TCHP Ladies Late 2014 / Early 2015

PMR53

Raleighgirl- I am so happy to be done with Herceptin too. Last dose was first week of December. They wanted me to wait and get port out when I have exchange in April. Are you getting yours out in Drs office? I think I want it out before my trip to Maui in March. How are you feeling as far as aches and pains? 🎉🎉🎉🎉

Patty 

april25

raleighgirl-- How was it getting your port out? I'm scheduled to get mine out in a couple of weeks... Hooray!!! It's served me well, but it will be nice to have it out!!! Congrats on getting your last infusion! (Hmmm... I was only getting Herceptin, no Perjeta since my chemo was stopped. These differences in tx always puzzle me!)

raleighgirl

patty and April25,

I was surprised that I got no sedation at all for the port removal! Just some shots of lidocaine around the port to numb it first. The interventional radiologist did it in the hospital. It was strange to be awake for it but I didn't feel anything. It is healing up so nicely and it is wonderful not having to worry about my 1.5 and 2.5 year olds bumping into it!

I just feel like even though I have exchange surgery in March it was worth if for me to go ahead and remove it. I am so happy with my decision

PMR53

Raleigh- I went ahead and made an appt to get it taken out! They can't get me in until Feb 11th though. My exchange isn't until April. I wanted it out sooner but I guess that's the soonest. How long did you have to wear a pressure dressing on it?

Patty

raleighgirl

Patty,

That's great! And congrats to you and April for finishing up the infusions as well! I remember when I was diagnosed a year ago the doctor toldme that in a year and change I would be through with therapy. Then, it seems like an eternity. I can't believe that a year has passed and this part of the journey is coming to an end.

I am still wearing a small piece of gauze with a bandaid over it. They told me to do this for 8-10 days. The glue has already come off in the shower and the incision looks great.

april25

raleighgirl -- thanks for the info on your experience! I think I only had local anesthesia when I got my port placed... I know I was talking to the everyone all through it! No pain at all. So I guess they might do the same for the removal. I wouldn't mind more of a twilight than the placement, though. I was SO awake that I was squirming around due to things starting to itch in odd places (like my nose-- a strand of hair was tickling it), which made everyone freak out and have to re-tape all those papers down! I'm sure if I was more sedated I wouldn't have been lying there feeling every little tickle!

The year does seem to fly by when looking back, doesn't it? Of course, while I was going through chemo, wow, did time seem to DRAG!!! I was so glad that was over that Radiation almost was a happy time for me!

PMR53 -- Sorry they can't schedule you until February. I was originally scheduled for Jan. 20, but had to change it to the 26... BUT good thing is that they told me I didn't need to flush it for 6 weeks, so I won't have to do that again while I'm waiting! Mine hasn't been too much of a bother, but I'll be glad to have it out. It does bump into things (mostly the seatbelt while driving), and it does give a weird pinch in the neck now and then, but I've largely kind of loved having it there for all the infusions and blood tests and when I had to have IVs...

I hope you both have smooth and easy exchanges!

GentleBird

Thanks so much SugarCakes for your post. I was just diagnosed with IDC on 1/11/16. I'm PR & ER negative HER2+. I will have my port installed this Friday and will begin the TCHP treatment the following Friday (2/12/16). I'm still in shock about my diagnosis and worried about how I'm going to feel during the initial treatment and subsequent treatments. Reading all the posts are helping to calm my fears. Once I've finished the 6 treatments (some time in June), I will have a mastectomy. (I have two areas in left breast and found out yesterday from MRI the area extends to my nipple so my doctor does not recommend a lumpectomy. I'm also having genetic testing middle of Feb so depending on results, may have a double mastectomy.

CassieCat

GentleBird, good luck to you. It is not an easy journey, but it one that you will get through. {hugs}

loriekg

Hi GentleBird…how did it go today? I am about one year ahead of you and can CLEARLY remember that numb "in shock" feeling those first few days. I know I've forgotten a lot of the side effects until someone else brings something up and I'll think, "ohhh yeah…the heartburn" but I will never forget those days right after diagnosis. I know everyone is different, but for me, I would plan on being "down" for about 3 or 4 days after my neulasta shot, then I would be able to continue my regular routine. It's hard…but you can do it!

GentleBird

Hi loriekg -- I had my port surgery on Friday. All in all, the surgery for the power port was not a bad experience. I was pretty sore up until today and took aleve to deal with the pain. Nothing needed for today. I'm itching -- so I hope it's due to healing and not being allergic to the wire or port. The position of the port is right along where my bra strap would be. So, I'm just wearing a cuddle duds top. Since the port area is still sore -- I can't image what it is going to feel like this coming Friday when they access my port for chemo. It is all the unknown for me that is scary. I can't seem to get enough of reading everyone's comments to help calm my fears. Thanks for sharing about the neulasta. My MO has recommended I take Claritin before, the day of and the day after to help deal with some of the discomfort. I am still shaking my head about all of this and I want this Friday to come quickly so I know what I'm dealing with as I start this journey. Thanks again for your support. Thanks too to CassieCat for the positive thoughts and hugs!!

Italychick

just a note about Claritin, take it longer than three days. I took it 4-5 days after neulasta and never got any bone pain. As for accessing the port, they can spray stuff on it to numb the area before accessing. My port area was sore, but the actual access of it was uneventful. The pain goes away after a few weeks. Now I don't even know it's there, I've had mine a year, can't believe it has been that long! Don't be afraid of it, the thing is tough. Mine has been beat on by little kids, and they even squished it for my follow up mammogram. The mammogram technician said they are really tough. I think it has little or no metal because they can do an MRI while it is in

raleighgirl

gentlebird,

Just wanted to send good thoughts for you. You will get through this!

Regarding the port, I got a prescription for lidocaine which is applied one hour before the port access for chemo. I would put a quarter size amount of lidocaine on the port and little piece of Saran Wrap on top of it. I never felt a thing when they put the needle in. Really, the port was so wonderful during chemo

loriekg

Hey GentleBird! Glad to hear you are doing well after your port placement! Like raleighgirl said, ask your MO to write an Rx for lidocaine cream. It worked great and I never had any pain when the port was accessed! The first time I used it, I didn't know to put saran wrap over it, so make sure you do that so your clothes won't rub it off. (I just cut up a sandwich bag and taped it on with medical tape.)

You said you've been reading these boards, so maybe you've already read that you can "ice" your fingers during the taxotere infusions. (They give you one drug infusion at a time.) You may want to take a couple of bags of frozen peas, keep them in your center's freezer, then just dig your fingers into the bag when it's time.

GentleBird

Italychick -- thanks for the info on the Claritin. I will be sure to take it for 4 to 5 days.

Raleighgirl -- I will definitely ask for a scrip for the lidocaine and will use the saran wrap. While I'm not afraid of shots or needles, I have to admit that the port needle makes me more than a little nervous -- again -- it's the unknown for me right now. Thanks too for the positive hugs.

Loriekg -- I do not know about ice for my fingers. I'm guessing that the taxotere infusion is going to hurt my fingers? My MO told me I will be there for 5-1/2 hours on Friday -- that the infusion for herceptin will take 90 minutes for the first time and the perjeta infusion will take an hour as well as an hour each for the taxotere and carboplatin infusions. Do they give the meds in the TCHP order? Are there any other helpful things I should do in addition to the frozen peas? They told me to drink 2 liters of water 24 hours before and 48 hours after each treatment. Also told me to start rinsing my mouth out now with baking soda, salt & water. Any suggestions/helpful hints would be much appreciated.

loriekg

Hi GentleBird! The icing is because taxotere can cause peripheral neuropathy (nerve damage that can result in loss of feeling in your fingers and toes, or burning, tingling.) AND you could experience damage to your nails, like changing color or lifting off. (I ordered the nail strengthener OPI Nail Envy from Amazon based on recommendations I read here.) I thought I dodged the bullet and came out with my nails intact, but there was some weird lifting that I had after I was finished with TCHP. And I had a little tingling in my fingers sometimes (felt like they were just fixing to go to sleep) but that's gone. When I was in the chemo chair, I would see some ladies with their fingers in ice water. (Even toes too!) It just seemed easier to take the bags of frozen peas. And no, I didn't do my toes.

Another thing the MO told me to do to prevent neuropathy…take L-Glutamine 15 grams twice a day, starting on the day of chemo and continuing for 7 days. I purchased this at GNC.

(Note: I've read that the carboplatin can also cause neuropathy, but my MO just said it was only necessary to ice during taxotere.)

Yes, they do give the TCHP in order, but I can't remember what order! I always read here how important it was to stay hydrated, so drink all you can. After your treatment, things will not taste the same, even water! When I say "not the same"--I mean disgusting! I can't even describe how weird it was. It would take me about 4 days to a week for things to taste good again.

You may have read here about Biotene toothpaste and mouthwash. Your mouth may be very sensitive (my normal toothpaste would really burn) so you may want to get some of that toothpaste. --Lorie

CassieCat

I want to echo the advice to stay very hydrated. Drink as much as you can! I didn't ice during treatments. I did experience some lifting in my nails. If I had it to do over again I would have iced. I also used a very soft toothbrush and rinsed with Biotene. The order of my infusions wasn't always the same. I thin the first time they did the T and C before the H or P. And they did things slower, to watch for reactions. I never had any reactions, and they were able to do some of the infusions a little bit faster during future visits. I had Neulasta shots and despite Claritin and Tylenol, I had a lot of bone pain the first few rounds. I think I was fairly unlucky in that respect. However, it got better by the last round or two. The not knowing during the first round was very hard for me and caused a lot of anxiety. I kept a daily journal of my side effects and any meds that I took, in an effort to better predict how future rounds might go and do things to head of some of the SEs. It helped, in some ways.

MinusTwo

GentleBird: I found this thread very useful - tips for chemo. Good luck.

https://community.breastcancer.org/forum/69/topics...

raleighgirl

hey ladies!

I finished tchp December 29. I still continue to have mouth sores(usually at least three at any time). I have tried the magic mouthwash, the paste, canker covers, etc. I was given doxycycline for acne three weeks ago(obviously this stems from treatment as well) and miraculously the mouth soresdisappeared. I developed esophagitis this week as a side effect of the doxy and had to discontinue it on Monday. Guess what happened? I developed two mouth sores last night!

Have any of you other ladies had his ongoing problem with mouth sores? If so, did you manage to solve the problem? It's such an annoyance.

IndyGal35

I had a raw throat after my first two chemo infusions, but I didn't have mouth sores. Someone recommended that I take Lysine, so I took that daily and didn't have any more issues. Hope that helps

raleighgirl

thanks indygal! I'll definitely try that