October 2013 Chemotherapy

I had my first Neulasta shot today and aside from a little bit of an icky feeling throughout the day, so far so good. Question-I have been taking the Zofran every 8 hrs, even though I do not have nausea, just a little icky feeling. When I saw my MO today I asked when I should stop taking the Zofran and he said, "Today. If you're not nauseous, don't take it because it does have side effects and you don't want to build up a tolerance." My feeling is that I want to stay ahead of the nausea before it comes, and if I do build up a tolerance there are plenty of other anti-nausea drugs I can take. Any thoughts?

relocated- I did have significant port pain, but have since been told by 2 Docs & 3 nurses it is because I'm petite (I weigh less than 100lbs) and I don't have the cushioning lol. I alternated between leftover BMX vicodin and tylenol, but it was not worse that the BMX pain. I had it accessed for the first time yesterday and it was pretty easy. I know it just seems like one more bit of torture, but you will get through it.

Wrenn-I think the triple neg. makes things a little scarier for us, but I agree with 'relocated' that many people don't find their tumors til they are huge and the chemo still works. Hang in there, I think we all know the waiting is the worst!

Checking in -- looks like the Wednesday gals did fine, and I did as well. Since my infusion was at 3:00, I went to work today. Had my usual mocha but ate starbucks classic oatmeal with it (yummy). Had a light lunch which included mashed potatoes and salad, but skipped the desert on the buffet. Pushed the water all day.

I don't have a port, but no burning or discomfort with the IV in my arm -- hurt more when they put in the contrast dye by IV when I had my MRIs. During infusion chewed on Popsicles and drank a smoothie made with Bigelow ginger with lemon probiotic iced tea and a bit of honey. Ate some almonds and some trail mix during infusion. So far feeling pretty normal. Had a little bit of mild stinging in my sinuses (RN said from Cytoxan), but that's it...

Ate a cup-o-noodles, some dried apricots, some yogurt and some pretzels. Feeling hungry every couple of hours, so snacking on granola bars and cheese. And keeping up LOTS of water. Thus far feeling a bit tired, but no other SEs. Knock on wood....

What to do about my hair? I have long hair and want to save it and I want to go as long as possible before cutting it off. I have an appointment for hair cut after next chemo session, at day 15, can I wait that long?

Yesterday was a lost day. Side effects hit hard from 2nd infusion Tuesday. Complete total fatigue, could not stay awake or even move, plus all over achiness. Hoping today won't be as severe.

How are you Wednesday gals doing?

Vivian, welcome to Oct Chemo. I remember reading about your journey on other threads -- you have been through a lot. Once you get your tx plan from the MO, I think it gets a little easier in a way... At least you know what is in store and there are not Dx-related issues blindsiding you every other day. In other ways, though, this has been a hard part for me because I so want to have control of my life back, and I have more control, but not completely. As with surgery, these boards help to reduce that fear of the unknown.

Some people have used Brian Joseph, but rather than keeping you from losing them, it may just be helping them to grow back more quickly. I did not lose my brows during chemo, they just thinned. I lost all my bottom lashes and most of the top ones, and my lashes did not cycle - I just lost them the one time. Some have also used Latisse to help the lashes grow back after chemo.

They definitely come back - don't worry! Sometimes they come back thinner or more sparse though. Sometimes they "cycle" because lashes and brows naturally don't all fall out at the same time. What some have experienced is lashes falling out more than once before they get back into a natural rhythm of loss and regeneration. This did not happen to me though - the bottom lashes came back first, very nicely and evenly. Tops never completely fell out, and came back in more sporadically, but once they were back they all stayed. My lashes are pretty much as they were pre-chemo, possibly each lash is a bit finer but mascara fixes that, no problem.

Special K - I had Neulasta (I was the one with reaction) and my bloodwork post #1 for WBCs was 1.1 (lower end of normal range is 4)....from your experience is that really low or have you had lower? I am worried about MO not giving me the injection and how they will fare

lgkgde - that is definitely below normal, and low. I am assuming that they are declining to give you more Neulasta because you had a reaction. Have they discussed either trying Neupogen, or putting you on a prophy antibiotic? I had Neulasta throughout chemo so I did not personally go that low.

aw sorry hou're having a hard time with the nausea Pam. I hope that clears up because it can't be easy having to travel back for the IV meds when you feel like that. Glad everyonemelse is doing ok and welcome Sue and Vivian. You've come to the right place.

My home care nurse said my sinus is closing up but can't close fully in just 3 weeks. I hope it is good enough for chemo to start and that it doesn't take a hit in the healing duemto chemo.

Good morning,

It looks like October is the month, tentative chemo start date is 10/25. Incision must be fully healed and no signs of bacteria, if not we go to 11/1. A lot of blood test were done in her office. I have to have a MUGA scan (hosp calls to set up) and I go to Chemo class on the 18th. Port going in 10/23.

We discussed many things, she wants all test back before I know exact recommended regimen. We discussed 2. AC-TH and TCH. Both can be dose dense or more spaced out. That pesky micromet to my Lymph node is the concern and may be the deciding factor along with scan results to lean towards AC-TH. I see her again on 10/24 so I should know by then if not sooner. No rads recommended for 1 node and with BMX all margins were clear. My bc was closer to skin and my BS removed an area of skin along the top of it, so I have an extra scar, final pathology showed margin close to skin, but skin was clear.

Didn't know enough about either regimen to argue for or against either one if it had been an option or my choice. I know Herceptin is a must and is for a full year. I have read H has possible heart effects as well as the A. ???

Love to hear your input on these regimens. I shall also be tring to educate myself.

Have a Blessed weekend,

Vivian

Hello

This is my first post but have been reading posts for a while and find them very encouraging and very informative. Thank you all for the great posts !. I started my TC chemo yesterday 4 sessions over 12 weeks. So far so good just face is very red and warm today when I woke up but other than that feel good. My doctors and I agreed to have the chemo due to my high onco score and my age of 45 thought is would be on the safe side to do the extra step. Will be having 27 radiation sessions after chemo . Life have been a journey of ups and downs over the last 4 months but the outcome is very good like I have said early I have the posts very informative for me on this web site and it helps me greatly. I will be having my Neulasta injection tomorrow and I am going to try to Claritin before and during the next few days to see how that goes. Not looking forward to hair falling out but have decided once it starts to shave it off so that will be a big deal for me but I do have lots of nice hats to wear for the fall/winter weather. Thank you all for the updates!

Hello Marchmay, I will start TC next week. Same regimen as yours. I always feel so much relieved when I come where I don't have to explain one single word. Hope we can share this journey together and keep up our spirits! Hope our SEs are manageable! Warmly, Jen

jenSF and MarchMay, welcome! I have the same Tc regimen, and started on Thursday. In case it is of help to you, I will share my experience -- but know that we are all different, and I had read everything, like you, before beginning. I was nervous, and took an Adivan before leaving for the infusion.

The actual infusion Thursday afternoon was easy - like an IV, and I have had plenty of those in my life. I don't have a port -- apparently I have "good veins" so it is not needed. No tastes or sensations from any of the drugs at all. About three hours and I went home. Felt fine and normal.

So far (I am nearing 48 hours from infusion) SEs are not too bad. The initial PreMeds they gave in the infusion are starting to wear off, and today I am feeling the fatigue. As for advice --- I have a ways to go til I can say I am done with this first of four treatments, but so far it seems like icing the finger tips during infusion worked (no neuropathy), drinking LOTS of water before, during and after has helped keep the plumbing moving, eating Popsicles and drinking smoothies during infusion kept mouth sores at bay, gentle exercise -- a walk each day -- helps digestion and outlook, and I have not yet felt a moment of nausea so the meds are doing the trick there.

I do have a persistent mild headache, had some stinging in my sinuses shortly after infusion (RN said Cytoxan causes that), had double vision for a few hours following infusion -- my research shows that could be due to Taxotere! and I have some constipation and some gas pains, but not too bad. I am a little cranky, but trying to be nice to DH, who wants to help.

So know this: This is doable, and it is no where near as bad as I had imagined.

Hello one and all,

My 1st post You are all like a warm hug ( or a hot toddy! ) as I read through the post ;I laugh and cry. I am both sad and glad to be part of this community. I had my first chemo Oct. 7th. and sat for 5 hours with my mother. It was not too bad other than one of the patients next to me in the infusion center had an episode and I broke down crying. He was taken care of immediately but scared me to death. Not something to see on your first infusion! Ye Gads.

I worked all week but extremely tired every night. I have been hiting the hay by 9PM as I cannot keep my eyes open. The steroids were affecting my sleep pattern up every 2-3 hrs. I have some nausea, not too bad though trying to keep this under control. I am taking Zofran for this and I think I need to take more often as to not let the nausea get ahead of me. I am scared of all the SE of all these meds and toxins! I did take Claritin day of neulasta shot up to two days after. The neulasta turned my face on fire for a few hours the next day. Having issues with constipation as well. I am hoping for a better nights sleep this week. I am finding food is already losing some appeal. I had rice,broccoli, cheese casserole for dinner tonight this stayed down .

I have to go to a ENT dr. this week for a larnoscopy Friday as soft tissues thickening showed up on tongue and throat on my PET scan . MO wants this checked.

Gosh I wish this was all over with already. Thanks for all the love and support here and chin up !

Furfriend