treatment plan

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Brnadebt
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Date Joined Jul 2005
Total Posts : 688
   Posted 8/2/2005 10:38 PM (GMT -7)   
Hi all
 
I finally had my first visit to the Oncologist today and I will be starting chemo in 2 weeks, then radiation and finally hormones. She spent 2 hours going over everthing with hubby and I . She also made copies of all of my reports.  I feel that she will be great help during all of this.
I had lots of questions and she took the time to answer all of them. The only draw back to all of this was that I had spots on my lung and spleen. They are very small 2-3 mm. She also told me that not all of the nodes were negative. My surgeon took 3 out and one had very early cancer cells in it. I also had lots of nodes in my chest wall that are enlarged. These were not tested so she had alot of concern about those. We will do the chemo and then more testing to see how they are.
 
For now that is all I will keep you all informed
Bernadette

JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 8/3/2005 5:53 AM (GMT -7)   
Hey, I had 3 of those little spots, on in each lung lobe on the right. Do you live in the South? We seem to get some sort of fungus down here that we breath in. It is probably something like that in the lungs. Don't know about the spleen. They did my scan again 6 months after the op and decided that this is what it was.
 
Sounds like a typical treatment to me. Be positive that you are going to feel good, take precautions about nausea, watch for neuropathy ( I never cross my legs -- just my weird idea) and you will be great.
 
JUJU

debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 8/3/2005 9:24 PM (GMT -7)   

Hi Bernadette! I'm sorry that your report wasn't as good as you had hoped it would be. But, it sounds as though you have found a fantastic onco. She seems to care and it is wonderful that she takes the time to answer any and all questions. I am sure that you are frightened right now and that is very normal. We have all been where you are right now so please don't be afraid to let us know how you are really feeling and what we can do to help you.

Do something really fun for yourself. You deserve it!

Hugs..Deb


 


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 8/4/2005 5:58 AM (GMT -7)   
Ditto to what Deb said....we're here for you. Don't be afraid to ask us anything, and try not to be afraid of what we tell you. Before chemo, I was sure I would get every single side effect that I was told I might get, and my nurse kinda chuckled and said "just wait and see". And luckily, I did not experience most of what I was afraid of...it all depends on your own body and your chemo. Do you know what you will be taking?
Hang in there, consider wig shopping now, and treat yourself.... retail therapy we call it!
L&H,
Lori


Brnadebt
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Date Joined Jul 2005
Total Posts : 688
   Posted 8/4/2005 11:37 PM (GMT -7)   
Hi Juju, Deb & Lori

Thanks for all of your encouragement I really appreciate it. Yes my results were NOT at all what I expected and if fact very surprising. I asked my surgeon for copies of everything that she had in her file and got an even bigger surprise. My tumor that I just had out was on a report from my mammogram in 2003 saying that was an area of concern even then and I had never heard a word about it. Unfortunatly I did not have a mammogram in 2004 or Im sure this would have been caught earlier.

Did I tell all of you that I start my chemo in 2 weeks? I will be taking taxotene, adrizemycm & cytoxan I was informed that adrizemycm is the one that makes you loose your hair so hello wigs here I come! How many treatments until you start loosing your hair?? I still have not found a wig store but Im going to get at least one before I loose my hair. How many days did you feel sick after treatments? I have lots of questions don't I? Did all of you have a porta cath put in? That is what I will have done. Did all of you loose weight? She also told me this will push me into menopause Oh joy one more thing to deal with.

As you can tell by my post this has not been a good day actually Im just kindof down.

Any info on where to buy a wig would be great, I sooooo appreciate the encouragement an total friendship from all of the breast budies here, Im not sure how I would be feeling if I could not sit down and write to all of you.

A friend is like a good bra.....its all about the support!

Hugs:)
Bernadette

Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 8/5/2005 4:22 AM (GMT -7)   

Bernadette,

The hair thing is freaking me out more than anything also. I won't start chemo until sometime in September. I called the American Cancer Society and they gave me a few #'s to call. One of them which I will probably deal with seems to specialize in the needs of women w/breast cancer. They have things other than wigs and they have a stylist that can trim the wig some. But you can only trim synthetic hair so much she told me, otherwise it will lose it's style. I'm having a hard time finding the color and in a style I like. I color my hair kind of burgundy. I did a lot of searching on line and did finally find 2 as far as style goes and comes in burgundy. They told me if you buy an inexpensive wig, it will look like a wig. My insurance will pay up to $350 for wigs so I am thankful for that. Call the Cancer Society and see if they have any places in your are that deals with cancer patients.


Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 8/5/2005 7:08 AM (GMT -7)   
Bern-
You may want to check the phone book or internet for places that do mastectomy fittings, they seem to also carry wigs and products related to breast cancer. I think the most common time is 2-3 weeks after the first AC treatment. I had someone shave my head a few days before it fell out, it was my way to be in control and take it out on my own terms, not cancer's terms. I never really felt sick, if you want to find my thread I started to you called "about that chemo..." i told you my own experiences...but keep in mind that 50 of us will have 50 different experiences, you cannot predict your side effects based on ours.

ACS is a great resource too, they sent me a list of wig places in the area too, or you can work with their wig bank to get a used one. I recommend wig shopping now, in case they have to order it, you want to be totally prepared before the hair comes out.

I am concerned about the spots on the lung, are they going to investigate it further before treatment?
Lori


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 8/5/2005 10:58 AM (GMT -7)   

Hi Bernadette! It is okay to not have good days right now. All part of this wonderful game. Okay, the chemo that you are going to be on is the pretty standart treatment that most of us had. You might want to talk w/ your onco about taking herceptin. This drug has a high percentage rate of keeping the bc from recurring.

You will probably notice your hair coming out about 3-4 weeks after your first treatment. It will remind you of a dog that sheds. You won't lose it all at once. My hair was short when I started on the chemo so my beautician and I just kept cutting it shorter. Finally one day, I told her to "buzz" it and because it was MY decision as to the time, I was ok with it. If you have a beautician that knows your hair, talk to her about where to find a wig. Have her style it for you. Also, for insurance purposes, you will probably have to use the words "carnial prothesis" for them to cover the cost. We began a program at my local ACS where any woman that had cancer could come to the office and get a wig. We have an arrangement w/ the beauty school and several of the local beauty shops where the wig can be taken and styled for free.

Try and have some fun these next couple of weeks. Remember that you can't do anything to change what has happened but you can keep your mental attitude ahead of the game. Laugh, get mad, whatever it takes. Just don't be afraid to share your feelings.

Lots of hugs and sending lots of smiles...Deb


 


Brnadebt
Veteran Member


Date Joined Jul 2005
Total Posts : 688
   Posted 8/5/2005 12:28 PM (GMT -7)   
Kattbird

Iam with you on the hair thing Iam dreading it so much I think Im making myself sick. I just wish that we didn't have to loose it. Im going to try and work through my chemo and the thought of a wig for 8 hours does not sound like fun. I went to another chat forum last night and they are all very honest but they scared me to death with their stories about chemo side effects and the pain a porta cath makes. Are you having a porta cath or an iv? Thanks for the info on wigs too. I decided I would get with it and have one handy.

Hugs:)
Bernadette

BAK
Regular Member


Date Joined Jul 2005
Total Posts : 44
   Posted 8/5/2005 12:41 PM (GMT -7)   
Hi Bernadette,

I'm sorry that you have to go through this with us but it is so comforting to have others input and to know that we are not alone in our feelings and fears.

My hair started coming out 2 weeks after starting AC ...( I started Taxol after I finished the AC). I had long hair that came out in BIG clumps when I brushed it. It was like the brush just grabbed it and it fell off. I felt like I had cobwebs all over me and it was awful. The next day was worse, I started crying and had my boyfriend shave my head right then.

I mourned the loss of my hair but it sure is easy to take a shower and get ready to go somewhere now. I'm still wig shopping...I have 2 I don't like. Mostly I wear baseball caps if I go out but I just go bald at home. tongue I got a lot of good ideas from people in here in another thread about wigs too.

I've had quite a bit of depression going through all this......also was "thrown" into menopause by the chemo. But I still think it is good to educate yourself about your type of cancer and all the info. Ask for your Pathology report and surgery report for more details. You need to remember that alot of the information that is online is outdated so don't get upset when you see things that sound negative. Many, many people go through this and we can help each other. My doctor says that you should not listen to negative people and that you need to pray. He says that new treatments are found every couple of years so if the cancer recurrs or something doesn't work then don't worry because another treatment will be available. He said people are living WAY longer than many doctors expect and that no one should tell you how long you will live because they don't know what God's plan is for you! (Another doctor I saw was very negative and gave me about a 50% chance of living 5 years....with chemo. I could not accept that!)

I do have a port that I got on my first chemo day and the 4 sessions of AC chemo was not the most fun i ever had. I survived it though.....I don't remember alot of what happened then...I think I slept through most of it! I felt bad for about 3 days afterward and the days increased with each treatment. I thought I would never feel good again. LOL I didn't feel good and was SO tired.
When I started the Taxol life improved alot! I've had hardly any side effects from that...just some numbness and tingling and pain where I had surgery and the ongoing tiredness. Just remember that the chemo will end someday...you won't feel like that forever.
And the hair will grow back.........it seems like a long time I've had no hair though! LOL

I gained about 15 lbs so far.. 130 lbs....yuck! The steroids with the taxol and going through menopause are what is doing it maybe? I never had this problem before! Usually I weigh 110-115 and I'm only 4' 11" so I don't want to gain more weight!

Also, don't be afraid of feeling down...I think we all have our bad days. I went to the Post office yesterday and saw a young man who I supervise at work who had not seen me for 5 months. He hugged me and was very concerned about how i look. I just started crying when i got in my car and got scared about going back to work in a couple weeks. I hope it goes okay.

Take care and keep us up to date on your progress!

God bless you,
Beth

JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 8/5/2005 12:42 PM (GMT -7)   

Bernadette, let me tell you about a port. First, my sister also had breast cancer and she is a Med Tech and has to stick patients all day. She does not like sticking a cancer patient because it is so difficult. She had only 4 A/C treatments -- that is it -- that is all. And she still wishes after 6 years that she had a port for just those four treatments. Chemo frequently hurts veins. I had 4 A/C and 12 Taxol. My sister recommended the port and I had that.

I have always had "good veins" according to my sister. My first A/C had to be given in the vein, it leaked, Onc RNS freaked and they recommended port to my dr. Of course, it had already been scheduled. Is it uncomfortable? Somewhat, turning neck can be "strange". It does not hurt during treatment. I always had the "freeze" before the treatment "stick".  Does it show? Yes, if you are thin. When it is time to remove it, it is very easy and quick.

My only real problem with the port was the anesthesia when they put it in. It made me sick and on top of it, I got a sinus infection, so I was down for about 3 weeks. I am sure you will get other opinions from the ladies here. I recommend you base decision on how many treatments you have.

JUJU


BAK
Regular Member


Date Joined Jul 2005
Total Posts : 44
   Posted 8/5/2005 1:02 PM (GMT -7)   
I agree with JUJU. The port is a good thing.

I still have to get blood tests every week in my arm but I could not have survived chemo without the port. I was given lidocaine cream to put on it before chemo so it doesn't hurt at all. I put it on an hour ahead of time and then two more times while I'm waiting and rub it in real good. A nurse said to put a big glob on it but just doing it 3 times and rubbing it in works good for me.

I had some trouble with the anesthesia as well, JUJU......afterward, the same day, I got through the chemo just fine but had taken blood pressure meds that morning and, for some reason, my blood pressure suddenly dropped and I passed out by the elevator as I was leaving. I scared a few people LOL and they almost admitted me overnight. I felt quite sick that first time but used all the nausea meds and things and the other times were ok.

The port itself doesn't cause me pain, Bernadette,...it does stick out a bit though. Don't be afraid of it. I don't know why people were saying they had a lot of pain from it. And I am a big baby! It was sore for a couple weeks but not as much as my incision so I didn't notice it much. I think that you should not go chat with others too much ...it may scare you more than help if they say that kind of stuff. I have to admit that I thought chemo would kill me and was pleasantly surprised that it is not that bad.

Hang in there! We are cheering for you!

HUGS
Beth

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 8/5/2005 1:27 PM (GMT -7)   

to port or not to port....

I asked my RN about one and she said "you only need 4 chemos, let's wait and see how your veins do." I was lucky and had great veins befor chemo. Now they are ok, but definitely not as easy to find....but no tech has had problems with finding a vein on me since then, just does not pop out.  They also had a pretty easy time finding a vein for chemo, so it worked out for me. I did have a part of a vein in my hand get red and tender during the last chemo, and it actually disappeared...sort of faded away. Overall, i am glad I did not have to deal with a port.....BUT those on this forum who had one seemed to love it. 

I also had to do weekly blood draws for 12 weeks, but tolerated it well.

As for side effects...the fear of the unknown is the worst! Try not to get frightened by the horror stories....for every horror story there are probably 20 that breezed through it. I for one did, and there is no reason to expect that you won't either. I worked full time, taking off only a couple days each chemo cycle. I also wore a wig to work and it was not itchy or bothersome, but I did take it off as soon as I got home.

Learn all you can, but don't expect the worst....take control and do what you need to do to remain in charge of yourself....we're here for ya!

Lori



possitive
Regular Member


Date Joined Mar 2005
Total Posts : 239
   Posted 8/5/2005 3:42 PM (GMT -7)   
Bernadette,you might want to get some bandanas and scarves.Ithought i would want a wig but i never wore one.I ended up wearing scarves and bandanas,and going bald at home.Before chemo i had hair to my knees and when it started to fall out on my second treatment i shaved it.One good thing about not having hair is it doesnt take very long getting ready in the morning. Hugs, Tammy

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 8/5/2005 6:36 PM (GMT -7)   
Tammy...LOL...I was just the opposite. I bought scarves, bandanas and hats and never wore them. It was too cold to go bald (late winter/ early spring in Michigan) so I wore a turban thingy at home, but never wore my other things. Always wore a wig in public. Goes to show ya, that we are all individuals and to each her own!

L&H,
Lori

p.s. yes, getting ready in the morning was a snap! And my skin never looked better than during chemo, a great side effect for me!


Brnadebt
Veteran Member


Date Joined Jul 2005
Total Posts : 688
   Posted 8/6/2005 10:35 AM (GMT -7)   
Beth, Juju, Kattbird, Lori & Tammy

Im so happy that have all of you to talk to, Im not sure how I ended up on that other chat forum but those ladies were down right negative. Im not at all like that I always look for the positive. I did really well with my surgery and node removal so I cant imagine that the port could be that bad.

Beth you mentioned that the taxol made you gain weight, did you start that after your regular round of chemo? My chemo is going to be TAC. I hope I dont gain weight I was hoping to loose some.

As far as the wig, hat or baseball cap I need to find a store and just start trying things on. And the thought of getting ready in about 5 minutes is pretty good. There is always a positive in everything if you look hard enough!

Im still going to get the port I think it will be alot easier in the long run. After having the nurse trying 4 times to get my iv in Im thinking a port will be just fine, my hand is still green and it has been almost 2 weeks. I do pretty well with pain so it cant be that bad. I hate throwing up though but Im going to have to get used to it.

A friend is like a good bra.....its all about the support.

Bernadette

JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 8/6/2005 11:01 AM (GMT -7)   

Hey, don't think you are going to throw up. Have you ever had any experience with anti-nausea medicine. Fortunately for me, I had. Some meds work, some don't. For me, I got to use the cheap stuff, phrenegan (SPELLING??). Also, take as a preventative, not as a treatment. Also, I noticed early on that turning my head caused me nausea, so my med onc gave me a prescription for a motion sickness patch that I used for 3 days. Between the med and the patch. I was fine.

As for eating, you will find out when the best time to eat is. Again, you are a positive person, so be positive you'll be fine and chances are you will be.

 

JUJU


Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 8/6/2005 3:21 PM (GMT -7)   

Can you all tell me about this porta cath? Where does it stick out from? etc... I go for consultation on 8/17 to a Medical Oncology & Hematology office. I guess this is where they will tell me what kind of chemo and drugs I will get??? Does anyone know if they will prescribe med(s) for nausea right before the chemo starts?. I hate the thought of being sick.  Someone here mentioned about drawing blood each week. Is that as soon as chemo starts? And who normally does the bloodwork, the same place that gives the chemo? Sorry, for so many questions at one time. This trauma will be upon me before I know it. My underarm is still sore from last week's surgery.

Thanks

{{{hugs}}}

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