Starting Chemo March 2015

mysunshine48

Indygirl, What did you do about the constipation. It has been 6 days. No one told me that Zofran caused this. I have been taking one stool softener every day, but it does nothing. I am hurting with that, the bone pain and don't know what to do

shaz101

That's fantastic news BB. I really happy to hear it. Please brag away! I can just imagine how happy I'll be to get the last one out of the way.

My bone and joint pain is hanging on longer now. I'm in my 3rd week and I've woken up very sore in the hips. I've also had another migraine. I had one the night before too. But they're not as bad as they have been. Just disappointing.

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shaz101

Mysunshine I have terrible constipation too. Even with laxatives I go 5-6 days before going.

I take 3 coloxyl morning, noon and night plus movicol up to 2 sachets daily. This was recommended by my MO. I hope this helps.

Jackbirdie

My Sunshine- sorry for butting in but I am a constipation expert having been on opioid pain meds for 5 straight months.

The Drs rarely get this right but you need a softener and a pusher. One or the other will NOT work.

I take 2-3 Colace OTC daily plus 2-4 senekot. Every day. Lots and lots of fluids. Try to eat some steamed bricvoli. I once went 6 days without going and it was dangerous and painful. Once I adopted this regimen, despite the continued use of pain meds, I have never missed a day.

shaz101

Great to hear from you Katy 😍

I hope the worst is over for you. Just wish I could help xxx

Jackbirdie

Sharon- I am disappointed as well that you are still getting migraines and worse bone pain too.

We just have to hang on a few more weeks. Come on, hold my hand ok? We ARE GOING YO GET THROUGH THIS.

We will get to ring the bell too. Hey! Idea!

Anybody want to look for a bell charm?

Italy

Eileen

Bekah

Amy

Sloth

You guys are in this order. Maryellen says she will mail tomorrow so Theresa could be really rocking the do rag with an F by Fridsy!

shaz101

BELL CHARM ...what a great idea. It'll help balance the shit sandwich 😁and we're all going to be able to ring that one!

yes I'm A bit pissed off as I was sticking my head in the sand hoping that it was much better... and it is... I guess. They aren't as severe and the drugs are working.

Oh well. Just gotta keep smiling. I'm hanging onto your hand tightly.

SueH58

I go for chemo #2 tomorrow, and I'm more apprehensive than I was the first time. I'm hopeful my SEs will be as minimal as the first time, but I'm nervous I may get new ones. Wierd, huh?

Jackbirdie

Sue- I don't think any of us ever get over the apprehension every time. Wondering if there's going to be baloney again? Or something worse in the shit sandwich.

Never forget we are all there with you, sitting all around you, joking and laughing while you're in the chair. It's your protective F shield

SueH58

You're awesome Katy. I will think of that and it will help me get thru.

SpecialK

never - I second the Knitted Knockers - I just got one in the mail - it is super light and comfy.  I have recon on the right (cancer side) with a 650cc implant.  It is pretty big and heavy.  I am currently without recon on the left so need to wear a pretty large prosthetic to match it up - the knitted one is good all day. I live in Florida and it is already hot and the knitted prosthetic is much cooler. I was fitted at a mastectomy shop not long after having the left implant removed last summer and the bras they had were like slightly smaller bulletproof vests - hate them!  I found a bra by Anita called "Versailles" and I love them!  Very lightweight and comfortable.  Nordstrom will sew a pocket into any bra they sell for free and they have experienced fitters, they also do the same with bathing suits.  I also have instructions for converting any regular bra into a mastectomy bra if you sew.  Just let me know and I will post the video.

Beachbum1023

SpecialK, please post the video. Thanks!

IndyGal35

mysunshine, it's a fine balance for me. After my miserable bout with constipation last time, I started taking Dulcolex for a few days, then I took exlax at the end too. I quickly converted to violent diarrhea with cramping for a few days. I agree with Katy. It's best to stay on top of it with a softener, and I use the "pusher" now if more than 3 days have passed. In a desperate effort, I've used a bottle of magnesium citrate to force myself to go. It tastes repulsive and is NOT gentle, but it was better than enduring a painful BM with bleeding.

Bekah, how did your appt with the GI doc go? I still have the "glass shards" feeling with bleeding on occasion. Just wondering if that could be a fissure.

Don't forget to add me to the charm lineup, Katy!

Sorry you are still feeling rough, Sharon. I so hope you get lasting relief.

Sue, I'm nervous every time too. Each round has been completely different for me, so I still don't know what to expect. Nausea? Fevers? Diarrhea? Rashes? It's a lottery of crap in every bag. Hang in there. We are holding your hand

Trvler

Thanks, Carrie.

Constipation: Prescription med called LInzess. Not a laxative. Laxatives cause pain and cramping. Linzess is taken once daily first thing in the morning. You go in within an hour and you are done with zero pain. I have to take once a day dose of miralax along with it, also not a laxative. Laxatives will tear up your colon. I stopped the linzess for now because the med I am on to reduce inflammation to help the fluid around my heart has the same effect. But I tell you Linzess has saved my sanity.

Meme117

Congrats to those who finished!! Omg I want to be done too! Sue I get nervous each time also thinking of all the new shit coming my way but gotta do what we gotta do.

Sloth what is the tattooing? Also do you know if they will charge a copayment each day?

I started using eye drops and it definitely helps, so strange eyes are watering but yet they were dry. Can read again😀

Sorry Bekah your feeling so bad hugs to you.

My red cell counts are all low but MO thinks will come up by next week. Liver tests are low so may need to decrease perjeta won't know till next week. Going to the feel good workshop will let you know how it goes.

Here my other baby, her name is Taffy and she'll kill you will kisses😄

Jackbirdie

Indygal- never fear, you are on the list!

After the bracelet runs up the West Coast it will go to Shaz in Oz, then there's a group of ladies in the Midwest, including yourself, that will get it. Then Arlene in NY, and Avmom in Canada. I have 14 altogether.

I have been working on the list with chemo brain, trying not to screw up too much. Originally I had it in order of addresses received, but Sharon graciously deferred for a bit, and it made sense to save time and postage, and send it in "clusters", grouped by geography.

I agree the script Allison is talking about is great, and if you can get it from your doc, go for it. But for the record, Senekot is natural, made from senna, not an "engineered or pharmaceutical" laxative. I get absolutely no cramping or pain from it. If I haven't "gone" for six days, then, yes, lots of pain. But I blame that on volume issues. I know how awful this can be, and I wish anyone suffering a speedy relief from it.

Maryellen, sorry about the labs and hope the ship rights itself on its own. I hope you have a great time at LGFB.

Taffy is adorable

slothabouttown

Meme your dogs are adorable! The tattoos are placement markers for the radiation. At my appointment yesterday I got on the table and the techs did measurements and then had me lie in the position I'll be in for each treatment, hands behind my head. Then they inflated and formed this foam "mold" around my chest and arms so that each time I get on the table I'll be fitted into that form in the same position. The tattoos are tiny (they didn't sound tiny when they were using the tattoo gun!) But when I got home I could barely see them in the mirror.

I have reached my deductible for the year with my insurance and I've noticed I haven't been asked for a copay for a while. I don't know if that's standard?

Jackbirdie

Sloth- you are so brave. Just finishing chemo and already starting out on a new treatment adventure. My thoughts and mojo as always, are with you. You will do great.

The same thing happened with my ins last year and thus year, having met my out of pocket both years. They just stop asking for copays. One thing to note is, some insurances, if PPOs, have in and out of network. There is in my case a $1,700 higher out of pocket for out of network. I have already met both this year. Sheesh.

Sometimes, due to the timing of claims, you will overpay around the time you are nearing your out of pocket max, and may get some copay money back from a provider.

Leighrh

Hi Everyone!! Just checking in.  I read almost everyday to check in on all of you just having trouble getting the time to post! 

Congrats Amy!!!! I know you are so relieved!!!! Chemo DONE!

Bekah... I am so sorry you are feeling yuk... I hoped Taxol would be easier for you since AC took you down so much! 

Allison.. Sorry you couldn't start Taxol... hopfully they will get you hooked up today

Katy.. I am glad you are on the mend and cracking jokes.

I'm heading for my 4th and final round of AC tomorrow!! I am dreading it because I know I will feel yuk for a few days but I am so ready to get this leg of my nightmare OVER!!! Like most of you doing ACT I am hoping that Taxol is much easier and I will start seeing the light at the end of the tunnel. I do have Rads to do after all this but that is not even on my radar yet.

Hope everyone has a SE free day!

Jackbirdie

Leigh- Best of luck tomorrow and CONGRATULATIONS 🎉🎉🎉🎉🎉🎉💞💞💞 for making it to this milestone.

Looking forward to hearing you ring the bell tomorrow

ksusan

For constipation, try eating a tablespoon of coconut oil (straight or to lightly saute something). Works for me.

wpmoon

Thanks all to offered suggestions to help with sleep. I've been taking Advil PM every night for the last week, and finally sleeping better for the most part. I've tried melatonin before, and it used to give me horrible headaches. That was a few years ago, though, so not sure if it may have changed. Trazodone and other prescribed meds like ativan don't help, either. With the advil pm I've been sleeping 10 hours a night, but wake up really groggy. I feel like I can't get a handle on the fatigue. Walking up a single flight of stairs leaves me winded and tired. ugh.

I'm also having a really hard time focusing. I feel like I can't keep my thoughts straight. I met with my HR department on Monday to talk about options as far as taking a medical leave because I feel like putting myself first is the best option. I don't feel like I'm retaining much of my training because I can't keep my thoughts straight and I'm tired all the time. Because I've only been there 6 months, I can't use FMLA or my sick leave. So the rep is working with me to find a solution as far as keeping the job. I have some forms to take to my doctor this Friday to have him fill out. I'm just so exhausted. I feel really lost in life.

Trvler

Whitney: ARe you getting any type of counseling or therapy? I know I need it now and I think you could use it, too. Please ask at your cancer center because they can refer you to free services if they are available to you.

DavisD

Congratulations Amy! Hearing several of you ending the chemo portion of tx has lifted my spirits and I feel like there is an end to this. I had my fourth round yesterday and so far so good. Usually kicks in around the 3rd or 4th day. Now I can say I will be done with chemo in just 6 weeks! I am a little bummed about the Herceptin for another 9 months but at least I'll have hair and won't have to spend the entire day having chemicals pumped into my port...just a couple hours.

Allison-I'm sorry for the disappointing day. Hang in there girl we're with you!

Neverthought-Your concerns are very valid and I just went through feeling the same way...why me shit again. I hate to feel that way because I know it isn't helpful.

Katy-You're starting to sound like your old self How are you feeling?

Italychick

Whitney, I feel so bad for you, I hope things get more under control. One day at a time, sweetie. That's all we can do. My MO tried to push me last week to discuss things further down the road, and I told her I have six weeks left for chemo treatments, and I can't think beyond that yet.

I don't have any words of wisdom, just wanted you to know I will be thinking about you.

Trvler

Thanks, Diane!

I just got an email from my MO saying the blood thinners 'don't appear to be affecting my platelets'. I can't help but wonder if she was just busy yesterday because I was late and didn't want to start. I will just assume the best. Also, does anyone know what 'lymph' is? My levels seem really low.

Trvler

Nevermind. Dont' answer the lymph question. I referred back to my original bloodwork and it was normal. I am going to assume its the chemo.

wpmoon

Trvler, I started to go back to therapy, but my insurance company's therapy guidelines are kind of crappy. I've only been seen twice in the last 3 months by a psychiatrist. I need to look into therapists outside of my network because once every 7 weeks just isn't often enough. I need to look into more of the programs offered for cancer patients, but it's hard to find time to fit in with my weird work schedule.

Theresa, thank you for your kind thoughts.

molly1976

I'm sorry, Whitney! Hugs! You will get through it!

Trvler

Well, I have to believe you can get some resources at your cancer center.

I just talked to the cardiologist. Said the clot has shrunk by 50% and I have to take thinners the entire time the port is in most likely. I don't really mind as long as I know it is working. He also did some bloodwork which I was not really processing in my overloaded brain to see if I had an autoimmune disorder. All negative so all good news and a huge relief for me. Now I can go back to worrying about the fact that my tumor doesn't seem to be shrinking, although my MO says the node is completely normal sized. She said it was the size of an almond but they also had biopsied it so it might have just been swelling from that, too. Anyway. I feel relieved. Today was tough. I had that echo and I was hoping to see the doctor and get good news but he wasn't there. Had lunch plans with a friend and she cancelled at the last minute. I had turned down a mutual friend for lunch so I was ticked because I needed some support.