Starting Chemo January 2015

Ladies,

Happy to report that my first cocktail (my way of seeing this as something I love!) infusion was completely uneventful. A little long, between the questions for the pharmacy, a visit from the dietician who confirmed that I can still take fish oil (which I was already taking a long time ago but will be a bonus for menopause and especially mood swings if any) and vitamin D (my doctor told me tha studies show that it may be vitamin D, not calcium, that id having the beneficial impact on our bones, and that all women over 40 should take 1000 ui per day). I went in there with my camo bag filled with all sorts of stuff for an army - next time I will do as I travel - light - with only a bottle of water, a box of kleenex and a snack, as it will not be longer than 2 hours I am told.

Felt fine for the first part of the afternoon, went home with a slight headache as if coming down with the flu and have been reporting to my family and dozing on and off on the couch since then. My plan is to listen to my body for the first days and not to do much.

Hydranne, how are you doing? And you, TeriMP and Hopefulmomof? I envy those who are able to address more people in one post - re-reading all the posts online after reading them one by one in my inbox just makes me completely frazzled so you'll have to forgive me for not having a kind word for everyone specifically...

Wendy aka RVgal, so sorry your cycle #2 is postponed! I know you are doing everything right but I will share my new mantra with you - eat well, sleep well, exercise is all I am going to focus on in the next three weeks, to give my white cells all the help in the world. i know it's easier said than done and you are probably already there... But what could you tweak to push the count back up?

Finally, for you Michelle, if you read all the thread and the threads of people before us, you will see that albeit we are miles apart and different personalities, on average we all go through the same anxiety, including not wanting to tell many people, being scared by the wait between the next steps and getting a new ball thrown at us, etc.

Well by now I am sure you know that you found the right place, and with sharing and asking questions here, hopefully the fears will calm down and day to day will seem easier - my DX is similar to yours, and I have come to think that I am completely disease free, except that chemo will kill anything nano left in my body that the human eye or a machine would have not detected. A CT scan highlighted a few minute issues but the doctor insisted on one more procedure that also came back clean - do you know how many times I asked the GI if he was very sure that my colon was fine?!?!? I was convinced it was, but ready to reset my brain and process the new info if needed...

I will actually wait until I am done Chemo and rads in the summer to get a bone scan. The CT looks at everything, including your bones, but the PET scan I believe is specific to bones, so the. i will consider myself done for life with this thing! If they don't do it a nurse suggested I do it on my own at a private clinic for true peace of mind. Now I am just not sure how much that would cost in the US but I know it's not too bad here in Canada.

As far as side effects go, I cannot say much as this is my day one, but you have to remember that they must disclose everything, including the fact you could die, on those long information sheets. Well I laughed a lot at this very line because three years ago I did skydive in tandem, for a charity fundraiser, and they said the same thing over and over and over for the entire 10 minute intro video. So all of this to say that you very unlikely have ALL the side effects - it's just that you cannot pick and choose which ones unfortunately. But talking things out with my MO and nurse, I felt that I was ready as I anticipated some of the most common SEs mentioned on this forum. I read everything carefully, took tons of notes and... went shopping.

So far just thanking the universe for apple sauce mixed with cottage cheese and... Pretzels. I cannot think of anything else I would want to touch for fear of not keeping it down. I will go by popsicles tomorrow for sure as suggested by one of you but they're just hard to come by in winter at the convenience store!

The dietician also said to up the protein to better support my body so I will go buy greek yogourt and start eating quinoa pilaf cooked in chicken broth more often (yummy, fast and... Protein!). Alas I noticed my tastebuds are off already! Everything tastes more of the one bad taste and nothing of the original good taste. Oh well, small price to pay :0)

I wish you I a great, SE free weekend!

Marjorie aka Tennisfan

Hi RV6gal, do you have a Neulasta injection after chemo? Eat well, and lots of liquids to stay hydrated. I hope you have a peaceful weekend.

mommacat4, do you have shortness of breathe also? I would make sure your MO knows the side effects you have, and when they started. If they did not give you the info, you can get it at chemocare.com. I also had the pounding heart and blood pressure readings that were either all over the place, or dropped low. I did have a red face on Taxol only. I hope you feel better!

Michelle,  I'm on Taxotere and Cytoxan and had my first treatment in early January.  My worst day was Day 3, when I got a sinus headache with nausea. Other than that, I had achy bones and muscles but the SE were very manageable.

What you are feeling is very common.  I also had positive nodes and spent considerable amounts of time worrying that cancer was lurking everywhere.  I paid attention to every sensation in my body and even experienced the same bone pains you described. My MO ordered a PET/CT scan, mostly to put my mind at ease.  Do you think you can ask your MO to order one? To me it's a win-win: It will either alleviate your fears or give the doctors more information with which to treat you.

As to asking for more node dissection, my MO and BS both say there are studies showing that removing more nodes does not increase survival percentages and can cause more problems for you, such as lymphedema. They explained to me that any remaining cells would be taken care of by the Tamoxifen, and in my case, the radiation and chemotherapy. I feel better when I remember they have a triple-threat plan and that they feel confident in their treatments!

It's definitely a roller coaster ride, and some days it is still very easy to go to the dark places.  The worry is exhausting, and I finally decided I've just got to trust my doctors.

Hang in there!

Hi TeriMP, my chemo nurses suggested taking OTC Claritin for the aching and bone pain especially if you had Neulasta 24 hours after chemo. I know BC is something we all suffer through, but we really don't have to suffer! I always put a ice block on the back of my neck to help the headache. Popsicles sdeemed to help also. In other words, whatever works! I hope you feel better soon. I had Taxol and had the red face flushing for about 24 hours or so after the infusion. Day 3 and 4 was always my worst, so take it easy. Cold water helped also to stay hydrated.

Happy to report Day 2 was rather uneventful for me. Normal meals, albeit food and drink do not taste like much. Slight queasiness always stops the minute I eat something so I will try to keep nourishing my body with smaller meals/snacks throughout the first few days.

Definitely positive but slightly sceptical so not saying Halleluia until at least day 6. Fingers crossed!

Have a nice sunday ladies!

Marjorie

Hello all!  I posted on my first chemo day on Thursday with anxiety and nerves. It wasn't as bad as I expected except for some financial issues that I had to deal with-that just amped my emotions all over the place. But once everything was said and done,  it was uneventful. I felt like I was kind of in a fog for the rest of the day. 

Day 3 after chemo ,& I was ready to sleep all day. Realized that I was told to TRY to at least walk for a bit to do some sort of activity. So I dragged my but off my couch and went for a 30 minute walk with my kids and hubby. I realized during my walk that it was mind over matter. I pictured finishing my walk & then heading straight to the couch for an hour long nap! Lol. I feel better for it.  Don't know how long I'll be able to keep up But I'm going to at least try. 

Momma cat-As I'm reading your post-I experienced the SAME symptoms as you with the heart pumping,  headaches and all that stuff. I swear it's exactly the same thing I wentthrough.   I'm doing better now. I just have the dull headache that came back :-(.  I need to increase my fluids cause I've been slacking off a bit.  

Not happy that we are in this situation but glad to have everyone s support and ears. Thanks for listening!  Here's to minimal SE! 

Sweethope-I didn't realize I hadn't made it public. Oops.

Good evening everyone! I was a constant snacker with the AC. I chewed on celery, mandarin oranges, jello cups, pretzels, apples, just about anything so my stomach wasn't empty. I always felt better when my stomach had something in it. And lots of water. If you notice any issues with shortness of breath, weird heart reactions, mention it to the MO or nurses. AC is rough, and you don't want any other side effects to appear. By day 5 and 6 you should feel better and ready to heal up before the next round. Chemo is cumulative, while the side effects stayed about the same and manageable, the fatigue was rough. I slept a lot and was still dead tired. All of the chemo info is available at chemocare.com if you don't have it already. I used that to keep an eye on the side effects.

Hi RV6gal, so you don't sleep much either? I'm not sure what time zone you are in, but it's 1am. I had Neulasta injections after every chemo (8). But the cost is crazy. My insurance is billed $4,780 for every injectiodon. But my blood counts are always good, and never missed a chemo. But the last Taxol I requested a 1/2 dose of Neulasta to chill out the bone pain. And save some major money for the insurance company. I ate a lot of chicken, and plenty of green veggies and fruit. My nurses pushed eating proteins.

Hi Sweethope, how are you? Still starting chemo the 20th?

Good morning Sisters! I am so indebted to you all for sharing your experiences with this stage of the cancer journey. Yes, I do start chemo Tuesday (port placement tomorrow). I admit I am a bundle of nerves. But I can't explain why. You all seem to be doing so well, even with the "Red Devil" adriamycin. I hope I am not the first big, whiney baby on this thread.

My DH and Dsons have been cleaning the house! Even scrubbing the bathrooms! I couldn't be prouder! Or more grateful.

I've got my supply of pain meds for port, nausea meds for chemo, frozen peas for fingernails, Popsicles, soda crackers, apples and such for munchies, and a bag of Cheetos cause I love them. I hope they taste the same next week.

My sister even prepared a bag of goodies to give to the chemo staff. She is such a dear...never goes anywhere empty-handed.

Hope you all have a GREAT day.

Hi PMR53, I hope you do feel better today, you should be getting out of the fog. I took Senokot the night before chemo, and usually for the next 4 nights to make sure I didn't have any bowel issues. For fatigue, you just have to sleep and rest no real fix for that other than time. For achy joints and bone pain my MO suggested that I take Claritin to ease that, and it worked well for me. I started that the morning after chemo.

The food issues, I ate what I could, small portions but snacked all day. Yogurt, mandarin oranges, apples, cottage cheese, 100% grape juice, chicken soup, all in small amounts. Stay away from your favorite foods, you may hate them after chemo! I struggle to eat mac and cheese now! I have a hard time with any beverage that is carbonated now. But I still drink a lot of water, and less coffee. I also used plastic forks and spoons and paper or styrofoam plates, cups, and bowls. No taste issues, and no dishes to deal with.

I kept a list of all of the SE's, and what I did to relieve them. I took it to chemo the next infusion and my nurses and I made a schedule of each SE and what to do when to relieve it. That way I didn't forget anything to tell the MO, but it kept track of my meds as well. I live alone so I had to be on top of it. I never waited for the side effects to rear up, I just used a regular dosage schedule to get me through, and off to work on time.

I had a hard time remembering what to do when, but I had my schedule worked out and approved by my care team. Thankfully the chemo did get a little better each infusion, I was better prepared for each one. You could try Biotene mouthwash, I never had any mouth problems, and I sucked on lemon drops. Still doing both! Take care, I hope you feel better!

Thank you RV6gal and Beachbum! I drank Senna Tea and that has since helped. I have taken a Claritin everyday since last Tuesday. I think I just got it with all SE. They can build up and get away from you fast. I am going to plan my chemo #2 for a Thursday so my day 3 and 4 will be on the weekend when family home.

RVgal, have you had any problems with sleeping just since your MX on right? Did you choose any reconstruction? I am thinking that way when I have my surgery in Spring.

Bless u all.

PMR53

PMR53, I have not had any reconstruction yet. I'm not even sure if I will at this point. I was a tummy sleeper before but had to learn to sleep on my left side since surgery. I was starting to sleep a bit on my right side alsobut now can't because of the port. Now sleeping on my left side has been a bit of a a struggle as I can feel a bit of tugging at the vein in my neck. I try sleeping on my back propped up on pillows but it just feels so unnatural to me. I'm hoping that it will become more comfortable as time goes by!

Lorikg, I am totally with Beachbum in not wanting to freeze while going to get my cocktail. There are numerous othernways mentioned by posters that also seemed to eork. i personally ordered Evo-Nails to protect them but other ways other ladies mentioned like tea trea oil, sweet almond oil, and even just nailpolish to protect your nails...

Also, my first treatment door to door was long but I was told to count on more like 2 hours afterwards. The first time they asked me a lot of questions, I met the dietician, the onco pharmacy had to check my pharmacy record for any possible contraindications even if I assured them that I am on no medication other than was has been prescribed for BC, etc.

As far as tummy sleeping, I was just given the green light by my PS last week, but... It's a bit like trying to sleep on small beachball props, lol. So I am in a semi sideways-semi-tummy position for the moment but have learned to enjoy sleeping on my back afterall. I am scared of popping my tissue expanders (don't ask) so my sleep is more restful that way. Maybe when I get the permanent implants it will be closer to normal but I'd say that Flap PS probably has the advantage to keep your breasts feeling more natural. At least a little perk for those who got this more difficult recovery procedure done!

Counting my blessings on day 3 - still that same little hiccupy queasiness if I don't eat often... But that's pretty much it. Fingers crossed still... I think I am going to risk going to work tomorrow, if I wake up the same...

Doing mostly walking to visit my sisters who live nearby (I cannot exercise for 10 days because of ovaries removal) and couch surfing this afternoon. I am grateful for living alonfe and not having to tend to a family - kudos to all the moms out here!!!

Mommacat4 - I think it's time you give the greatest life lesson to your 21-year old boy and teach him to do laundry - He should be the one doing laundry for you right now ;0)))

Enjoy the rest of the weekend, ladies!

Marjorie

P.s. For those stressed about the actual treatment - nothing much to stress about - to me it's more about getting ready to curb the most often cited SEs, so get shopping ahead of time and all will be fine!!!