Starting Chemo January 2015

Brandi999

Spookisgirl - I remember feeling that the day before my WBC's shot up the first time. I think it's a common side effect from the Neulasta shot if you had that. It's about the right timing too.

UGH ladies!!! I cannot seem to get a handle on the constipation! I swing one way and then the other. I few nights ago I got very constipated again. Not quite as severe as when I incurred the original damage, but not far off. It was all I could do not to scream like I was being tortured in a medieval dungeon. I literally felt the sensation of ripping but there was no blood. I immediately took 2 stool softeners since I was told I could take up to 4, and I drank about 20 ounces of prune juice. Every since then I've had diarrhea. I was just in the hospital 3 days to get IV fluids for this. Honestly I cannot go on with this kind of pain for months on end. This is why I absolutely despise pharmaceutical drugs! Constantly dealing with side effects of them and chasing them around with other drugs.

Beachbum1023

Hi Brandi999, sorry the Big C is giving you so many problems. I had the same chemo and side effect but I got it under control with diet, water, and taking Sennokot the night before chemo and a few days after. I had loose movements, but it beat the other Big C or D. While meeting this problem in the middle, I used a lot of baby wipes. Yikes, what a pain in the butt! Walking seemed to help.

TeriMP

hi brandi999 that horrible to hear!! Have you tried any probiotics to help with the "c" issue? This time around, I took one stool softener the day before and day of chemo and are a bunch of activia yogurt. I have to say I haven't had constipation but not softest stool either, kinda like rabbit turds (sorry if TMI ). I hope the diarrhea will subside and you won't need to go back for iv fluids. Try to drink as much water and Gatorade as you can to replace electrolytes and nutrients back I to your body; I know you probably hear that lots!!

Hi beachbum, thank you for the advice with the duct tape!! I may have to try that when I run out of lint roller, I am amazed at how well it gets the hair out of my head. I too have always dyed my hair, but started letting it go natural the last year and was shocked to see white/ grey hair (I'm only 30!!); I told my husband I blamed it on him. I will be interested to see the color and texture it comes back as, I have light brown hair and curly, I am praying it will come in straighter as I hate curly hair. But that's how it usually goes, if you have straight hair you want curly and vice versa.

Teri

spookisgirl

HI all,

Thanks for the advice on the lymph nodes and radiation--until I see the radiation oncologist next week I won't have any idea what my real options are. Hopefully at least one of them works for all 4 doctors involved.

No neulasta shot for me, so I am not sure if my pain is related. Physio thinks I might have pissed off an old disc injury, which is likely since I have been sitting on my couch more that usual. Still a lot of pain today I have acupuncture this afternoon so hopefully that will also help get me back to normal. It hurts more to sit still than to move right now.

Cherylfg

I used the lint roller on my head and it felt so good. I also went outside and let the wind help me out. A lot of it fell out in the shower. It felt like it just poured out of my head. Luckily, that part went quickly and it stopped falling out in a day or two.

Brandi- have you talked to your nurse or MO about help with constipation? I'm also still having pain and bleeding but now, after this last infusion, I'm swinging more in D direction. The nutritionist atmy clinic suggestion eating more yogurt for the probiotics.

Kristin- thanks for asking about my sister. She said either way, they will remove it. Hopefully, her path report will be back soon. My boys love snuggling on the couch and love all of the TV time.

Cheryl

TeriMP

Hi spookisgirl, I heard that raeki is really suppose to help with the pain as well. Sometimes there are raeki masters who volunteer with cancer clinic and offer free services. This might be something to look into.

My friend told me last night that when get mom was going through Bc treatment Zantac wasn't really working for her heartburn so she would take a shot of apple cider vinegar and it cleared it right up. And to help with constipation she would drink coconut water as it is a natural diarrhetic

Teri.

SweetHope

Jenn, I cringed when I read about removing ALL your lymph nodes. Many of us have had complications from only having level one nodes removed. I beg you to have a second opinion, even a third. The idea of waiting on reconstruction sounds appealing too.

I would never want you to compromise your treatment on any of my recommendations, I just want you to be the best informed patient; able to make the best decision for yourself.

Brandi999

This is the most annoying part about it. I actually love cultured foods. I am used to eating them every day and even make my own sauerkraut. Yes I am a firm believer in cultures for a healthy gut. The problem is that most of the time my WBC count is so low that eating those foods can actually harm me. Yes, you read that right. I have to fear yogurt most of the time because my counts are so low that I can get sick from my own flora. During the days my counts are up I am eating up every cultured food I can find. In the meantime I'm forced to deal with it other ways. I just have to find my secret recipe that works and try to catch up fluid wise.

In other news I believe I found something natural that really and truly works wonders. I started oil pulling at the beginning of this to avoid the mouth problems. My mouth was in perfect shape. Then I went about 5 days without doing it and I could feel my gums losing their softeness and they were starting to erode. I started up the oil pulling again and got instant results. My gums were almost back to normal after just one time of doing it. No dryness, no sores or pain. That actually works. I'm really excited about that.

Mardea15

My chemo experience 1st 3 days

I was just diagnosed with Her2+++ BC mid-January & just had my first neoadjuvant chemo on 2/3/15. Had some heartburn during chemo relieved by Tums given to me by the clinic nurse. On the way home I ate 1/4 of a turkey sandwich then we stopped for gelato - it was so good! But later, I developed the most severe heartburn / chest pain I've ever had. I typically use Apple cider vinegar 1 oz mixed with at least 16 oz of water & sweetened with honey for heartburn. I originally used that to get off omeprazole for reflux, long prior to my BC dx. I tried that for the heartburn post chemo but it didn't work fast enough for me! I had to do several things that eventually worked that night - I took omeprazole 20 mg, took Tums- 2, elevated ny upper body on pillows & used heat behind my back. I drank maybe 1/2 of the apple cider vinegar mixture. After about an hour or so my heartburn was completely gone & I was able to sleep flat for the rest of the night. Drinking the apple cider vinegar mixture throughout the next day prevented anything more than twinges of the pain from heartburn.

I had other s/e's from the chemo & Neulasta on day 2 - severe constipation with abdominal cramping even though I had taken 2 Senna-S the night before, flu-like symptoms & had twinges of bone pain (Claritin & Aleve seem to work so far in preventing any major bone pain). I was eventually successful in getting past the constipation without taking more laxatives which I was afraid would push over into the big "D"!

Today on day 3 I am very tired with little energy but I ate eggs & toast & have not had any nausea yet at all. I am trying to track my s/e's each day, write them down & what I did for them so I'll have an idea of what to expect next time around for chemo #2 (2/24).

I read that a lot of people on the chemo regimen that I'm on don't get s/e's for a few days, so I don't know if that means I'll get over them faster or there is just a lot more worse to come! The last 3 weeks since my dx has been very stressful & scarey to say the least.

Beachbum1023

Hi I just finished chemo 11/25 AC/T. Just ask here for the answer to any question that you may have. Everyone here is super helpful. I tried to eat plenty of fiber, took Sennokot the night before and several days after as needed, and drink a lot of water. It really helps!

mommacat4

Jenn, when you mentioned your doc wants to remove all your lymph nodes, that scares me! . When is she wanting to do the surgery?

Maybe it would be best to talk to the rads onc before scheduling the surgery. I know my Ps don't want to do the permanent placement until after my rads because of the side effects of the radiation. He put my recon on hold until after my chemo and radiation treatments are complete.

Cherylfg, I am praying for your sister as well.

Brandi999, glad to hear of your successes. Keep it up!😆.

PMR53

Colorpurple. Thank you and yes I do know about Glutamine!! I have been using it. Right now the numbness comes and goes. I hope it's not permanent. Who knows what will happen??

Brandi999 glad your nausea better. And WBC too!! Your right about the friends. Family too. Take it easy though and rest. Mine comes back if I overdue it.

Have a good Friday. Rest. Feel good.

Patty

Cherylfg

I'm happy to report that my sister's path report came back negative. They aren't sure what it is so they are going to remove it, just in case it would have turned cancerous in the future.

I'm still really tired after my infusion yesterday. I've just been resting and resting. I had IV fluids today and will have them again on Sunday, to help with nausea.

Cheryl

jlstacey

I'm hoping one of you wise souls can help me. I had my first chemo on 1/29 and my Neulasta shot the next day. Tonight myy daughter was acting lethargic so we took her temp. She has a 100 degree fever. My husband whisked her away to her room. Do you have to stay away from her until the fever goes down?

Additionally, what thermometers do you all have and like?

Beachbum1023

jlstacey, I use a digital thermometer from Drug Mart. It takes 60 seconds to register but they said it is more accurate over the fast read ones.The fast ones have a bigger margin of error because it is fast. But I used it during chemo and I never had a problem with it. I guess it would depend on why she has a temp. But it probably is a good idea to steer clear of any illness while on chemo. Good Luck, I hope she feels better in the morning.

Lilone650

I am starting my adriamycin/cytoxan chemo on February 19. I would love to share experiences and what we learn. A friend of mine had adriamycin for Hodgkin's lymphoma and recommended eating ice chips about 30 minutes before, during and 30 minutes after adriamcyin to reduce mouth sores. Have you heard of that before

Beachbum1023

Lilone650, I drank cold water during the infusion, and several bottles after to flush it out. I also put a ice pack on the back of my neck so I didn't get that push headache. I always took a lot of snacks to chemo just to keep my stomach with food in it. I took Jell-o, fruit, celery and ranch, mac and cheese, cheese slices, pretzel sticks. It was all small snacks but I snacked all day long. I couldn't eat large meals, anything fried, or beef with gravy. Those still don't work well for me. Keep plenty of cold water, and popsicles worked great for me. Pick up a bottle of Biotene mouth wash, it's great for dry mouth and good if you need it for mouth sores. I still carry lemon drops to suck on for dry mouth.

Lots of ladies here are on AC/T, so post any question you have, you will have a lot of support!

Lilone650

Thank you beachbum1023 for responding. I have so many emotions with this because I was the one thatused to administer this medicine to so many people. I watched so many different reactions that it is on the range of everything will be fine to seeing violently ill people after it. I have decided that I will be good through this with the Lords help and my family and friends, but I think I need to have other people in my circle that are in this with me. Thank you for the suggestions. I will write them down. My brain is on overload. I thought that maybe my ONC would back off some of this with the reports I got but she wants to throw the book at it she said. I will post updates as I begin this journey.

Beachbum1023

Lilone650, you are very welcome. We all have lists of what we had to beat the side effects. Are you a chemo nurse? I love mine, they know everything. They are so compassionate, kind, and caring. It does make going to the infusions way easier when I know I have "my" nurses watching over me. It is fantastic to have a close circle of support, but you will read a lot here about the love and support you find here. We all get it. I know I have friends that have become very distant, and some have disappeared to drop in from time to time. It is hard to describe this whole crazy disease, and how lonely it can be. But we will all help you. I too have the whole book thrown at me as well. I had AC and Taxol dose dense. Then I had surgery and now rads. After that I hope I have a break to enjoy summer. With the AC the side effects usually hit around day 3, but everybody is different. Most are taking Neulasta injections the day after chemo, and usually Claritin helps if you have aches and pains. The MO will give you scripts for the nausea meds. Post any questions and you have a lot of answers!

dstar

Spokisgirl,

Here is an article from this site: http://www.breastcancer.org/research-news/20131107...

It should talk you to an article where a recent study shows the radiation of the axilla, rather that surgery, cause less lymphedema than surgery and is just as effective. I will have to have a lot of my lymph glands blasted with rads because my tumor was so large, under my arm and across my breastbone. I found the article helpful and it made me less afraid. I went to a PT and had a lymphema teaching. That was important too.

Hope this helps.

Dana

loriekg

Hi Lilone650! I plan on trying the ice chips this coming go around (#2). I didn't know about it my first time, and didn't really have mouth sores, just a very sensitive tongue and mouth. I thought I just needed to do this during the actual Taxotere drip (instead of 30 min before and after)…maybe it's different with Adriamycin? Also will be armed with bags of frozen peas (for nails) thanks to the suggestions from the ladies here!

loriekg

Mardea15…my side effects were the worst from day 3 through day 6. The night after my Neulasta shot I was up all night with severe abdominal cramps. Felt like I was going to have bad diarrhea, but I never did. Maybe I had taken the Imodium early enough to prevent that. Then the next few days I just felt like I was coming down with the flu—very achy with bone pain. And no energy or motivation. One week from treatment I was pretty much feeling back to normal. Well, still had nose bleeds, not much appetite or only for bland foods, and very dry skin but nothing like the first week. I did have strong heartburn for a few days too; glad you found something that works! --Lorie

Lilone650

beachbum1023: I was chemo certified when I got my nursing license in 1998. I haven't had that job in a while as I now teach nursing. I have kept up with the news about all of it because i teach chemo and radiation, all of the leukemias and blood tumors, and all of the thoracic tumors. I can remember sitting with my patients while they were receiving their meds and just wanting to hold them tight and make it all better. I named my youngest daughter after one of them. I know the love from all of you here will be tremendous. Thank you.

Do the cold caps really work with all this chemo? I Was planning on just shaving my head and being blissfully glad that I am bald! I have about 2 feet of hair that would be difficult to deal with.

I think that my journey in nursing was to help prepare me for this but it's so different being the person receiving it. Nursing just left my brain when all of this started except for the knowing too much part. That makes the beginning of all this way to real and scary.

Loriekg: thanks for the tips about the frozen peas! I will try that one too

Mardea15

Hi Loriekg, thanks for letting me know how it went for you. At least I have hopes that this will improve before I get chemo round 2. I was very careful with taking Senna for constipation, but even so, I now have the big "D" today & am now taking Loperamide for that. Hope I can get it under control quickly. I really don't want to end up with dehydration & all the difficulties around that! I also have flu-like symptoms, now with slightly elevated temp. Will just keep looking forward to feeling better soon!

Looks like you are a little ahead of me in your chemo cycles but getting all the same drugs. Sorry you are having to go through this. Lots of hugs to you!

SweetHope

Just checking in. It's Day 4 of Round 2. Sleeping a lot, ears ringing, bone pain under arms (it feels like someone is trying to pick me up by my armpits), and nothing more.

JoeyJamesMom

Hi, Lilone650 :-)

I had AC and Taxol and the Penquin Cold Caps worked very good for me.

Granted, my hair did get thinner, but no one would ever know that I had chemo, if I didn't tell them because I have full coverage.

Thank God, they worked. Chemo put me into menapause, so that hot flashes would have prevented me from being able to wear a wig.

If your interested you can search the board for something like; Cold Cap Users Past and Present.

I wish you luck with whatever you decide.

Lynda

Beachbum1023

Hi lilone650, I hope you find wonderful chemo nurses like I have. I am so sorry that you have to see both sides of this. I am sure this side is all new to you. But you have found the best place to be. A lot of love, and support will follow you through. Even though you may know way too much from the nursing side, we all have great tips, and lots of interesting conversations when our bodies act like they are possessed. I never knew how distressing poop could be, either not enough or way too much. But we all have a way to fix it, and eventually we do laugh!

I had a real hair wig made, and I shaved my head after the first round. Since my wig matched my hair, nobody knew it was a wig. They just all thought I had a new color and trim. I actually get more compliments on my wig than my own hair. I do love it though, I wash her once a week and style it with a flat iron. So very little effort on my part for great hair. And it cost just about the same amount I spent on my hair for the year. I just like to toss her on and go. Super easy for me. My hair is now about 3/4" and growing back pretty quick. My eyebrows are back, and the eyelashes are looking good. They are actually very full and I can wear mascara now. I did go to the Look Good Feel Better program sponsored by the American Cancer Society. It has a lot of great info on make up and wigs and scarves, and the make up kit is really very nice, and FREE! The info is on their website. Just call and register. Or your cancer center will probably have the info as well. I had a lot of fun, and I love the new make up. One more trim and my nails will be good. I used clear sparkly polish on them to hide the funky color during chemo. It does help to buff them and use cuticle oil to keep them looking good.

Ask any questions, we are all happy to help! Have a great Sunday.

SweetHope

It's Day 5, Round 2 and I feel I am gaining strength back and bone pain is gone. I'm wearing my new $8.00 ebay wig that just arrived and DH is now totally convinced that chemo has left me brainless. It is this cute boy band, long bangs, bleach blonde shag. I only bid on it as a lark and won. It is perfect to wear for the fringe under a baseball cap, but alone it is hysterical.

Lilone, I have only seen a snapshot of what you have seen in the Infusion Center. Yes, it must be scarier for you than most of us. But the best advice I can give is to repeat what I have learned from these Warriors..."Don't go there 'til you get there." That can be hard to do but it works. Just listen to your body and not your brain!

Would you please post your DX. It explains so much about each of us.

thecolorpurple

Hello my friends!

Cheryl, so happy to hear about your sis! Great news, phew.

Brandi I have a suggestion, but of course it is only a tip based on my own experience.... I take a tablespoon of "Natural Calm" powder in water every eve before bed, It is magnesium powder and it tastes great in water. You can get it on amazon much cheaper than the health food store. I recommend raspberry lemon. This stuff truly works, Brandi. Good to take right before bed, it's a nice nerve tonic, helps ya sleep. It keeps you very regular and it's great for you. MyOD says it's fine to take.

Sweet Hope, it sounds like you are having a much easier go this round? Glad you found a cute wig!

I am in the middle of work stretch and feeling great so far. 2nd DD AC treatment weds... Will keep you posted.

Thinking of you all and wishing all the best

Love Kristin

Brandi999

Thanks thecolor purple! I actually have that stuff already. I take it for the times I get muscle cramps in my feet and legs. Love that stuff! So far I seem to have found my middle ground for the moment taking the 4 stool softeners a day. I'll probably up the ante on the morning I have chemo to try to keep that going and a few days after.