not look good on me. I was so happy I did that. Hoping the buffs I picked are good colors for me. I made sure to buy some UV buffs so I can wear outside. Also bought one for the gym. If I like them I might have to buy more!

Thank you!

Rosina0015

So had my 3rd chemo on Tuesday. I took advice from one of you (sorry cant remember who right now) about asking the nurse for extra IV fluids. I don't know if it was that or getting down the right combo of meds but so far this chemo has been the easiest on me. Not being plugged up has been so awesome!! Oh the little things in life.



Of course being on day 3 post chemo Im tired today and really dreading tomorrow. Last treatment day 4 hit me like a Mack truck. Hopefully after the sun goes down DH and I can go for a walk, it's been 90's all week.



Well Sister Warriors I wish you prayers, light and limited SE's.



G'night.

Virginger

anne11595 sorry your having to stay home..but remember This Too Shall Pass...

Rain...LOVE your casting....please keep us posted on CHEMOGATE....helps me so much to Laugh and keep a sense of humor

Katie...good luck girl, you'll BE great and another thing off the Check List :-)

daffyc I've gotten SO comfortable, I only where a hat going outside...even had someone come up and ask...Weren't you on TV the other Day? had a nice conversation while I waited for my Omelet and Grits to go from Waffle House....ov vey...crazy..they WERE very Nice and Thanked me for speaking out.

Had my pre treatment blood work today....heart, lungs were clear..and MO said my Blood pressure was like an 18 year old KID..

Told Dr how much water I was drinking, and he suggested I add gator-aid or something with electrolytes...wow who knew.

Treatment # 2 tomorrow..and OFF work till Monday....REST and more REST for me this weekend...

peaceful night and easy days My Sister Warriors!

didevro

Virginger, loved your video.  I'm due for chemo round #2 on Monday ... trying not to dread it so much.  Ended up in hospital on a drip the first night last time, very severe headache, then had terrible stomach craps day 4  (ambulance, hospital, morphine, etc).  However, putting one foot in front of the other is the only way to go.

I got my hair cut to about 2cm all over, last week, and about 4 days ago it started falling out.  Drove me crazy, having hair everywhere, so I grabbed scissors and a mirror, went into my garden and started hacking away!  I soon realised that I couldn't manage the back, then spyed my neighbour over the fence and asked him if he had a few minutes to spare.  Handed him the scissors and leaned over the fence   So he cut off the rest, and then offered to use his clippers , to tidy it up.  So now I have a buzz cut, and the fuzz is falling out fast.    I'd like to go bare headed, but it's coming into winter here now, so beanies and scarves, and buffs, will get plenty of use.

Best wishes to all of you

6cats

PamelaKay,

It looks like we both are on almost the same schedule.... does that make us boobie buddies?

6cats

MinusTwo,  I asked my MO yesterday about supplements. She said absolutely not, the only supplements she allows are calcium, vitamin D, and omegas.

I pushed a little... Vitamin C and B Vitamins are the most innocuous vitamins I know... she said studies had been done on Vitamin C and that they decrease the effectiveness of chemo. That once I was done with Chemo (1 down, 15 to go), she didn't care what vitamins or herbs I took.

Now all I have to do is find those studies...

Irene1975

Ladies I need to vent. I have been good up until I hit a wall this morning not knowing what to do. I am a week and one day out from when I had my first treatment. I'm on a 6 treatment of tch once every 3 weeks.



The nuelasta shot last Friday I had reactions to - skin burning.

Day three, so so, sore, blah, not really sleeping started to get achy.

Day four, the bathroom becomes my best friend every hour.....not because I am vomiting....gross I know.. Sorry....



Since then everything has gotten worse, to now the achy pains became pain pain in the upper part of my neck and knees. I call the doctors and they say its all normal, but if it continues take Vicodin ....



My chemo is now as a preventative. They say I have an 80 % chance it won't come back, but with chemo I have a 95% chance it doesn't come back. BUT that extra 15% can also come with nerve damage, organ issues later, heart concerns, etc.



Not knowing how the next treatment will be -could be worse-..... I am questioning myself if its worth putting myself through it...



Please forgive me, I do not mean to upset anyone or be a downer, but you all are the ONLY ones who would understand my feelings.

AllieM

Irene,

My chemo is precautionary, too, and I was thinking the same thing. My second chemo was not nearly as bad as the first, but I have developed hives since Saturday and am miserable and itching all over. My MO had me get IV steroids and take benedryl, but just when I think they're gone they crop back up again. My MO says he doesn't think its the chemo since the hives started almost two weeks after treatment, but I've come across lots of posts online about people getting hives from chemo. Also, I haven't had Neulasta yet, but will have to have it next time because my counts were so low last time. The SE's of that scare me almost as much as the chemo. I will have to call my MO today to see if I should still have chemo on Monday since the hives are not gone. Sorry, I don't know if its worth it either. Just wanted to let you know I'm with ya on that thought.

Has anyone else had hives?

Jen987

Irene and Allie sorry to hear you ladies feel like crap. I totally understand as I ended up in E.R. twice, one week after my first chemo treatment. I was really nervous to get my second treatment last Monday. Now I'm almost 2 weeks post treatment and I feel great and didn't miss a day of work this time around. It was a breeze with minimal side effects. So I hope yours goes better next time too. Stay strong.


ETA: I didn't want to get the Neulasta shot this time as I think that's what caused all my pain (killer migraine) first time.

Pattysmiles

Irene,

Did you take Claritin ? It is supposed to ward off the pain in the bones from the Neulasta shot.

I have it in my arsenal...I start chemo on Monday.

From what I've read take one on the morning of the shot and take one each day for the next 6 days. Someone else posted to take one the day before the shot (which would make it chemo day?)

Anyhow, something to consider!

Hoping you feel better.

Pat

Irene1975

Thank you all ladies. It's something I am struggling with and just don't know if its worth it to me personally just for a " hopes I don't get it again" not a promise that I won't. Just don't know if having to go through it again if it comes back justifies the now for me. I have until next week to decide, maybe I will change. so stressed.



As for the claritn I asked, they told me no

Virginger

Irene, Get the Claritin..not ClaritinD, but regular Claritin. I've talked to 3 or 4 friends from back home who DID get the shot and said HOW much it helped...I'm not getting the shot but was ready to go get some Claritin if they added it. Hope your 2nd treatment is BETTER..but it is your chose if it iss not right for you, IT IS your decision...but just realise that UPS your chance of going thougt this ALL over again...know it's easy to say Don't STRESS..but DON'T stress dear...stress will EAT you UP....

had as nice a day getting treatment as you can....Friend from here in Charlotte went with me...Bless her she had to get up @ 6am..to get to my house by 7:30 for our 8:30 apt.....I DID forget to take my steroid pills this am, but let the nurse know, and she added it to my pre drugs.

Showed one of that ladies I met yesterday the video and she was so impress and glad to have someone to talk to...paying it forward here

Out the door by Noon and treated my friend to lunch at my new favorite place by the Hospital. Alvocdo stuffed with quino and topped with roasted chicken and two creamy sauces..great patio with those gutter planters you see all over Pintrest..cute cute cute and YUMMY for my tummy.

Home now...chillin out..did have a wonderful suprise delivery....a box from the Universtiy of Alabama with two pom pom's, two buttons, two tumblers, and a SIGNED hat by Nick Saban, head coach!

Hope everyone has a peaceful and pleasant day....

shipsgirl

Just had #2 yesterday. What a completely different experience from #1. 

This was calm and smooth. I'm doing cold caps and the first time seemed stressful and chaotic.  THis time I had Atavan to relax me and a second helper with the caps.  They had it all handled so I didnt' have the manage things.  What a difference.  It even made the cap discomfort much easier to handle.

I also had big trouble last time with vomiting the first night and a low grade nausea for days after.  This time I had Emend and that also made a huge difference.  No nausea at all last night.  Even had some pizza while continuing with the cold caps at home. 

Today, I'm a little shaky and tired, but I don't have that feeling that I've been through a battlefield.  The lesson I learned is to make requests of people and they are happy to step up  and help.  Reducing anything that contributes to stress is really important.  And finally, puking is no fun so get help to stop it.  lol

Have a beautiful day, with no SE's.

CarolA5587

Really? No Claritin? My doctor recommended that even though I didn't have the Neulasta shot the first time. He also wanted me to take B6 which is supposed to help with the aches. And I had a round of steroids. Guess they all worked. That wasn't a problem. I'll know more about that after I have the shot this time.

Said adiós to my hair today. When I got home from work today, I looked like I had a bird's nest on my shoulders. So I took the clippers to it. My head was on fire. Feels better although strange.

Sounds like most of the second rounds are going smoothly. I have mine next week. I'll be watching to see how you all do.

Happy weekend to all of you. Hope you get some much needed rest. You deserve it!

BeHereNow

Irene, I'm sorry to hear how hard it's been. I would get a second opinion on the neulasta, or insist on research your doc can point to for why you shouldnt take it. I'm no expert, but I have not heard of anyone being told they can't take regular Claritin. Also, FYI, I take it daily (not just at neulasta time). I've had few SEs from the neulasta.



It's ok to question your doctor. You should not have to suffer any more than necessary during chemo.



Take care

Virginger

yes no metion of the Claritin..so I asked..he said your not getting the Shot, so you don't need it...I am taking the Steroid pills....

indenial

Irene, I would think if the choice is continuing but with Claritin, or not continuing at all, it should be a no-brainer that they should let you take the Claritin! Or reconsider the Neulasta shot -- I am not geting that shot and did OK last round. I'm sorry you're feeling so awful, please talk to your docs about managing SE's better or reducing your dose or SOMETHING to make this all managable for you!

Has anyone else experienced post-infusion depression? I felt this last time around days 3-5 but this time it is much, much worse. I know a big part of the problem is I have so little support. For some reason I expected everyone to rally around me throughout chemo -- bring food, offer to babysit, help me clean, etc. Instead, I was taking care of my kid alone yesterday (today my husband is home at least!) and we are eating crap food and I just feel so very alone. I have 2 friends who are usually very helpful but neither is able to be around right now (for very good reasons) and the other friends have disappeared. We have no family support. My husband is totally floundering and I cannot be supportive to him because I'm too wrapped up in my own discomfort & misery. I really tried to line up some support for him (and for all of us, for that matter) but apparently my efforts have failed and we are on our own. In addition to the lack of support, all of a sudden the reality of all of this is hitting me. I'm sitting here with tears streaming down my face realizing I will never be able to breastfeed again. Minor to some, maybe, but it has been central to my parenting. And I may not even be able to have anymore kids anyway, and no one wants to adopt to a parent with cancer. This is all so depressing. I don't know if it's the chemo or the steroids or feeling so hurt about my friends abandoning me or just the reality of cancer hitting me all at once, but I am so, so down. I just want to say I'm done with cancer & get up and walk away and have my life go back to normal. To be honest, 'normal' wasn't really much better than this, but this sucks. 

Jen987

Indenial, if I lived near you I would so come over and give you a big hug and make dinner for you and your family.

PamelaKay

Indenial, I'm so sorry to hear how hard it is for you right now. Have you contacted your local cancer center/cancer support group? In our area there is a cancer support center that has a book of people who have volunteered to help with everything from free house cleaning to massages.


If all else fails, remember that a couple months of crappy food is not going to cause your family lasting harm. Neither is a dirty or messy house. Let go of anything that isn't essential to your health and healing right now.


I totally understand about the breastfeeding and how important it is to you. Have faith that, given time, you will find the right path for your family. There are many avenues to parenthood, not all of which involve adoption or giving birth (and I don't know much about adoption, but why would having cancer put you out of the running once you have recovered?). Be open to all possibilities.


I suspect the steroids are a big factor in how you feel at the moment. They really messed me up emotionally. I'm better now they have cleared my system, and I hope you will be once you get past them.



Irene and Allie, sorry to hear about the bad side effects. Before you drop the chemo, make sure to get a second opinion about it. Research as much as possible; hit the library and stock up on books on BC. I've been reading Dr. Susan Love's breast book,www.dslrf.org, which has lots of detailed information about treatment I haven't seen online.


You are both ER+ and node negative: have you had your oncoscore done? If not, you might want to consider doing so, as it will tell you your chances of recurrence based on the genetic typing of your cancer. (More at Oncoscore.com. I think Dr. Love has an online assessment as well.)


And tell you MO how unhappy you are with the SE and that you are considering stopping chemo because of them. If they aren't responsive, it might be time for a change.


If they won't let you have the Claritin (ask why not), try Tylenol (it helped me and is cheaper; my MO said I could do both together). Allie, not everyone has bad SE from the Neulasta; I had only mild symptoms.

MinusTwo

6cats: do you really have six?

RE: the vitimin debate - I got many recommends from the ladies at the TCH thread.  Vit B6 & B-12, L-Glutamine & L-Carnitine may possibly help prevent some of the neuropathy from the tax & carb, and in my case the Perjeta also.  Also read I need to keep on with Calcuim & Vit D.  My onco said go ahead, but i will be asking again Monday.  The infusion pharmacist said no Vit 3 or Omega 3 since they foster cell growth.   These discussions are the 2nd time I've heard to cut out Vit C.  I'll report back after my Monday appointment.

RE:  Claritin - my MO and infusion nurses all said to take Claritin day before chemo, day of and 5 days after.  I asked and generic supposedly works the same.  I had the full 10 possible days of pain after Neulasta, but Taxo & Perjeta can also cause joint & bone pain.  I may spring for name brand & try it for this 2nd round.

So much of this stuff is by-guess & by-golly since every one of us will react differently.

Slgreb

Lurker coming out of the shadows here. I started chemo 4-22-13. I have had two rounds of Taxol, my third is Monday. From a lot of what I read I see that most have their AC (mine will be FAC) first and taxol next. Mine is the other way around. I wonder what the reasoning for that would be. I did not ask my oncologist as I had no idea about any of this until I started reading the boards. I started my chemo at MD Anderson, and will be switching to a local oncologist after my next treatment. He stated at our consultation that although it is a regimine in the standard of care that it is not their normal regimine. I will have 12 weekly doses of Taxol followed by a 3 day FAC infusion every 3 weeks for 4 treatments. Not sure what's to come, but I know God's got this. Praying for you all.

Sharon

"Live by faith, not by fear."

Slgreb

Lurker coming out of the shadows here. I started chemo 4-22-13. I have had two rounds of Taxol, my third is Monday. From a lot of what I read I see that most have their AC (mine will be FAC) first and taxol next. Mine is the other way around. I wonder what the reasonging for that would be. I did not ask my oncologist as I had no idea about any of this until I started reading the boards. I started my chemo at MD Anderson, and will be switching to a local oncologist after my next treatment. He stated at our consultation that although it is a regimine in the standard of care that it is not their normal regimine. I will have 12 weekly doses of Taxol followed by a 3 day FAC infusion every 3 weeks for 4 treatments. Not sure what's to come, but I know God's got this. Praying for you all.

Sharon

"Live by faith, not by fear."

6cats

OMG !!! I was sooooo happy to sign on this morning and find you all were feeling as CRAPPY as I am.  I was smiling by the time I finished reading the new posts!!!

One Week Post AC and Day 2 Newlasta...

• Depression -- yes
• Diarrhea -- yes, I'm on a soft food diet
• Killer Headache -- still
• Hubby freaking out -- Yes, he spent one night in a hotel this week.... otherwise is very supportive
• The reality I have CANCER (screaming silently to not wake the family)
• Thinking of shaving my head -- the slow "fall-out" is driving me crazy
• Unsure of what support is actually there... and not wanting to use it until I REALLY need it
• Add can't sleep, and sores in my mouth

So thank you for making me feel not so alone.... I can face the day today!

And... thank you for those who posted that #2 wasn't so bad.... sometimes I work myself into a frenzy because I don't know what is coming next.

Can we all go on vacation together? Sometimes I think that would be so much more fun that sitting here fretting!

So, thank you for feeling like CRAP and bring some joy to my worried/anxiety filled/lonely/depressive life!!! (And I say that with the greatest love!)

Virginger

there is strength in numbers Lynn!..

i find myself google searching deserted Island..but then remember a SUNBURN on a BALD head might be worse...LOL.....still VERY glad I shaved and took control over the hair, It was all over the place! told folks it's like having a CAT without the litter box....i was having dinner Sunday and HAIR was falling onto my plate...that was when I KNEW it was Time and took control and SHAVED..or had a friend do it for me, and even Video Taped it..one of my friends is an anchor, and she posted a picture on FB, (https://www.facebook.com/photo.php?fbid=452489714826632&set=a.159808500761423.40087.146674682074805&type=1&theater) the comments were great to read.Got tons of 'likes' and shares...

kind empowering to TAKE it ON! getting tons of hats from folks....even a autographed on from Nick Saban, Head Coach of University of Alabama NCAA Champion!...I'll change my profile pic to it....

Hope everyone has an easy Saturday and minimal SE

Irene1975

Ladies can I ask, has anyone on here ever stopped there preventative chemo and are now back because of it?



To those of you who feel crappy, I thank you too for sharing it. It so nice to find comfort somewhere in the loneliness.

anne11595

You know i got up this morning and was telling my dh that I spend part of my nites while im trying to sleep thinking about my next chemo! So yes I am having post chemo depression to Indenial. I only had one bad day ,othier were good once the purple haze left.

We have 6 kids,6 grandkids,1 greatgrand son and granddaughter on the way soon.If I think about all of my family I can do any thing.Doesn't mean that I dont have my bad day,cause I do . But this has to make us strong then we ever dreamed of. There is strength in numbers!! Hope everyone has a great mothers day tomorrow!!!! Even if your not a mother!!

indenial

Ahhh so good to know I am not the only one & I'm not losing my mind or something! I think the fog is lifting tonight, after I spent most of the day staring into space and watching mindless TV. I am still a little down but not so utterly depressed! I almost never cry so last night was rough. Good to know I am not alone. Sending love to all of you tonight.

anne11595

Ok this chemo brain is real!!!!! Mothers day is next Sunday!!!!! Well im ready for it now.