Chemo in May 2014

Hi Kelly,

I am glad your port experience was good. I must admit I'm upset about that. I'm no wimp when it comes to pain and I'm not at all afraid of needles or surgery, it is just the thought of some foreign object stuck in my chest in a sensitive spot that creeps me out. I really hated the drains that were put in after my mastectomy and could not wait to get them out. Thank you for sharing your experience - it does help ease my mind.

God's blessings on you during your chemo, and I'll be anxious to hear how yours goes. I too notice the experience seems different for everyone. I'm really praying you and I (and everyone else in this May Group) fall in the "pretty easy" category!

I am getting Adriamycin, Cytoxan, and Paxitaxel (Taxol). What are you getting?

Regarding the port, mine was put in almost five weeks ago during the lumpectomy. It bothered me for the first week. For the next couple weeks it was only slightly uncomfortable if bumped or when sleeping on my side. Now I only notice it if I wear clothing that rubs it, then it itches. Avoid scratchy shirts or bras with seems that will touch your port.

My first chemo is tomorrow. I wasn't automactically given a script fot the port numbing cream, but I did ask for it. I'll post an update tomorrow.

Anyone trying anything special to avoid hair loss? My stylist recommeded Nioxin shampoo & conditioner for chemically treated hair. It can possibly prevent hair loss and at least promote faster regrowth. She then gave me two large bottles at no charge. If nothing else, cancer shows you how compassionate people can be.

I also read to help prevent hair loss, handle, wash, comb hair as little as possible, so to make this easier I got a really short haircut that I actually love!

I'm expecting it to fall out anyway, so I did checkout some scarf tying videos and love the scarf turban look. I doubt I'll ever go back to long hair again.

I am expecting the hair loss too, but I'll try the shampoo since it was a gift. I don't want to try the cold caps. They seem  really inconvenient.

Well, met with  MO, I will  be getting  4 cycles of Taxotere and Cytoxan. I will get my port on Monday, it is not optional.   MO, PS, Infectious disease MD and gen surgeon are unanimous due to the issues I have had with IV's, PICC line for IV antibiotic after staph infection with return to OR to power wash, replace TE and drain.   I will,start chemo 3-5 days after port is installed. 

Anyone who has gotten a port, will I feel up to working on Tuesday? Or, should I just plan to be off until 1st chemo, then the following 2 weeks a indicated by MO RN. There is concern re: my white cell count and the poss recurrence of the staph. 

I got my port when they did the lumpectomy, so obviously I couldn't go to work the next day, but I don't think the port itself would have made me feel bad enough to stay home, unless of course you have a very physical job.  The biggest thing to consider, I think, is having a comfortable bra to wear that doesn't rub against the port or the incision.  The port was freaky to get used to, and being occupied was a good thing because it took my mind off it.  It's five weeks later for me and the port seems to have settled into place and has a layer of fat over it.  Hardly noticeable.  I think I will love my port because I HATE IV's.

Hi Jason thanks for your response. OMGosh I know what you mean about the drains, the worst!!!! I had 3 and they stayed in for a full 2 weeks. No kidding they were worse for me than the double mastectomies as stupid as that sounds.

I was told that my port would be put on the opposite side of my cancer however I sleep on that side most of the time. When I got there I asked if it could be on the left side and they said as long as I wasnt having radiation, I said not that anyone has told me. So the right side it is. Ask for what side might be more comfortable for you. Mine is very small, the top part feels no bigger than a nickel and the whole thing when pushing down to cup the whole thing feels no bigger than a quarter. I hope it goes well for you and it becomes something that you don't realize it's there. Gods Blessings to you and your family too.

Kelly

Hey Lakegirl - I got my port in as a seperate operation.  It was sore for a couple of days - not bad sore but my shoulder kind of felt like someone had punched me there hard a few times.  I actually took one of my pain meds the day after the surgery.

Tverno - ask your MO about something called mugard for your mouth - see if they have a sample - will really help with the mouth sores 

Tverno,

Sorry to hear about your reaction. Hope all is well. Keep us posted.

 I'm in the chair getting TCH right now. 

Hi everyone! I'm from the April 2014 group but I wanted to pop in here and say hi and wish you all well!! 

I will be getting my 3rd infusion of Taxol tomorrow (weekly low dose for 12 weeks). I have found that taking my anti-nausea meds and some Tylenol the day after chemo helped avert the SEs I was getting hit hard with on days 3 and 4 but everyone is different, of course I was scared for my first chemo and asked if my friend who drove me could stay in the chemo room with me during treatment. Now that I know what to expect, I just bring my Kindle Fire and watch some TV or movies or listen to music on my ipod. The benedryl they give me during chemo makes me a little too loopy to read, though.My biggest problem during my first treatment was hoping I could make it
to the bathroom while rolling my chemo IV thingie with me without
tripping over it!! :P

Jason, you will be grateful for the port, trust me!! I too disliked the idea of it but going in every week for my "day before chemo" blood draw and then the day after for chemo-- my veins are thanking me now, I know!! It's just easier, and yes, much safer for the rest of your body. 

Ok, good luck all!!!

Hi JanetP,

I pray all your treatments go as well as the first one! Thanks for the encouragement on the port. It also helped that I met the oncology nurses the other day and they actually could show me the device and how it would look under my skin. They had this picture in a booklet of a person's chest with a rubber area on it with the port underneath, and another showing the actual device (exposed) and where the tube would go inside my body. It kind of set my mind at ease a bit when I saw how tiny the thing really is  - made it less intimidating somehow I guess. 

You are taking 12 weekly doses of Taxol? I wonder if I got that wrong with mine, I thought they were only giving me 8 weekly doses. They said my treatment was 4 months, with 4 bi-weekly doses of A/C, and 8 weekly of Taxol. I'd better double-check because I put in all on a calendar and was starting to get my heart set on that last week of August when I thought I'd be done. I'd be sad if I still had another month of treatments to go after that. But perhaps your regimen is just different than mine.

Jason, you sound like a scheduler like me. I'm a teacher so I am hoping to be finished in August too, but I've been cautioned that sometimes your schedule changes due to you blood count, so for me chemo may stretch into September.

My first chemo day went well except my husband looked so scared I sent him home, lol. My kindle was much more entertaining. Today was long, 4 1/2 hours, the next five will be only 2 1/2.

The cancer center I go to gives each patient a chemo bag filled with all kinds of donated goodies including a knitted cap, hand warmers, prayer shawl and a beautiful handmade quilt, plus necessities like chapstick, lotion, ect. So thoughtful!

The nurses also told me to expect massive hair loss in two weeks. They insisted I chose 2 free wigs and 2 turbans. I was't expecting that, thought I would have to buy everything. Everyone there was so nice. All in all, chemo day was relaxing. Fingers crossed for mild SE.

Hi Ladies and Gent!

I'll share my first week in hopes it alleviates some fears.  Definitely the wait preceding first infusion was worse than the actual experience. I am receiving dose dense ACT and had first AC last Thursday 5/1.  I had a lot of fatigue the first evening though that could have been result of an afternoon pain med taken to preempt any discomfort from cold caps.  Day 2 I had waves of nausea and minimal appetite but ate bland foods.  But got handle pretty easily with compazine and a bit of food in my stomach.  Bed quite early night 2

Since then, I've been operating at worst 90% of normal.  Some minor nuisances like runny nose in am and some sinus congestion.  But worked all week full time. Did notice exercise was a bit more difficult - faster heart rate, muscle fatigue. 

I've been careful to hydrate every day as well.  I am also taking Claritin daily to offset any potential pain from neulasta. 

My MO suggested we try to avoid port unless it became needed.  This was a surprise to me I have only one arm that can be used for IVs.  But #1 had no issues with IV during or afterwards.  

Feeling very good and optimistic for remaining treatments.  

We can all do this!  Best wishes for minimal side effects to all of you. 

Thank you Kazzy! That's great news and I hope we all do as well as you are!