Calling all TNs

mags20487

spica...I have not gotten my feeling back in either armpit.  My left side is worst as 18 were removed.  The backside of the arm is still numb too and just seems to hurt...I do have LE unfortunately in that arm  The dog ears are awful...hate them so much...getting surgery on Tuesday to replace a failed flap and this time it is coming from my butt!  Then I can get the doggies removed for the next round in a few months (dog ears are from the mastectomy surgery where the surgeon pulls the skin back together....they are flappy things under the arms leftover from the surgery)

Maggie

Cocker_Spaniel

Just half a day to go then the weekend yay

ypecora7

Hi ladies,

I'm totally new to this and I truly wish I would have known about this before. I think this is great and all you ladies are wonderful.

Well I'm 37 turn 38 in April. I found my own lump on my birthday while taking a bubble bath in 2011 was a stage 2. Haven't had a bubble bath since.. I had a lumpectomy and bilateral breast reduction and had grown to stage 3. Then I was told I was triple negative and wished I would have chopped them all off. Two surgeries later due to incisions, I started dense chemo. That took longer than expected due to side effects. Then radiation which had its issues. I see my onco every three months and every 6 months my breast surgeon. Have mamos, and all other tests.

Finally had my port removed this past Wednesday. I thought I was going to have it in me forever. Thought really good after that. Saw my onco and surprise now other things have been going on.

Let me backtrack, as a side affect to the chemo not only did I get a slight sugar problem but also started menopause. They have determined that it's best for me to get a hysterectomy because I can't take how bad I'm feeling anymore. They want to leave my ovaries in due to my age. Not sure if having my ovaries left in is the right thing.

The reason why I bring this up is because my onco wants something done, because I'm anemic. But now he just told me that I also have something called Anemia of Chronic Disease. He told me I have to see a gastroenterologist. I'm worried because this is the inflammation of the liver and can be due to the new growth of cancer cells not necessarily in the liver. But somewhere. I wanted any feedback that anyone can give me. I truly would appreciate it. Thank you so much I think this is such a helpful and great way to talk to someone that is also going through what you are facing. Thank you so much again. Have a wonderful night.

Xoxo

Yani

One more question. You are probably going to think this is silly or dumb but when are you in remission. I admit that I have been afraid to ask my Dr's because of the answer. Is after surgery, after radiation, or when. Thanks again and all a speedy recovery.

NavyMom

Spica, thanks for your sweet support and understanding.  Glad to see you post.

Lisa, a dog ear is a little, or for some gals, a big flap of skin at the end of an incision line. 

Mags, best of luck to you as you go through this reconstruction.  Sending postive thoughts your way.

ypecora,  Heartfelt welcome to you.  You have found a wonderful place for support and understanding.  I am so sorry that you are still having such a bad time.  A thought came to me when you commented that the Dr. wants you to have a hysterectomy but leave your ovaries.  Are you BRCA 1 & 2 negative?      And in regards to the word remission.....I don't use it.  But I do use the term "no evidence of disease"  Better known as NED.  And that means just that....No evidence of cancer upon completing treatment/sugery/rads.   Hope this helps a bit.  There will be other gals coming along soon to offer more info for you. 

5thSib

Teresa008 -- I think the TN diagnosis is hard on all of us. It was a total shock to me because they were talking surgery, then radiation, and followup with a pill. I was so relieved I was not going to be looking at chemo. Then the surgeon told me about the TN. He wouldn't even look at me. He kept his back to me and said he was sorry that is was worse than we had thought. He did finally end with telling me we could still beat it, but it was going to mean chemo. I think that was the first time I cried -- not right then, but when I got in the car. I kind of got my news in stages. I was told right after surgery that the SN was negative. Then a week later they said more indepth study revealed it was positive. Then it was about another week before I got the TN news. I really think that it is important for you to be comfortable with your oncologist and treatment plan. Talk to your gyn, maybe he can recommend someone for a second opinion and get you in quickly.

Had treatment # 6 of 12 Taxol today. I feel so much better than after AC treaments. I didn't feel like getting on the computer for days after an AC treatment.

ypecora7

Navymom

Thank you so much. To answer your question yes I'm Brac negative. And I totally like NED instead of that other word. Thank you.

Tazzy

Cocker - your post was perfect timing.  I sent that to my friend who is also my boss and scared shitless... has her surgery March 5 (she's also in denial).... she fell about laughing at it - which was what I wanted.

Hugs to all xx

Hopex3

Guy girl...Congratulations on almost three years! I'm naive on lymphedema. I thought if you are one to get lymphedema, that it happens right after surgery. Or can it happen at anytime?

Spica16

Okay, Cocker - were you commenting on our dog-ear conversation...or did you just have perfect timing???!!! You're a gem!

~ Shar (If my dog-ear was that cute, I'd name it and keep it!!!)

NavyMom

Well, DUH!  I didn't even connect the dog ear conversation with cockers picture of the cute pup.  Too funny.  Thanks for opening my eyes, Spica.  I am sitting here laughing at myself.  I think I'll just blame the chemo brain.

InspiredbyDolce

Is the floppy thing on the arm, where it hangs and is loose underneath?  Is that what you are all talking about?  

melissa119

Ypecora7... Welcome. So sorry you have to be here but these boards are a wonderful place for support and knowledge. I see you are from west New York nj. I grew up in north Bergen. My parents still live there.

And on the remission question. Do you believe my MO told me last week at my first 3 month followup after chemo that in her book I am cured! I cried and asked her to repeat herself. She said I was stage 1 and had BMX with chemo. Of course there is always a chance but she uses cured.... Where are your drs? My BS, PS and MO are all in Hackensack.

Melissa

Spica16

Oh Dolce, after all the post-surgery/physical therapy arm exercises, climbing the walls with our fingers, doing hand-pumps to keep the lymph flowing...none of us have flappy arms anymore - we're buff! Hehe.

The "dog-ears", also inelegantly known as "side boobs", are flaps or pouches of skin at the end of mastectomy incisions, usually under the arm (where your bra band is) The surgeon leaves extra skin available in case you want reconstruction later. Hopefully they are not caused by the surgeon doing a sloppy job. Some gals even have them at the beginning of the incision, in the middle of their chest. I think this tends to be a problem more for us well-endowed gals. (I'm a 42D - that's a lot of extra skin to deal with!)

My surgeon does a wonderful incision that is very neat. Unfortunately, he left the extra because "you're still young enough that you might want recon" (I'm not and I don't). He gathered the extra skin towards the mid-line, and trimmed it away, finishing with a >. So my total incision looks like >---- , with the dog-ear being a soft round bump at the end. He will make another < to get rid of the extra skin, and my final incision will be >---< , nice and smooth.  It's a short, easy day-surgery, and superficial, so NO DRAINS involved!

Last year I put up a photo of my incision, with the rad tech's drawings on my chest, for radiation boosts. It cost too many people their computer keyboards when they spit out their morning coffee while laughing. I don't think my insurance would cover anymore damage!!!

Think Spring! ~ Shar

ypecora7

Melissa119

Hi. My doctors are all in Englewood Hospital. They have been great and I'm very comfortable with them.

Let me ask you something. I'm planning to move within the next 2 to 3 years and I guess my fear is the switching of the Dr's. That kind of freaks me out a little. I know it's dumb because you can always find new Dr's. I guess for me is that I truly am comfortable with them, the hospital in general has been great, including the infusion center etc. I guess I'm afraid that if I move to a different state it's just a whole new ball game. You said you used to live in north Bergen so don't know if your still in NJ or not but what do you think.Thanks...

InspiredbyDolce

I just checked and my bat wings are almost gone - I think it's the pushups knocking them out. 

I too had this little tiny pucker at the very end of the incision line.  It's worked its way flat now, and I can't see it anymore. He said it would go away in time, and I guess it finally did! I do know to make scars heal quicker keep out of direct sunlight, and by the way, the sun can still go through cheap bathing suits, which mine is.  So I put something either outside the bikini top or inside it to create a barrier so the sun can't get to the scar line.

I go through this breast surgery again in 2 weeks!

Have a great Friday everyone - much love!

teresa008

Hi all,

I saw my oncologist today and she has told me about a study that she wants me to think about. It's a two-drug versus three-drug study. The two drugs would be Taxotene (sp?) and Cytoxan and the three drugs would be Adriamycin, Taxol and Cytoxan. I won't know which option I will end up with until I am accepted into the study. Any opinions on one or the other being better? If I don't want to do the study she wants to do the three drug option. I need to have an answer by Monday so any opinions would be appreciated.

Thanks so much.

Hopex3

teresa....I know they used to give all three drugs at once..calling it TAC.  Some people still get it that way but it can be hard.  I had the Adriamcyn and Cytoxan (AC)  together for 4 weeks, every other week.  Then I had Taxol by itself for four weeks, every other week. I did fine with AC, except fatigue and Taxol was hard on my bones.  But I still continued to work all the way through.  Some people have symptons with the AC and none with Taxol.  Everyone reacts different.  I had really good results with chemo.  If I were to do it again, I would do the same.  Ask her if you did the two drug, would you be doing taxol at all after you were done with the two?   

jenjenl

I am 3/4 of the way being done with TAC now.  I get all three at once, treatment every 3 weeks for 18 weeks. 

gillyone

Teresa and Hope - my understanding is that when it is TAC it is taxotere, adriamycin and cytoxan given all at once, usually 3 weeks apart for 4 or 6 cycles. TC and AC/T are of course other options. Many of us have had AC/T. It seems to me that this study is to compare TC and either TAC ot AC/T - I can't tell which from your description. I don't think any of us can say one is better than another, only tell you what we had and how we fared and how we are doing now. Doctors would not offer an option that they thought was "less good". There are so many considerations in deciding treatment. I think you have to be comfortable with your oncologist and trust his judgement.              

NavyMom

Theresa, My Onc let me choose if I wanted to do TAC or AC/T.  Since I was uneducated about chemo at that time, I had no clue what to do.  So I asked her to give me what ever she would order for her own sister.  And she chose TAC.  She explained to me that both methods were equally effective in success rates.  She chose TAC because for me because she felt that I was in good shape and no other serious or chronic medical conditions.  I have been reading on these boards that some researchers are believing that giving "A" (adriamycin) is over kill for BC.  So that might be part of what the study project that your Onc is considering is looking at.  But you should be able to have the last word on how you want to go about chemo.  Do what feels right.  Ask tons of questions.  Bring someone with you to you appointments and have them write things down for you.  Best of luck to you.  And BTW I did pretty good on TAC.  Almost 4 years since dx and enjoying life.

Spica16

Hello Teresa,

To me, what your doc is asking you...are you willing to be in a trial where you will be given  either chemotherapy regimen (TC) or the other chemotherapy regimen (TAC or ACT)? Since she told you that you would not know until admitted into the trial...that is the gamble. You would not be making the chemo choice, just the willingness to be in the trial and receive whatever they assign you.

Like Gilly said, they would not assign you to a lesser chemo. Both have proven good results. It sounds like they are trying to fine-tune or streamline the chemo regimen. The more they can reduce the drugs given, the better chance of reducing toxicity, and therefore recovery time for the patient. There is a delicate balance of finding the minimum dose needed to eradicate the cancer and the absolute maximum dose that can be tolerated by the patient. If two drugs in combination work better than 3, it's a win for us!

Participating in the trial could be exciting, since it is an important part of fighting this nasty beast. If you like that idea, go for it! If you need to feel more in control of your treatment, and don't like risk, then it may not be for you.

Your doc told you what she would give you if you decline the trial. That is what she is comfortable with. Kudos to her for giving you this opportunity, even if it is a hard decision to make. Most of us never get this chance.

Best wishes ~ Shar

P.S. You can search for the trial information on clinicaltrials.gov

teresa008

Hi,

I still haven't made a hard decision yet on the chemo regimen. I did stop by the medical wig place though, and she asked me if my oncologist had said anything about an arm sleeve and gauntlet for edema? I had not heard anything from her about it. Does anyone know if it matters how many lymph nodes were removed, as far as this condition being a problem for me? I only had two lymph nodes removed. All of this stuff is so confusing.

Thanks so much for your help with any or all of this stuff. I truly do appreciate your time and thoughts, all of you who have responded to my questions.

Sending out my best thoughts for all of you.

gillyone

Teresa - I have a sleeve/gauntlet that I wear when flying. When my oncologist suggested it, it was as a precaution, not because I had lymphedema. Oncologists often make this recommendation, but I don't know anyone who uses one on a regular basis unless they have been diagnosed with LE.

Cocker_Spaniel

What do you think ladies shall we all meet here one day??

ypecora7

Hi Teresa

I hope this helps a bit. I took place in a trial. My onco said I would be a candidate and if I was interested. It was either receiving TC or ACT. You wouldn't know what you got until day before your first day of chemo. It was randomly done. It was also that if you got TC it would be shorter chemo but every week if you got ACT chemo would be every other week take a bit longer plus they would add three extra weeks at phase two of chemo the toxil part.

I'm not going to say it was an easy decision to do because it wasn't. You need to see what is best for you and how you feel about it. I think that's something that only you can decide. It's personal to everyone. I can only tell you that I did it for a couple of reasons. First I figured that if by doing this I would help future bc patients to make things easier or better in any way then I'm all for it. Can't let this monster get the better of me and if there's a way that I can aide in killing it so be it. But it wasn't an easy choice. Another reason was that because you are part of this trial the Dr needs to keep a closer eye on you and I personally felt more at ease with that. All I can say is weigh in your options and whatever you feel more comfortable with go with it.

Eventually I was given ACT. I lost my hair everywhere in the first phase of the chemo and yes I was very tired and nauseous. But for me phase 2 was worst because I ended up getting diabetes because of one of the meds. It elevated my sugar the first time almost to 450. I had to start giving myself insulin for the first time ever. Along with having very bad neuropathy. That hasn't completely left yet. But everyone is different. A friend of mine had hard any side effects at all. Thank God my sugar has gotten better. I don't take insulin anymore. But I do take one pill a day until it completely lowers itself back to normal. Dr says with time.

Also just to let you know I had 3 nodes removed from me. I never had to wear anything. They did tell me to be careful. Don't let them take blood on that arm or blood pressure. So I don't. One of my nurses told me that you can get lymphedema at any time in your life. You need to be careful not carry any thing to heavy on that arm etc. I'm lucky because I have my other arm. So I try to use my right arm more. Just be careful.

Also I ended up getting a wig. It's part of the hospital. They sized you etc and didn't cost anything. It was a gift. I only wore it once. To a dinner party I had to attend. The rest of the time I used my scarves. I got so used to them it was hard giving them up. I truly hope this helps you. I wish you all the best and stay strong. All the best to you.

Best regards,

Yani

Spica16

Gilly - I seem to be following you around, today! That's because you always have such good answers!!!

Teresa - I was measured for a sleeve/gauntlet by the fitter for my breast form and mastectomy bras, and insurance paid for it. My BS must have authorized it. Like Gilly said, it was precautionary, in case I needed to fly or was going to engage in activities that could allow lymphadema to become an issue. Anytime the lymph system is jeopardized, by node removal, radiation, or obstruction of drainage, such as from scar tissue, lymphadema can arise. Unfortunately, we are at risk for the rest of our lives.

Get a set - as a safety measure. There are some with really crazy, fun patterns!

Yani - WOW! I was getting ready to send this, and your answer showed up. You have the voice of experience to help Teresa out. Isn't this BCO site great?!!! Thanks for taking part in the trial - it benefits all of our BC sisters! 

~ Shar

ypecora7

Spica16

It's my pleasure to help in any way I can. I think this site is truly great. I truly wish I knew it existed back when I started all this. It would have been an immeasurable way of help. You are told you have bc and its shocking news to say the least.Having a support group that you can go to that has been through what you are about to embark is so great. You may have family members there for you but it's not the same. Your answers can be answered by a support group and they can truly understand because they've been there. So kiddos to all of you.



Theresa: I just remembered. I had to sign and read a whole bunch of papers to take part in the trial. One thing that I did agree to was to have my tissues,reserved and looked at so that they can be studied further. That way they can further do study's analysis, etc. It was an extra choice that you either said yes or no and signed.. But that was up to you and didn't have nothing really to do with the chemo trial. Like your decision wasn't going to get you off the trial. This may apply to your trial and it may not. I just thought to let you know in case. Good luck again.

All the best.

Yani

ypecora7

Cockerspaniel: By the way I think that pic is beautiful. It looks so tranquil and serene. Is this a real place somewhere? Looks like a postcard pic. Great pic.

SherylB

teresa008,

You need to discuss the heart risks associated with Adriamycin with you MO. It is risky for anyone with possible heart issues and the effects on the heart don't stop when the drug is done. It can have lasting effects. There is much to consider when taking what is known as the "red devil". I have many other health issues and we decided not to go with the Adriamycin, I had a small heart attack even though clean coronary arteries (it was a stress spasm when my mom died). Both my mother and brother had open heart surgery so for me it was a no brainer, No Adriamycin. If you go with the big A you will usually have extra testing on the heart before starting. My MOs PA who has done strictly oncology for >15 years told me she had one patient who wound up needing a heart transplant, and felt that using Taxotere and Cytoxan would do the trick for me.  

I don't mean to be all doom and gloom but knowing the risks before making a decision is very important to me.

Sheryl

natL12

SherylB- You just answered a question I've had in my mind ever since I started reading about ACT vs Cytoxin/Taxotere.  Which is...why didn't my MO even mention there was a choice?  I had open heart surgeries (2) four years ago to repair leaky valves. So that's problably why the Adriamycin wasn't mentioned.

Thanks for answering a question I'd never asked.

others- regarding lymphedema. I had only one node removed, tried to follow the guidelines to avoid LE, and still got it!  So who knows what will happen. Worried a lot more about neuropathy...and only got it a little bit. (Fingertips and toe tips.)

Nat