Calling all TNs

ud45

slowloris- sorry you have to go through this again. you may want to seek 2nd opinion from an onc that specializes in TN. It is surprising that the lump reappeared so soon after you had a good pathological response to the previous chemo. I pray that your new treatment eliminates all the remaining cancer cells. Best of luck to you. 

slowloris

Grammy98, yes i currently use FMLA. part of my surgery recovery was the month of Januaary (I had pretty bad cording), then I was leaving work early every day for radiation(6wks). Now theres a myriad of pretreatment testing, besides chemo and it's effects. I wish to continue to work as often as I can, just concerned because my MO said I may be chasing this cancer for the rest of my life, however long that may be?? Partial paychecks are manageable, but if I don't tolerate chemo as well as I did the first time, finances will become an issue. I'm just trying to gather info so if and when the time comes, I will be prepared. Regular retirement will be in 6 yrs (God willing), so even disability retirement may be an option. Still young at 50.

Lovelyface, being new to this at times seems overwhelming.I'm Learning to navigate this board.  I tried to set my settings for my profile, but for some reason it won't take my biography (the save button disappears after I type info). I may have to get my daughters to help me, unless theres a glitch in the system.

LuvRVing, thanks for the info on Gemzar. I'm seeing my 2nd opinion this afternoon, will compare each recommendation. What are the SE's of Gemzar?  Will I be bald again?

5andcounting

Help. Had a local recurrence. Gemzar and carboplatin Or taxotere and carboplati

n?

Stupidboob

I have been wondering if drinking filtered water might be taking the little bit of Chlorine out that might be killing cancer cells..............what is your thoughts?"

Stupidboob

crs319 I am sorry............I can't offer any advice but I am sorry.   I am currently on Cytoxan and Taxotere for a regional recurrence

Stupidboob

jenjenl thanks for sharing............I don't mind the crying part as much and I do the thoughts of death all the time........glad you are doing better on them

Stupidboob

Phyllis glad to see you posting..............I have never heard of  truncal lymphedema, but I will look it up as I like to learn. 

I am not sure what post you were referring too, but I don't have an little ones...........just my furbabies...:)

kathyrnn

Hi Ladies,



Finally got caught up on the posts. So many newbies and reoccurrences. I am so sad to read all this. (Nice to so many old friends)



I need the collective wisdom of people with reoccurrences.



I have a local reoccurrence. (I don't know if that is the correct description, it's what they're calling it. It's not in my breast it's in sub-pectoral Level 3 lymph nodes. I just saw someone on here describe that as a regional reoccurrence?)



I'm having surgery Tuesday. I went for a second opinion, who told me to go ahead with the surgery and to take the recovery time to consider my chemo choices.



My original doctors have been honest in telling me that the cancer has probably been there since the original diagnosis and wasn't killed by the original treatment. (They told me that the Sentinel node biopsy works for 96 out of 100 cases. I'm one of the unlucky 4).



Ok, this is where it gets confusing. DF (original) is not giving chemo recommendation till after surgery and Tumor Board. (This I understand.) They did tell me there was a possibility they wouldn't be recommending chemo (hence the second opinion. ) The second opinion referenced the CALOR Study (I have a copy that may help the person who just mentioned it on here, find the actual study) and said she would definitely recommend chemo.



Finally ladies, after all that, lol, I'm finally getting to the question.



My first dx I had 12 Taxol and 4 AC. She is recommending 4 doses of Taxotere & Cytoxan.



Finally the question!!! Taxotere and Taxol are very similar drugs and I already had Cytoxan. If they feel this is leftover from the original treatment, what good will hitting it with the almost same drug combo do this time (if it didn't work last time, why should it work this time?). Only answer I can get is "it's standard treatment". Doesn't reassure me, "standard treatment" is what got me in this boat :-)



Also, anyone with a reoccurrence, what were you treated with the first time.....and then what did they use the second time?



Thanks ladies. My faith in oncology care is a little frail right now. Bless my primary who listened to me and did a CAT.

kathyrnn

Ohhh, I forgot to tell Stupidboob, I loved your reference to room on the couch! I'm on the couch with you girls......I just haven't had any time to sit down with y'all yet. ;-)

buccaneersdj

This is a copy and paste I posted in the Chemo Aug 2009 group...I thought  I would also post it in here since it pertains to TN...Thanks (this was an update to a PET scan my Onc ordered after my tumor markers went from 27 to 42 in six months, prior to the 27 reading they were 32???)

*Update* On Monday I had the PET scan on which they did a 'wet read', so that I could see the Dr. the same day. Nothing abnormal, although I did have some uptake in my ovaries in particular the left one. I am being sent for an pelvic ultrasound. I also was tested for the BRCA, since I have a daughter. My onc. seemed to think we should just do a hysterectomy, my question was since I was TN what would my ovaries have to do with a recurrence, since my cancer was not hormone driven? Has anyone else had this topic come up, about the hysterectomy. I will let you know when I get the ultrasound results...by the way also doing labs monthly to see if my tumor markers keep going up... {{{HUGS}}} Donna

5andcounting

Kathryn -CALOR definetely shows chemo benefit. Trouble is. There is not a definitive protocol. My onc wants taxotere and carboplatin. Many different opinions. Tommoriw I will try contacting duke and md Anderson to see what they think. It's all guess work I think. They know chemo works. Just not what does best. I will share what I learn. Do the chemo though. It's worth it. Also my onc said low fat (under 25 percent) diet is critical for triple negative. He said don't blame myself just start eating, exercising, and do chemo and I should have 70 percent chance of remission

Anonymous

Stupidboob - I would explain why I thought you had kids, but I have no idea why I thought that. Thinking is not one of my superpowers this week.



Kathryn - I had MDA protocol of T/FAC the first time around. This time they recommended Ixempra and Xeloda. Then rads to level 3 nodes. (All level 1 & 2 were removed in ALND.). They are calling it a local recurrence but treating it as stage IV since it was back so fast. I will have scans again after 3rd round to assure no mets.



I am like you and not really trusting anything anymore. The bad part is that I don't have a medical degree! That would sure help in making these decisions. Please let us know what they recommend and what you decide.



Phyllis

slowloris

well, my 2nd opinion left me feeling more optomistic and a little confused. 2nd MO suggests I use Xeloda as chemo for my recurrance as opposed to carboplatin and gemzar.  Oral meds are more appealing than IV,but want to get the best posssible treatment. She also told me my PET scan was better than my original PET wtih my 1st diagnosis, as there did not seem to be lymph involvement. 2 questions:

1. anyone have good results with xeloda?

2. Are PET scans always accurate?  seems like it was quicker than the first time - did they not let the dye sit long enough?

Titan

hey kathryn..good to hear from you even though you have sucky type news..missed you lady..know that you are busy...find some time to go play some poker...do you hear me?  you have so much on your shoulders with your mom and your own health..no one said it would be easy...dang it.

welcome to all the new ladies here....tn is a sneaky bastard....i dunno..you do what you can and hope for the best....I'm four years out but will never think I'm in the clear..won't go there....but I will tell you that my life now is fairly normal..whatever that is....lol...

sweetpickle

So sorry to hear about the recurrances. Does anyone know what the average recurance rate is?

gillyone

Thinking of you Donna, but I can't answer your question.

Cocker_Spaniel

NavyMom

I hope this will be your boy soon. xx

Luah

So sorry to hear about the recurrences. I can't offer any insight on secondary chemo regimens, just wishing you all well.

buccaneers - are you BRCA+, or are you still waiting on results? BRCA+ women have a significantly higher risk of ovarian cancer (20-45% I think). Not sure what, if any, role hormones play in that, it is what it is. And given the difficulty of detecting ovarian cancer early, many opt for Hx especially if they are past their child-bearing years.  

PeggySull

Kathy,i have not had a reoccurrence yet, but if I did, I would want to know what other chemo options there are, for just the reasons you mentioned. You could get some ideas from the recurrence thread to run by your oncologist (and a second onc) asking risks and benefits. Since chemo is a systemic treatment ( I even lost precancerous cels from too much sun while on the same regimen you were on?



I think you're right to consider all the chemo options!



Hugs,

Peggy

minxie

So sorry to hear about all the recurrences . When I had mine, they did not recommend chemo - but that was a year ago and it sounds like things have changed. They said if I did want to do chemo, it was my choice - but it wasn't AC/T like I'd had before, which was obviously ineffective. It was a combo that I hadn't heard much of before, and sorry I can't remember. This was per Dr. Carey at UNC. I only did rads for local recurrence since I hadn't done a full course of them yet.

On to an unpleasant topic, pls skip if you want... How much of a life expectancy do you all honestly feel you have left? Not just with cancer recurrence - is there any info out there on the toll chemo and rads takes on life expectancy? I ask because I'm chipping away at my 401K because I honestly feel there is no way I'll make it to retirement, based on my nodes, local recurrence, and overall feeling like crap from chemopause. I'm almost 47, cancer showed up at 42. I guess TN hasn't been around long enough for there to be any data on this. What have you heard, what do you feel?

PeggySull

Minskie,



Like you, I was eager to hear my odds of having a long or short life expectancy. Using statistics, I was told that even with my early stage tnbc I had about a 20 percent chance of recurrence in the first three years following aggressive chemo and double mastectomy. I freaked out initially. This still doesn't tell me the chances of dying, since there are new treatments to try.



As for the money issue, that's a hard one. My husband and I will basically be living on social security with our meager 401Ks for emergencies. We are moving to an area with a much lower standard of living. I go in and out of worrying about money in retirement if we get that far. If you are disabled by cancer for a year or more (consecutive) months, you can apply for social security disability, which was a source of security for me when I had another illness that disabled me much more than this one some 4 years ago. I fought for my benefits as I had worked and put into the SS system for forty plus years. You can still earn up to a certain amount of money and still get benefits. If you want to hear more about this option PM me. Even if you never use it, it can be one source for financial peace of mind.



Hugs,

Peggy

Stupidboob

kathyrnn:  I think you might be talking about me with the regional recurrence.  Mine is behind the pectoral muscle and up the lymph nodes to the collarbone.   I am not sure but I am thinking yours might be a regional as well from what I have read but there are so many little things that make things so much different.    So, your surgery is that to remove the lymph nodes?   I had 15 removed.    What is the Calor Study?   I am going for chemo tomorrow and I too will ask my doctor about the Taxol/Taxotere.  From what I can understand Taxol is great at killing the cells but leaves behind the stem cell and the Taxotere does not.   With that being said it is one of those things that you need to read up on yourself so that you can take from it what you feel is the right reading.   There is allot of information that even the MO do not agree on.   THAT IS SAD!!!   We will be waiting on the couch for you when you have time to sit.  First go around for me was AC then Taxol.  Second time I am getting Cytoxan and Taxotere.

TO ALL LADIES:  I did not have to have radiation at the time of my surgery (mastectomy) because I only had 2 lymph nodes positive and the rule then was 4 or more or a tumor larger than 5 cm.  THE NEW INFORMATION NOW STATES ANY POSITIVE LYMPH NODES NEEDS RADIATION NOW.......while I did not want to do radiation I sure would have preferred it to doing chemo again and then radiation.  

Phyllis:  No biggie on the little ones............:)   To me they are my kids so that is a true statement in a way..:)

Sweetpickle:  From all I have read the first 3 years are the worse for recurrences.  I was just a couple weeks shy my two year mark.

Stupidboob

slowloris:  Did they let the radioactive glucose sit for an hour?   I had to sit in a dark room for an hour while it ran through me. 

Stupidboob

On the life expectancy subject:  From the way I feel right now, I don't think I will have a long life.  I try to stay positive but what good did that do me..........it still came back and I thought I was on my road to beating this monster.  I read in Dr. Susan Loves book that with a recurrence there is a shorten life expectancy but she also states that we are not a statistic.   I have never come right out and ask because I am one of those people who will stress on it and die for sure.  I just keep trying to tell myself through the tears that just maybe tomorrow will be the day they find the cure or at least a targeted therapy for us.   I have seen people who one would think would have died years ago (from various things) and they seem to live forever and then there are the people who look like they would be the picture of health and they die.  I guess we will go when our time on this earth is over regardless of what takes us.   It is hard because cancer consumes me again, but it might not even be cancer that ends my life.   Ok, have to stop this subject or I will be spending the rest of the day crying.   I have CHEMO tomorrow and I so don't want to go............

ALSO WANT TO ADD THAT I AM ON THE SAME WAVE LENGTH AS MANY OF YOU..............I DO NOT TRUST ANY OF THE MEDICAL FIELD....

slowloris

stupidboob. (love that moniker) I really don't know exactly, I'll ask my husband if he remembers how much time lasped. I was talking to a wonderful woman sitting next to me, so perhaps it was an hr. So, about this mystery woman...She oveheard me crying to the technician about my cancer returning 6 wks post rads. she told me she was also TN, stage IV. although she used a cane due to neuropathy, she was alive and continues treatment for 6 years! I believe the 6 yrs was in reference to the stage IV. What a wonderful smile,positive outlook, and warm heart. as I lay in the PET machine, a peace came over me that no matter what the future holds, faith and hope will get me through it.

As far as odds go for life expectancy, with local recurrance of TN, my MO yesterday told me with tx of chemo, 79% 5 yr OS. I think about the victims of the Boston marathon and of the OK tornadoes and  I realize that just because I have cancer, my odds of dying are only relevent to cancer. Other than that, it's a crap shoot - any of us could go at any time for any reason. Look at it this way.. Once we mourn the loss of the experiences we MAY not have in the future, we should then rejoice that we have been given a reminder to live each day the best that we can and enjoy that day to the fullest.

If many people play the powerball lottery thinking they can win with a 1.75 mill/1 chance,(and someone does win), than why do we not expect that we can be that % of people that beat this disease?  Keep the faith.  

Stupidboob

slowloris that is almost my exact thoughts...............:)

that is a great story that you shared with us.   A friend told me yesterday to be thankful that there was still treatment hopeful for us.  Her mom as told she had cancer and she said no way she was going to do any treatment and the doctor looked at her and said that was good she felt that way because there was no treatment for her.    I dread the day they tell me that......:(

as far as the petscan you got lucky if they let you talk to someone.   I had to sit in a complete dark room for an hour and they would not let me even read a book.   I was reading up on the way they do them and they say you are not suppose to talk or anything when getting this radioactive substance because they do not want anything interferring with the distribution of the med.   Kind of wish that they would all get on the same board.  Then again if that were the case we would have no need for second opinions. 

5andcounting

Doing chemo for a local recurrence and keeping your fat intake low boosts you up to the 70th percentile range of disease free survival at 5 years so good grief, don't give up!! Those are good odds.

melissa119

Hi ladies. It's been awhile since I've been here. Just trying to get on with life I guess.

Hope everyone is doing well. So sorry to hear of all the recurrences. That is my ultimate fear that consumes most of my thoughts.

I actually had a question about ca2729. I just had tumor markers checked this week with my mo follow up. The first time she ever did this lab. Anyway. The nurse just called to tell me all labs looked great and were normal and they would see me in 3 months. My market was 24? Why does that seem high to me?? She said no though. Anything under 38 is normal. Why do I feel like after bmx and chemo it should b lower. But I never had it done before so I can't even compare. Any thoughts. What do your markers usually run?

Ugh. Just something else to consume my thoughts!

.

Fiercer

Good evening ladies!



I just returned from my surgeons office. I need to vent a little and understand what went wrong and if my surgeon and I can get back on track.



I was at hospital A before going to hospital B. the plan with my new surgeon was to shrink my tumor before surgery to save the breast. We were going for a lumpectomy. The chemo therapy zapped the cancer. She can't find it by touch or by ultrasound. I will go in for a MRI next week.



When she did the ultra sound she could not find a tumor marker. Turns out that because hospital A did not put one in,she is no longer confident with the lumpectomy option. She wants to do a mastectomy now.



Is the standard of care usually to put in a marker when a biopsy is done?



I am crushed. I know it's just a breast, but its mine and I wanted to avoid a mastectomy. My blood shows I am anemic and now need a transfusion.



I am sooo disappointed!

LynnME

I don't post a lot, but read often. So many reoccurrences and from those who have been doing all the right things. I only had 7 of 8 chemo sessions, because they found what was thought to be a tumor in my heart and I had open heart surgery only to find it was a clot. I didn't have radiation either as no node involvement. I started exercising and watch what I eat, as well as stopped drinking. It will be two years this August and still the fear creeps in often. Tried to get life insurance this weekend and was told I need to wait ten years. I can't get STD or LTD either for at least 5 years. Just when I try to go on there is always a reminder. Sorry to be a bummer, also a friend who was dx with stage IV colon cancer when I was DX with BC lost her battle yesterday.. Cancer really does suck.