Starting Chemo March 2015

Jackbirdie

I was also going to ask if I could ditch the Neulasta for the last one. Guess I won't bother asking after last week's .8

Have to share a laugh I just read in another thread. Topic was how frustrating it is when people tell you you look good. So this gal couldn't get out of going somewhere and put on her face with what she got from the Look Good a Feel Better. She said instead of LGFB it was FLLG (Feel Lousy Look Great). A new acronym is born!

I love it that she didn't lose her sense of humor....

Italychick

SpecialK, they have me taking day before, day of, and for two days after for the steroids. I'm just thinking that might be overkill since they aren't doing the taxotere for the last round.

Beach bum, have you tried cutting out processed carbs and sugar? When I eat clean, protein, fat, vegetables and minimize carbs, that is when I lose weight. But I can't go too low carb or my hair starts falling out, so I eat a small amount of yams and beans. But mostly protein, fat and vegetables, but not corn, peas, etc since they aren't really vegetables. I stick with lots of broccoli, cauliflower, green beans, zucchini, salads, eggplant type of veggies. I have gotten strict with myself and gone back on my eating program and cut out all the carbs I let creep in during chemo (comfort food), and I am down about four pounds. But that could also be related to being two and a half weeks out from steroids.

ThePrincess

So I start Taxol this week - if I don't have a reaction the first 2 times, they lower the steriod dose? That would be awesome? I'm trying to see if I'm reading this right?

SpecialK

beach - I had some trouble with weight gain too - five surgeries, then chemo/Herceptin, then hormonal therapy and a bunch more surgery.  I tried 1,200 cals a day of healthy food and 5 miles of rapid walking and lost zero pounds.  My former boss has early-onset and very painful arthritis, particularly in her hands and she needs them to work - and her husband found an anti-inflammatory diet online (the Virgin Diet) so she tried it.  She could make a fist within a week and had much less pain!  She also lost 20 pounds even though she was not trying to do that - she did no exercise.  I decided that since I had AI induced joint pain and 20 extra pounds that I would try this too.  I started in Jan of 2014, and promptly had surgeries in Mar/Apr/May so I was not exercising, but still lost a pound a week and my AI pain went away for the most part.  This diet eliminates certain foods that cause inflammation and sensitivity - it is a hard way to eat - not gonna lie!  It has made a huge difference for me, I lost 23 pounds laying on my bed.  I also like this diet because it eliminates dairy and soy - which I had pretty much already done - but being strongly ER+ I am not keen on phytoestrogens and food that comes from a lactating animal.  Here are some links, and if you have questions don't hesitate to ask.  You have to be really ready to make sacrifices to live with this plan - but everyone I know who has tried it has lost weight and felt better.  The second link breaks the info down into a manageable explanation.  I eat grass fed/pasture raised, or organic sources of protein, and follow the Clean 15/Dirty Dozen rules for buying produce - I linked that too.

  http://thevirgindiet.com/

http://www.chewfo.com/diets/the-virgin-diet-by-jj-virgin-2012-what-to-eat-and-foods-to-avoid-food-list/

http://www.kitchen-intuition.com/dirty-dozen-clean-15-list-printable/

 

SpecialK

Italy - ask about just doing the infused ones day of, see what your MO says.

Beachbum1023

italychick, I have tried about everything already! I eat mostly fruits and vegetables, protein, and I have cut out the carbs and sugar. It's just stuck, and I don't know why this far out from chemo. Thanks, Cheryl

neverthought

Thanks SpecialK. I actually need to put weight on but shudder to think what condition my bones and muscles are in. I am really deconditioned. I was on a really strict no migraine trigger diet. Hard to balance healthy with what is palatable when on chemo, but now really need to get on the ball with diet and exercise. But every time I exercise, I get the achy heavy legs, chest wall pain in area of mastectomy and swollen legs.

One thing about weight gain, a couple of times I've been on SSRI anti-depressants, I kept gaining weight no matter how hard I tried. Soon as I tapered off, back to normal weight, though stopping them was a nightmare of side effects. I remember an oncologist and oncology social worker telling me that almost everyone in treatment is getting antidepressants. I wonder if it is possible that the SSRIs could sometimes cause weight gain that is hard to reverse.

Don't know what I would do without everyone sharing their stories and advice on this thread. So very grateful.

Italychick

beach bum, lots of fruit is a big source of sugar. I stick with berries and grapefruit mainly.

SpecialK

never - I know those drugs do mess with weight, it's a really common issue, but I have not taken any anti depressants or anti anxiety meds at any point. My gain was fluid retention from steroids and the chemo drugs, and actually I had a body wide swelling event about 2/3 of the way through. I was not consuming enough calories to gain from either eating the wrong things or eating too many calories and I ended up having to go on a mild diuretic, which I took for about a year before tapering off.

SueH58

Theresa, you continue to amaze me with your self control. Do you eat all organic berries? Must get expensive!!!

Italychick

yes, I eat all organic if I can. I figure why add more chemicals to the mix

DavisD

I have a question for everyone. I'm in between round 5 and 6 (final) chemo. I seem to be getting unbelievably fatigued more quickly each time and this one is bad...I need to go back to work tomorrow but I have to focus to get off the couch and put one foot in front of the other. I keep thinking it's all in my head and I can just muscle through but not doing very well. Is anyone else experiencing this?

Also wanted to thank whoever posted the link on our FB page to the pollysponytails. I loved the idea and ordered one!

Hope everyone has a great Monday!

 

ninjamary

Diane, I'm on Taxol for my last 12. I'm between week 5 and 6 also. Infusion Thursday day I pass out in the chair (they have to physically wake me up) I go home and pass out again until around 6 pm. On the weekends I take several naps. I am more tired, but that is really the only SE I have so far.

wpmoon

Diane, I noticed a huge increase in fatigue from infusion 4 to 5, and then also between 5 to 6. It's not just you. My lab work shows a steady decline in my WBC and RBC counts, so that's what I'm contributing the fatigue to. I've still been working full time (4 days a week, 10 hr days), and it takes all the energy I have not to fall asleep there.

molly1976

Diane, I took vacation days on my last two down days and I was so glad I did. I tried to power through the whole time, too, but in the end it was really really nice to just take the day and sit around watching TV in my pajamas. I think it actually helped me feel less fatigue overall, too. Is there any way you can take even a half day? I bet it would make such a big difference.

I am driving myself crazy worrying that a stress fracture I had in my femur four and a half years ago was actually bone metastasis. Even though my tumor that was discovered in February was 1.6cm with no lymph node involvement and I realize this is completely irrational. Hello, Xanax!

IndyGal35

Diane,

I had round 5 of TCHP last Tuesday too, and it's kicking my butt. I got winded going up the stairs yesterday, and I got light-headed from just taking a shower. I keep telling myself that, barring another delay, I'll be recovering from this for the last time in 3 weeks.

pboi

Diane, I am pfc day 5 from weekly taxol and the side effects have definitely been cumulative. Severe fatigue really hit at week 9 and I noticed every week after fatigue and other side effects were worse and would linger a little longer. Unfortunately these past few days after the last taxol have been the worst, might get worse before it gets better. Maybe you can take a little time off work?

PB

Jackbirdie

Diane- YES! I'd write more but I'm too tired.. Haha. 4 was twice as fatiguing and painful (bone) as 3 and 5 twice as bad as 4. I think I see a pattern here. Want to see a pic when your new pony tail comes!

Also, I have it in my calendar that today is Shaz' last chemo. I sure hope so. She's been quiet again and that's usually not a good thing. I'm just hoping she gets to ring the bell today and can can begin her slow but sure climb back to health!

Shaz, if you can hear us, we are dancing in the streets for you!!!

🎉🎉🎉🎉🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🎉🎉🎉🎉🎉

SizzleStitch

I don't know if this is affecting you all with the terrible fatigue or not but wanted to tell you what I found out my next to last chemo. I would be good until after I finished my steroids, then wham! I would have such fatigue and felt like I would pass out. Well, I went home and checked my blood pressure....it was super low! I normally take a pill for high blood pressure so the next few days I would check my blood pressure in the morning and not take the pill if it was low. I ended up not taking it for about 5 days. The final chemo went much easier because I knew to look for this drop in blood pressure..not nearly the fatigue.

If you can, check your blood pressure when you are really feeling fatigued.

Also, just to let you all know, I am coming up to 4 weeks PFC (Thurs) and my fear anxiety is getting a bit better. It was really bad right after I finished Chemo. I have my PS and BS tomorrow. I am sure I will fell a bit of anxiety then but I am feeling much more like I can plow through it than I did before. :-)

Can't wait for all of you to be on the other side of all of this with me.

pboi

Sizzle, I'm 5 days pfc, and have a lot of anxiety about being post chemo, so glad to hear you are feeling better 4 weeks out. May I ask have most of your side effects gotten better after 4 weeks? I'm still pretty miserable today and know I need to be patient...but I need someone to tell me that it will get better!

PB

ninjamary

Ugh. Just got off the phone with my MO office. My blood results are posted to the website called Navigating Cancer RHOPA...something or other. Well June 4th and June 10th have not posted. I call medical records and she has them there so I ask...can you email or fax them to me? No. She is going to have the nurse call me and let me know what they say. Seriously. That's twenty (20) line items x 2. I'm a bit obsessed with these as my WBC is dropping on Taxol. Why is everything so damn hard with doctors. I truly think they use that HIPPA excuse far too much.

ninjamary

Well hot damn. Bitch on a message board, hit submit and guess who calls! I just asked for my WBC and the number is dropping. I'm at 3.8 on June 10th. Dammit. Well this explains the tiredness and getting out of breath easily. I just don't want to get off schedule. Hope my numbers are better this week.

Italychick

I think SandyE1 might be a spammer. SandyE1, if you are not a spammer, maybe some more information to clarify who you are since you just joined today.

SizzleStitch

pboi, I am feeling pretty well. I have lingering fatigue when I try to do too much. I also just lost some of my eyelashes which I was hoping wouldn't happen since I wore ice masks while having taxotere...but most are holding on :-). I have to say, I was lucky with the SEs though. I had a some not so pleasant times but not anything like a lot of you on the forum.

I am now just fixated on my hair growing...wish it was faster. I just bought one of those ponytail things mentioned before...it is so hot here in FL. I can't do the wig all the time.

Just take it one day at a time..I know it is easier said than done. ❤️

ninjamary

Italy...you're right she is. I just checked and she's posting that website all over the boards.

BBwithBC45

Ladies who use fake eyelashes - don't you have issues with the glue irritating the eyes?

I remember at the Look Good Feel Better they said not to use fake eyelashes and I'm getting to a point where I'll have to do something. My eyebrows are gone 70%, but my bangs cover a lot of it. Eyelashes are going, I have few "bald" spots on my eyelids.

Italychick

My stage 4 colon cancer wig lady said 4 vs. 6 is completely different. Most people can make it through 4, still experiencing side effects, but rounds 5 and 6 really take it out and the fatigue does accumulate. Since she has been through chemo off and on for the past 15 years, I assume she knows what she is talking about.

Round 5 hit me harder. I have recovered from the fatigue, etc. issues, but not the neuropathy part, which I can't do anything about except take supplements and hope it recovers. Noticed today that the palm of my hand farthest away from my thumb looks like it is getting ready to peel. So bummed, because there is nothing I can do to prevent this part of the situation from happening.

But hey, we are getting close to almost done with chemo! I hope I never have to do chemo again.

ninjamary

BB...I have had no trouble with the eyelash glue irritating my eyes. I've had these on for close to 9 hours and I'm good. They've held up better than my painted on eyebrows!

BBwithBC45

Ninja, do you have to take them off at night and put them on every day? Sorry, I'm very ignorant when it comes to fake eyelashes.

Also, I've had some blurry vision and eye dryness from the chemo, so I'm not sure how I'd react. Do you wear contacts by any chance?

Italychick

Ninjamary, I emailed the Moderators to get her off here. I find it disgusting when people use a site like this one to try to make a buck. I would like to pop people who do that in the face, I swear. Get a frickin' real job like the rest of us.