Chemo and port questions

[Heart Sutra]

Thank you all for being here.

After typing this out once, the system burped and deleted it...I think...so if there are two of these posts that would be why.

Sue is to start rounds of AC after the holidays. She is also to have a port placed because her veins are little and they roll away from needles (scaredy veins). Afterwards, she's to start with Taxol ( or a form thereof) and Herceptin. She's also to go to a genetic counseling appointment to test for "the cancer gene" which some of you have also done. This test's outcome doesn't seem to affect treatment directly, though it opens the door for choosing preventative measures.

As our best resource for personal experiences, we're asking you what you've discovered, and what we can expect from AC, TH, the port, genetic counseling... is that enough? ;). There is a qualitative difference between hearing someone's personal experience and hearing the standard list of "...possible side-effects", This is the greatest strength of this board (combined of course with the overflow of compassion -that is priceless).

The medical-go-round is very draining. We can't thank you enough for all of your support.

For Kate--- We finally have enough information to add to our signature. We'll get to adding it soon. :)

---Kevin and Sue---

[Barbara H.]

Believe it or not, she will get through all of this. I have those small rolling veins and the port is necessary.
Good luck,
Barbara H.

[saleboat]

Hi Kevin and Sue,

The one thing I can promise, is that if you're like me, once you're done with chemo, you'll barely remember it. You really will look back on it in the past tense, and really have to think when someone posts on these boards and asks you to share their experience.

Because the pre-meds and anti-nausea are so good, it is unlikely you will have a lot of trouble with nausea. I had a little here and there, but the drugs keep track of it really quickly. After the first chemo, I woke up feeling like I had heavy blankets on me and like I had a really bad hangover (I've definetly had worse :) That feeling didn't stay around for long, and once I got past the first three days, I felt pretty much like myself. I also used Ativan to sleep, which really helped calm the nerves, plus it is an anti-nausea.

A friend who had had treatment for Hodgkin's 10 years ago, and who now works as an acupuncturist with a lot of cancer patients, gave me the following advice: WATER and WALKING. After each chemo, I left the cancer center and did a loop around the resevoir in Central Park. And drank a ton of water. The chemo does its job very quickly, and after that, I wanted it OUT. It is also important to keep moving because you want to keep your body in working condition-- if you curtail your activities you're going to create other problems-- potty problems, muscle atrophy, etc. I definetly got out of shape during treatment, but I could still walk, so I did whenever I could.

Remember-- you're not sick!!!!!!!! Your health is being threatened by a cancer, but don't think of yourself as a sick person. A counselor at the cancer center told me that, and it really changed the way that I thought about this whole experience.

The truth is, that each individual's toleration of chemo is about as unique as the cancer that they're fighting. Some don't miss a beat (like a fellow patient who ran 6 miles a day), and some really have problems with it. Both of these cases are rare. Most of us limp through it, a little worse for the wear, but not at all broken.

I hope this helps. Keep your eyes on the horizon-- the healthy future ahead of you.

Jen

[KellyA]

Hi there. I went for genetic counseling. It was very easy. I decided to have the bloodwork done and it took about 3 weeks to get an answer. I was negative. My insurance denied payment on the first ask, but paid in fulll on the second.

The prot was also very easy. I was very nervous. Needles don't usually bother me, but this did. I chose to have a "passport" instead of the standard prot in your chest. It is located on the upper inside of my arm and is not visible. My friend who went through chemo 2 years ago told me about it- I wouldn't have known to ask and my doc didn't offer it as an option. He was more than happy to let me have it when I brought it up. It has worked great. I didn't feel much at all when they put it in and it really wasn't bad. I got nervous for nothing.

AC came next. I lost my hair on day 14 (after the first tx). I had very long hair, so I shaved my head before it started to go. Actually I let my 3 boys give me a mohawk and my hubby carved the NY Yankees logo in the back of my head. I figured that I might as well have fun with it. The first AC really surprised me. I kept waiting for the bomb to drop and it never really did. I started my nausea meds the SECOND I got home and kept taking them for 4 days until I thought I was safe. The meds made me very tired, but I was ok otherwise. (CONTINUED)

Kelly

[newgg]

Don't you just hate computer "burps"....guess it is the best way for the "gas to pass". As for info about all that other stuff, you will find that we all do it different....some easier...some worse.... but remember that it is doable !! You are so right this is the place to be so pick these brains often. Wish I had found it sooner. The onc RN who handles the infusions is also a great source.

Port....wonderful thing even if you have big, huge veins. Think of the port as saving them for when you really need them.

Wig...if you want one get it now so you can match your current hair style and have it ready. Many of us cut our hair very short just to make that entire process easier.

Take the premeds as directed and most of us were never as sick as we thought we would be. Thanks be to chemicals!!

AC......cumalative effects...means that each dose ( doing the dense dose?) takes a bit more out of you. So the 4th will be the worse...just remember...doable!! If you find after the first time or two that you do not need as much pre med (dang those steroids ) work with your onc to adjust. Personally found the taxol/ taxatere easier than AC.

Am sure that some one has already told you to keep copies of everything !!! Have to repeat....keep copies !!

You know ....just previewed this and made it shorter.....I know hard to believe. It all may be info over load right now. Just be sure that you have found the fountain of info here. As you both go into the journey ....all the experts are right here. The Been there Done that Team Extreme will go into over time....just ask !
Hugs, Bonnie

[KellyA]

The chemo is cumulative, so I felt a little worse with each one. # 3 was the worst. Don't know why. Was not sick, just a little nauseated and very tired. AC to me was the worst.

I had 12 weekly Taxols with Herceptin. That wasn't bad at all until I got to the end and was VERY tired and a little achey. My hair actually started to come in thick during the Taxol, but I lost my eyebrows.

The biggest thing that I would say is take your meds BEFORE you are sick. That will head it off. It is very hard to get things under control once you are sick. The whole experience was not nearly as hard as I thought it would be. Drink lots of water, and oh yea- start with an over the counter stool softener and take it every day. The meds cause horrible constipation- my doc was insistent about me taking a softener.

All in all, things went very well. I went to the pool with my boys, was able to work through it- I just needed a little help around the house because I was so tired. Meals came regularly and that was huge.

It will be ok- you will surprise yourself with just how strong you are!

Love, Kelly

[newgg]

Just had to add......water, water and more water. And if walk every day....keep it up !
Hugs again, Bonnie

[LAURIE]

Diagonsed in August. I am here to tell you the time goes fast. I too got my port, bone scan, CT scan, mugaScan and then started 4 rounds of A/C. Are you going to have 3 weeks (or 2 weeks) between A/C treatments? I had surgery on 11/30 (lumpectomy and node removal) and just started 12 weeks of Taxol and herceptin yesterday. I am early in this game too but rememebr it all very well.

"sometimes you can't make it on your own" U2

My best advice it to watch funny shows on T.V., take the help others want to give you (even if just makes them feel better) and if your not working during the treatment think about the days you feel great as extra vacation days. Even through all of this I have had some great vacation days.

Laurie
Diagonsed 8/06 (found oun lump)at 35 years old
Her 2 +++, er-/pr-
4 A/C 9/06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
Start 12 weeks Taxol and Heceptin 12/18/06

[LAURIE]

One thing that has made hair loss easier for me. I have about 5 wigs, I wear them very little, I love to wear hats with bangs. My own bangs. When my hair started to fall out I cut it into 8 litttle ponytails and kept them. I put one of those ponytails on a strip of tape about 6 inches long. I then spread the hair over the tape thinnly(but not thin) kind of like bang a side swept bangs are. Then cut them, rememer to keep the sides longer so you can tuck them in your hat or behind your ears. (For some reason covering my ears was important and having a hat fit down on the base of my neck was important for me.) I then put another piece of tape over top and took it to the sewing machine with a close stitch. I love my real but fake bangs. Everyone tells me I should start my my own pre chemo bang business. I usually wear a ear band and place the bangs under that then put a hat over top the ear band. The ear band makes you hat fit better and hold the bangs in place. I bought a manafactured bang think, but it looked to unreal to me. I will try to post a picture with my name soon. You and I are lucky we are going through chemo when wearing a warm hat is socially accecptable and necessary. Well I gues I'm thinking about Ohio weather, not sure wear you are.

Laurie
Diagonsed 8/06 (found oun lump)at 35 years old
Her 2 +++, er-/pr-
4 A/C 9/06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
Start 12 weeks Taxol/...

[Margerie]

I didn't get a port and managed my DD A/C and 12 taxol/herceptin. Even made it up until the second to last herceptin-only treatment without one fine. My onc and I decided on one more year of Herceptin- so I just got a P.A.S. port like Kelly did. I did not want another scar on my chest- but I am really vain. I like this little port already.

Anyway, the chemo days were not as bad as I expected. I really did well taking Emend for nausea during A/C. Finding something that tasted good enough to drink was a challenge for me. I ended up with lots of tangerines and ice cold mineral water. Have a few things to try! The taxol was very dehydrating and you usually take decadron (steroid) with it. So I needed nose saline and vaseline to coat my nostrils. Stool softeners (bought the Costco size-LOL) were my friend. I also needed a sleep aid- as that decadron really wires you up.

I was quite surprised to be a fully functioning human- albeit a tired and hairless one!

Good luck!

[CPA]

Quick note about nausea. If they only give you compazine and you are still miserable, ask for zofran. Jill found it much better. Zofran is $$$$ so make sure insurance covers.

From what I have heard in talking and reading these posts, some experience severe nausea, some moderate and some just a little - even on similar chemos. Good luck

[tousled1]

To answer your questions:

port - a msut have! I had mine put in and then went immediately for my first round of A/C. Did develop port related clots about 6 weeks after it was put it. Had to give myself shots in the stomach for a week then went on coumidin. Stayed on that until a week before surgery and have had no problems since.

A/C - you will definitely loose your hair. Mine started to fall out in clumps after about a week and a half. Had my daughter cut my hair as close to my scalp as possible. The rest of it fell out by day 16. I had a wig but only wore it twice. For some rason loosing my hair never bothered me. I wore hats (news boy style) when I went out and other than that just went ala natural. I was given EMEND the day of and then the next 2 days. Never got sick. I did get extremely tired.

I did not have Taxol/Herceptin but had Taxatere. With the taxatere I experienced a lot of neuropathy and bone pain. I had a lumbar spinal fusion in Dec 2004 so that contributed a lot to the bone pain. I am now getting Herceptin only every 3 weeks. One thing I hated about the Taxatere was the premeds (Decadron). It would wire me up for days and then all of a sudden, I guess when the steroids got out of my system, I would crash.

Like someone said earlier, chemo becomes a slight memory. It's hard for me to remember exactly what I experienced, but I know that I got through it and you will too!

[Dace]

I have scaredy veins too. When I did ac/and taxol, I had a picc line and it was great except that I had to get it cleaned and flushed every Friday. I did my chemo on a Friday and Usually felt okay over the weekend. I was guaranteed to throw up on Monday morning (probably because i had to get up and go to work) I did work through chemo and did a great deal of walking as I take the train to work. I guess I tolorated it pretty well (I was 33) I took everyone's experiences and planned for worst case and I didn't get that. Everyone is different and so will the reactions. I now have a port and I think it's the greatest thing they do my blood draws, and injections for scans through it. And I gey one stick and they are going to get it on the first try!

[rinaina]

Good you are getting a port, my veins are bad too and it was the best move especially if you have herceptin coming up for a year. I did get worse with each AC treatment but nausea was not the problem...meds for nausea worked like a charm for me so just follow your onc's prescriptions for the meds for nausea. I had other problems such as fevers, mouth sores, eye problems, extreme fatigue and rashes that no doctor could explain. Most do just fine but even me who had problems on chemo....it is now a blur and I made it through and I am fine now and tolerating herceptin great. You will be okay. Take all the help you can get because you will be exhausted most likely.

[jener8er]

Great advice from everyone here - just want to add 2 things that my onc nurse told me before my very first treatment:

#1: Although you will feel like you're spending all your time in your docs office, go in, get your treatments, then GO OUT AND LIVE YOUR LIFE.

#2: Learn how to say THANK YOU for the help that people offer. This was HUGE for me as I hate asking for help and have no family nearby. I had to rely on friends and learning to say thank you was one of the hardest things to do.

Other than that, you'll both be fine. And as Jen said, a couple of years from now, you'll go "did I REALLY do all that surgery/chemo/radiation/more surgery". It will become a distant memory, kinda like childbirth :)
Good luck,
Jen

[Heart Sutra]

Thank you all so much. As always, the best source... with humor too!We really do admire everyone's spirit and honesty, you are all so helpful.

Thank you for being here

[Bev]

Port: With small and rolly, the nurses will prefer a port. They do light sedation. I woke up and asked if I could move my neck. They gave me more meds so I'd quit talking. The arm port sounds interesting. It sounds like it would be less visible during the summer months but I don't know if there are functional issues.

AC. Did Emend with no nauseua. You feel out of it and sleep lot's. Had metal flavored burps. As your concerns crop up, ask. Low WBC and RBC are likely to be issues. Tried nuelasta 1x. Cure was worse than the disease for me. Felt like I was being stretched. Onc only had me do it once. As time passed onc said your counts will go back up w/o the extra drugs. Overall I was able to function in a light duty way. Even had enjoyable times. Even laughed a lot. My side effects are loathing of food I ate while on AC, ie cranberry juice and frozen baked potatoes.

The hair thing, now is a good time to work on it. Very clever Laurie using your own hair. I had a love/hate with my wigs. My "wig" looked better than ever but had worries that it looked fake. I think it would be best to have it short while it's falling out. I guess you have to come up with your philosophy about bald, scarf, hat or wig.As I have always had long hair and chill easily, the hair loss bothered me. My hair is now full and curly, better than it has ever been in my life. But now I look at it and think it's not me. I'm still adjusting. I think eventually I'll lean to love it.

Won't even get to TH. Too far away. Do check the search bar at top of page. I'm betting Sue will sail thru most of this. BB