June 2007 Chemo

Hey, ladies!  I've been absent for awhile, well, a long while! 
My family had a surprise end of chemo party for me Saturday night and I had relatives here for days.  Had a wonderful time! Fun but tiring too. 

Medical updates:  Met with my oncologist on Thursday and I've decided I need a new one.  He's so set in his way and I'm the sort of patient who needs to have input in my treatment....so..I have a second opinion with another onc on 11/14 for my hormonal treatment.  Wish me luck that this one clicks.  I know, seems odd to change after finishing chemo but I rarely saw him during my infusions, dealt mainly with his nurses and PA and I loved them.   Him, not so much.   :-/  

Had my first mammos yesterday since my surgery.   I was not a happy camper, first time ever (in 14 years of getting mammos) that I actually had tears in my eyes from the pressure.   But, remember, I still have that open wound so I'm sure that didn't help.  And, the port in the left breast kept making the whole screen black so she had to keep repositioning me to get a better picture...sheesh!!   I was glad to be done with that.   But, got the all clear until 6 months.

Had a follow up with the surgeon's NP after the mammos and she is suggesting genetic counseling...which I wanted since my family has several cases of bc and I have a 21 daughter.   Go for the genetic counseling on the 14th too...if my husband can go, might have to change that date.  

Let's see, I see the rad onc tomorrow for my follow up with him.  I don't even think he knew I had an infection after the mammosite so will have a lot of catching up with him.  I do expect an all clear from him too though.

My calendar looks like a medical convention!  

My husband and I are leaving for vacation on Thursday, the 1st.  We both need a break!  After we return I'm right back with the doctor appts...does it ever end?!

Oh, the BEST news, I had my port removed today!!! I was so excited they could squeeze me in before we left.   I'm sore tonight but nothing too bad.  

Good luck to those starting rads soon. 

As for hair, mine is growing pretty fast now!  Unfortunately, it's definitely a white/gray color but it's definitely there, like a fuzz all over my head. 

GarnetAnn, I had volunteer hair too....they're really long now!  LOL  I love that expression, perfect description. 

Hope everyone is doing well and Happy Halloween!

Hello my Junies,

Hope you are all well. I just wanted to share with you........ the absolute beautiful experience I had last night in the midst of this beast we call cancer. I was present at the birth of my great niece! This was a very meaningful moment for me because the day I was dx, my niece called to tell me that she was indeed pregnant. She had a bit of a time with delivery, but was a real trooper...... little Mackayla had a collapsed lung and was taken to the special care unit, but is doing much better today and will be home by the weekend! I was so moved that she allowed me to be there, along with her hubby and parents. It just gives me such hope for the future!

Thanks for letting me share!

That's great news Bonnie! It's nice to be reminded what we are fighting for--life and our families.



Sorry I missed all the hoopla. My daughter's computer had coffee spilled on it, but it's back and so am I. I made friends with a woman who had recurrence in her lungs. (I told you all about her several posts back) She is er+ and her2- and Taxol has shrunk her lung tumors very succesfully. Taxol has saved her life, basically, so I don't feel bad about taking those Taxol treatments despite that study. It's possible they are helping me and I'll take all the help I can get.

I've started rads this week and no problems yet, though the SEs usually take a couple of weeks to show up so we'll see. My rad onc wants to xray 2 times a week. Is anyone else doing that? It seems excessive.



I have white fuzz, so it's good to hear that color may come in later. My volunteer hairs (thanks for the term Garnetann!) are red so I still look a little funny, but that's OK.



I'm using 5,000 mg. of biotin for hairgrowth and it's working well. I waited until 2 weeks after the last Taxol and within 2 days of starting to use it, I had hair. For protection I'm taking E, D, B6, COQ10, Calcium, Zinc and a multi-v every day. I eat 14 of those small carrot sticks every day for my A. I take lots of C--at least 6,000. My doc says it's water soluble and won't build up. Linus Paulding did a lot of research on C in the seventies and it's supposed to be a great cancer killer. Some people recomend 10,000 to 20,000 mg.



Ask your docs what they think. My onc doesn't believe in vitamins, but he said they were OK as long as I didn't take them the day of treatment, the day before or the day after. Before cancer I did not take any. The doc was so impressed with my B6 anti-neuropathy results that he is now recomending it for other patients. John Hopkins recently released a report saying that many cancers were the result of a vitamin deficiency. Who knows? But scaredy-cat me with all my awful lymph nodes is throwing everything I can find at the bad beast, even the kitchen sink if need be. Beating Cancer with Nutrition by Patrick Quillin is a pretty good book on the subject of supplements, though at times he seems a bit fanatical.



Take care everybody. It's great to be back. I want to know more about port removal. Does it hurt? No one's even brought the subject up with me, but maybe after my next scans.... Are other people with ports in getting them flushed out on a regular basis? How often? The onc didn't say anything about it, but I think it's supposed to be done.



Debbie M.

Bonnie conratulations on the birth of your great niece. How scary it must have been for everyone for a while there. So glad she is doing well and will be going home this weekend.

DebbieM - My rad onc told me no antioxidants (vit A, C, E) until after rads. I am so ready to start some supplements other than a multi vit. In place of that I am learning all I can about diet. Basically I figure I should not put anything into my mouth that isn't a fruit or vegetable or otherwise nutritional. Doing that will require alot of will power - but cancer will sure make you think twice about things.

Had my first rad treatment today. No big deal. I will be a pain making the 45 minute (one way) trip to the treatment center though.

Hope all have a nice November weekend.

Linda

Hi All,

Debbie M, I had my port taken out on Tuesday.  They gave me light sedation, I was awake through out and the doctor used a local.  I didn't feel much and was not uncomfortable.  Also, one of the chemo nurses told me that the ports should be flushed at least once a month if they are not being used for chemo.

Well, I am just waiting for a little thicker covering on top and I am going to shed my cancer hats.  I can hardly wait, although I will be cold until I adjust to not having the hat on.

I start the rads on Monday.  Take care everyone,

Thanks for the info, Debbie K. Everyone seems to get weekly xrays--I guess I'll have to ask why I'm getting them twice weekly. I have found out that what I have is probably truncal lymphdema and I'm going to the lymphedema clinic tomorrow to find out more about it. I think they can show me how to massage the stuff out of there. At least that's what I've heard and that's what I'm hoping. It's very uncomfortable to wear the tight prosthetic bras with the lyphedema and the heavy silicone prosthesis doesn't feel good either. I'm back to being cockeyed with my sports bras and foam prosthesis. It's always floating up and I discreetly (I hope) have to nudge it back down into place with my elbow. Sometimes this breast cancer stuff is just plain silly. I forgot my hair this morning and had to go back to get it. It is too cold to be bare headed. Hope you are all doing OK.



Debbie M.

Thanks for the info DebbieK and congrats on getting your port out!

Gracie - good luck with your mammo this morning.  I've had two since my first dx and they are a little stressful - it helps that we find out at the time as opposed to waiting like for most other tests we have to do.

Guess everyone is having a busy week!!  Good sign for our group!

Dawn

Port removal this afternoon!!!!

HAPPY BIRTHDAY to B445!

Had #6 of 28 rads today....... would be up to 8, but the stupid computers keep going offline!!!! GRRRRR!!!

Hope you are all having a good day! I'll report back with the port removal info!

Bonnie

Bonnie - how did the port removal go?

DebbieK - glad to hear your first rads went well.  Mine will start in December but I'm not ready to go over and check out the topics yet.

Gracie - so glad you got the all clear!  big relief hunh? 

I have an appt with my onc this afternoon since tomorrow is my last taxol!!  Finally.  Curious to find out what tests she wants me to do besides a muga.  I was one of the first to start chemo (6/1) and almost the last to finish; except I'll have Herceptin every 3 weeks till next August.  Oh well, whatever it takes.

DH suggested making a cake and putting a pink ribbon on it for the infusion nurses so I'll be doing that tonight.  Been a couple months since I've done a cake (have been decorating them for almost 20 years).

My office hired a masseuse to do chair massages for the employees - that was nice today.

Hope everyone has a great weekend!

Dawn

Yeah to Shrink for the last Taxol and shrinkage of the tumor!!!!!!! I think it so empowering to be done with the chemo!! Congratulations and I hope you are feeling well.



Barb

Dawn, glad you are on the last chemo YEA!!!....well, except for Herceptin, but still



Shrink, I posted on the wagons board, am also very glad you are done YEA!!! Hope everything comes out well, am praying for you



Bonnie, Doesn't it feel better just having that darned port out? I was so glad ot get mine out too, glad everyting went well. I had mine with just some numbing too, it wasn't too bad. I hope that blood clot has taken care of itself now with the port gone.



b445, hoping you had a good birthday. And are healing.



To everyone I have missed, keeping you all in our prayers



Gracie

Hurray for Dawn and Shrink! Getting away from chemo is so great. I didn't really even believe it for the first couple of weeks but when I didn't have to go in again--wowee, what a relief. I've had 2 weeks of rads now and am just starting to get pink in some places, the armpit especially, Garnetanne. But it's not too bad. I also have the tightness, but I was told that was from the lymphedema. I'm doing a lot of the same exercises we did right after surgery and also a lot of light massage. Deep belly breathing is also great for fighting lymhedema according to my therapist, so breathe, breathe,breathe. It's also a great way to relax.



I'm feeling pretty happy these days, though things are hectic. I'm getting ready to go back to work and it's good to be thinking about work stuff again. The rad doc has got me using this sticky burn ointment 3 times a day, so I have to sit around topless a lot. I am marked all over my left chest and both sides with bright blue crosses and lines in permanent marker (they don't do rad tattoos here) so I am quite the pretty picture. My fuzz has come in white also and pink may be the way to go.



Take care all.



Debbie M.

Dawn, woohoo, hooray and congrats!   How many more of us Junies are left with chemo? 

For those of you wondering about port removal, my dr's NP just did it with a local in the hospital.  I felt quite a bit of tugging when she was removing the actual port but nothing when she pulled the catheter...it's so much bigger than I thought!  No wonder it felt uncomfortable.   The stitches are almost gone and so are the bruises...yes, bruises!  My whole breast was bruised during placement but this time it's just a small portion, thank goodness.  I'm so glad to have that thing outta me.  :-)  

A funny-weird thing, I woke up yesterday with no eyebrows!  My head is full of peach fuzz but now I have no eyebrows, the eyelashes are still hanging in there.  

Dh and I just returned from our Florida vacation late yesterday afternoon.  It's good to be home and the kids and dog were happy to see us.  I was happy to see the house still standing.  :-)  It felt wonderful to get away for awhile though, just the two of us. 

Tuesday AM starts the next round of dr appts though so back to reality right away.
I've decided to get the genetic testing and go for counseling on Dec 5th.   I've got a second opinion on Wed, Nov 14th with a different onc about using an AI.   I hope I like this dr much better than my other onc. 

I'm sorry to miss everyone's news the past few weeks but I hope everyone is adjusting to their new normal and returning to work, growing hair and celebrating their strength of the last few months...hooray for us!!

Thanks for the port info Terry!!  Getting that thing out next FALL will be the highlight of the year for me!!  Thing drives me nuts.  So glad your house was still standing!! LOL

Cyndi - Thursday will be here before you know it!!  Congrats on the new job!  I know you and I have herceptin till next year - can't remember if anyone else is in this boat.  I've had the weekly taxol/herceptin and will have my first 3-week dose this Friday.  Have an appt Thursday with the rad onc again and doing the simulation; muga scan scheduled for Monday. 

Can't wait for eyebrows and hair that doesn't need to be covered!! 

Hope everyone is having a wonderful week!!

Dawn

Thanks DebbieK!! I really hope I have hair as quickly as you did. I have a friend from support group that stopped wearing her wig when her hair was about like yours and she said people at work actually thought she had cut it that short! I guess not everyone knew she'd been wearing a wig...She said people would say "Oh, do you like your hair that short?" And she was thrilled to have any hair! Someone on this board has as their signature "There are no bad hair days after chemo." Isn't that the truth!!

Cyndi