Anyone Starting Chemo in June 2016

Jiffrig

Seq, fatigue gets worse but I found nausea, etc does not

seq24

Jiffrig- does the fatigue get worse as in extremely worse to the point of being unbearable or is it minor enough that an extra nap can take care of it? That's great about the nausea does not get worse though. I know, I know, I am always looking for ways to plan ahead and I hate the unknown. Sorry for all of the questions on here all the time. Everyone here is so helpful and I thank you!

Jiffrig

no, no, mine is not horrible, just worse. I am going for my 4th AC Wednesday, so I am further along. I think taxol is the most tiring. That's next for me. Glad you did not have all the other stuff! You will do great, good start

labscientistmom

seq24: just from everyone's postings here, every person's body deals with the chemo drugs differently. I am so glad that you are tolerating it well. Watch out for the killer reflux, it can be bad. I had taxol first, so maybe its a carryover from that, but after my second AC now, it seems worse this week. also on the big D side of gut issues, and make SURE you stay on top of your nausea meds. If you forget one, you might regret it. I think the second round was a bit worse for me than the first. I am thankful for each reprieve and thankful for every good day. blessings, A

labscientistmom

bbg: bigg BIGG hugs from me to you, will be praying for you tomorrow. Be stong and brave, deep breaths, you can do this!!! love you my sister, you are amazing. ((hugs)) A

Heathet

Moondust - I have 2 more treatments to go. My 5th one is this Friday then one more after that. The worse part is the overall fatigue ! It seems like all my muscles ache and the smallest activities tireme out! The fatigue is so hard to deal with because I'm usually a pretty active person. Feeling a little down about it.

KNardo88

Seq,

I did AC, and my MO and nursing team all advised me that however I feel the first round will be pretty consistent through the remaining 3 rounds, but that the fatigue aspect of it may be cumulative, so rebounding from the treatment may take slightly longer each time. I found that to be true in my case. I'm SO glad to hear that your SE's have been mild so far--- if you are at day 4 and have only experienced some dizziness, then I'd call that a HUGE victory! I was more or less steamrolled by AC, and needed a solid week to recover from each round. I hope the mild SE's stay mild and that you power through the subsequent rounds! Way to go! :

seq24

KNardo--Oh thank you! That is encouraging. I'm on day 5 now and today has been not so great. I had steroids to take for 3 days after treatment. I ended those yesterday but today I'm really feeling the effects of coming off of them. It hasn't been fun. I need to see what they can do to eliminate this horrible feeling. After AC I still have to do Taxol and am getting varying stories on that from the dr's and nurses. Some say it's easy, few side effects, etc. Others are saying it gets worse and worse till its unbearable and most people are waving the white flag. I don't know what to really believe.

KNardo88

Seq, I didn't have Taxol-- Just the 4 rounds of AC, but I know MANY of the women here have had your same regimen and can share their experiences with the Taxol! I've heard rumors that it is easier than the AC, but truthfully I've also heard from a couple others say that they found it to be the other way around. I'm sorry to hear the AC SE's are ramping up a bit now that you're on day 5... What steroids did they prescribe to you, is it Dexamethasone (Decadron)? That's what I was given, same as you, for the 3 days following infusion... I found it made me feel legitimately out of my mind crazy, and coming off of it was even worse! I guess it's a necessary evil, but MAN, I did not like that stuff. Make SURE that you are staying hydrated!!! It makes a huge difference, do not let yourself fall behind on water intake. Keep up with the anti-nausea meds, and also keep up with Colace/Stool softeners... The anti-nausea meds are known to cause bad "Big C"!

seq24

Knardo-Believe me I am drinking so much water! I'm pretty sick of water at the moment but know it's important. I was taking dexamethasone. They gave me some in the IV during infusion, then I had to take it for 3 days after. Yes, I felt this afternoon that i was literally going crazy, and the shakes, and dizziness and the list goes on. It wasn't too bad while I was taking it but coming off of it today has been horrible! I have not had to take any nausea meds since Saturday, the day after treatment. I only did it because the nurse said I had to as a preventative. Didn't like the way I felt on that either. I hate feeling sleepy and dopey in the head. Hopefully tomorrow will be better! Thanks for all your advice.

Anonymous

well done Seq for getting through your first chemo. I'd agree with Labs in that every single person is different. But I did read an article recently that said those who believed they'd have no chemo side effects tended to have none. So just say 'NO'. I had little or no effects at all but I was on FEC. I had two bouts of sickness in total in 4 months and just a bit of constipation for chemo 2. That was it. Stay in as much as you can during your nadir period and eat small portions as often as you can manage. You will get through this no probs.

Little-Red-Corvette1

Seq24 Congrats making it through #1. Lab mom is wise everyone is different. Dolly is right as well- a positive mind is effective as well. I freaked in the beginning as well. Went through every SE and had the kit prepared. I did not use most of it! What I did use I used faithfully! I listened to my MO and he was right on target most times. The AC was not cumulative, but did have a few bumps. I did not take oral steroid pills though. Just with infusion. They took me through the first 3 days then crash.

My MO told me most of my SE's were from the Neulasta!

I started the taxol Monday. Had to take 2 decadron steroids the night before and the morning of. I had no reaction so I can cut down to 1&1 next week. The MO said the dose of taxol will go down weekly as well.

Just found out after 11 more rounds of Taxol, 30 rads- 5 a week for 6 weeks AND IM DONE! 18 WEEEKS!!! AND I GET MY LIFE BACK!

This will happen for us All!!!!

Little-Red-Corvette1

Went to a beautiful place last week called Marys place by the Sea. It is a retreat in Ocean Grove NJ for women with cancer. They offer reiki massage, oncology massage, yoga, nutrition class, counseling, and just an all out relaxing gentle atmosphere 1 block from the beach.

Moondust had asked how the nutrition was going. I just wanted to say I learned about A women named Kris Karr who was diagnosed with stage 4 liver cancer who defied the odds. She wrote a book called crazy, sexy, cancer. She calls whole foods her pharmacy! I'm trying to follow that right now. She has a cookbook. It's hard. If I can do 50% it would be good. It's acid vs alkaline. Mostly a plant based diet. No sugar or dairy or coffee, only Organic, non antibiotic or steroids!

I also had an oncology massage. They are designed for BC patients for the prevention and treatment of Lymphedema. It was wonderful!

So happy to hear so many of you finishing up! Dolly and labs how many more? Bbbs you had surgery?

Love and Positive Vibes to All

seq24

Little Red--thats great news! There is light at the end of the tunnel! Your treatment sounds the same as mine--exactly. I'm not so optimistic to see that light just yet with only one infusion done. I am encouraged that the AC was not cumulative. I was worried about that. I am also thrilled with the news on the Taxol. I know someone who is almost done with Taxol and she is having a very hard time. It is cumulative for her and with 2 more to go, it is unbearable for her. Can you share what SE you had from the Neulasta? I thought I had escaped those, but maybe what I am feeling is from that instead of the steroids. Whatever it is, it was awful today. Finally feeling like myself tonight.

Dolly--thanks for the feedback. I had heard that as well that if you believe you won't have SE then you won't. I was told I would have every possible thing so I couldn't even begin to believe that. I wonder if that works for hair loss too. Now THAT is what has me terrified out of my mind! I totally agree with eating small portions. I learned quickly that a lot of the dizziness I had from the nausea meds could be relieved by many small little snacks throughout the day.

Little-Red-Corvette1

Seq24 I was more nausea in the beginning of the AC and then I would have that crash by the end of the week. I could go out every other day. My white blood count was actually too high from the neulasta so he kept reducing it. And he said my hemoglobin was a little low which would make me tired more. But I was able to do things. He told me my hair would begin to come out day 16 to 19. He was completely right. It started to just alarmely shed on the 16 th day from when I started chemo. I got my hair cut reallllly short it was good. Then on day 19 ,3 days later all I did was pull a piece and it came out like butter. So no way was I brushing it. My beautiful hairdresser buzzed me. I got some cats eye glasses and that was it. I actually wished I just buzzed it once. I'll let you know how the taxol goes. Please let me know how you are feeling!

J

Little-Red-Corvette1

ClarkBlue

seq - see if you can taper off the steroids over the 3 days...maybe have onc write a scrip for a lower dose that you can take the last days? I'll bet that would help A LOT. I believe someone on here did that and it helped tremendously!

I'm guessing that by now the SEs you are experiencing are from Steroids and not Neulasta - but I could be wrong. Be sure and take the Alleve to help with the bone pain - it works. :-)

So glad to hear that you did so well - I would say that both nurses are correct. The idea is that the side effects you have from your first one are probably all you will have, BUT those side effects may get worse - but not unbearable) as each treatment progresses. I found that to be true - as each treatment went on it took me longer to recover from. BUT, it's doable!!

-Keely

ClarkBlue

Rev - so good to hear from you!!! No apologies necessary for the negativity. If you can't bitch here, where can you??? We get it... I'm so sorry you're still sick..

What concerts are you going to?? Music - especially live music, feeds my soul... have fun!

I am up for endocrine therapy after radiation - been doing a lot of research on it. What have you found? I refuse to freak out about it - I need to just get the facts, make a decision and be okay with it. I am leaning toward just Tamoxifen until I get a little older and hit menopause. Most of the research I've seen seems to point to switching to ovarian suppression AFTER menopause. So maybe 5 years for me??

-Keely

seq24

Thanks Keely--I am 100% convinced that all that yesterday was all the steroids and nothing else. I will definitely be addressing this at my "toxicity check" appointment tomorrow. I have talked to several people and very few get steroids to take at home in addition to the ones they got during pre meds at infusion. I can honestly say I never had any nausea, mouth sores, or anything else they told me I was sure to have. I only took the nausea meds the day after treatment just because I was afraid not to. The following day I took nothing and my daughter and I went shopping. My next treatment will be on the 23rd. Thanks for your input!

Acie

hey everyone... Ihave a question for you all. Has anyone else had trouble it's neuropathy? I have it in my hands and it's extremely painful. I have medication which we just increased. I am worried they may need to reduce, pause, or even stop my chemo (taxol). I am very curious to hear your experiences. (cross posting on FB)

Anonymous

Hi everyone,

I had written a huge answer here last night but lost it. So will catch up again tonight. Glad to see everyone is doing well. Acie, why no steroids for you? I did not know that you did without them! I did no Steroids too but still have gained weight due to the 60mg I had in infusion. How have you done with weight

Anonymous

Seq,

I do believe steroids are the devil's whisky!!!! I refused them. And I had zero SEs. I know they do do good in some cases but for me I would have been even sicker due to my type 1 diabetes. My sugar levels are sky high after infusion day like in the 20s when I'm usually sitting at blood glucose of 5! I was shooting up insulting like a junkie!!

Moondust

Dolly, how is the gym going? Are you making it a habit yet?

I am five weeks out from my last infusion. I still have some fluid retention, although most of it seems to be in my breast, which is huge! I think it is half again as big as the normal one. After rads it was a little larger, but now it is worse, I think due to chemo. They keep saying it will eventually shrink but I am not happy at the moment. I'm very lopsided! Next Tuesday I am going to the new lymphedema specialist at my cancer center. I spoke with her and she said I possibly have "trunkal lymphedema". My arm is just fine. She said that lymphedema in the breast is easier to control and she can give me a home program. I'll report back when I know more! If all else fails, I WILL have a reduction done on that side, but I will wait at least another six months.

labscientistmom

Moondust: the lymphoedema Phys therapy will help a LOt, but also ask that person about a "swell spot" its a freakishly large quilted thing that you wear wrapped around your breast and underarm while at home, (because NO ONE would agree to wear it in public!!) but it helps!! I had that too, and wearing the swell spot thing at night is helping.

headed to sleep, more tomorrow, A

boobsBgone

sorry it took me a little longer reply. I love hearing that everybody is ending with their side effects and chemo treatment. My surgery went well. The problem I had was the anesthesia and medication side effects. They were going to release me that same day, but I passed out so they admitted me. Later that night I passed out again where I woke up to four nurses we're trying to get me off the floor.

That was a frightening night. So they kept checking on me and finally released me yesterday afternoon. So I am home with my drains doing what I can to recover quickly. Hubby has been fantastic. I cannot change my own drains because it makes me sick. I have a super weak stomach for everything apparently.

I wish you all the best and So glad most of you are doing well

Little-Red-Corvette1

BoobsBgone So glad to hear from you! Yes that sounded very scary. So glad your husbands taking good care of you! Prayers and blessings. J

labscientistmom

yay, BBG,so glad to hear that you are home and doing ok. Changing the drains is icky, no doubt about it! What a blessing a helpful husband is!!! Be well, take it easy and hlpe you continue to improve. {{hugs}} A

labscientistmom

bbg: that is supposed to be 'HOPE" you continue to improve. I will have my 3rd of 4 A/C chemo on Tuesday. Almost done, huzzah! A

boobsBgone

Labs, glad you are almost done,

I had a small setback today. While he was helping me shower I passed out. Thank goodness I was already sitting in a chair. It was again very scary. He said he couldn't wake me up to close to 5 minutes. Not sure what's going on. It took about another 15 minutes to get enough strength to get up. Finally after more time went by and made it back to bed. Hope everyone is having a better day than me. This too will pass

Moondust

BBG, that is really scary I hope it doesn't happen again.

Labmom, I'm so glad you only have one chemo left. You'll be done before you know it!! Hooray!!