Calling all TNs

Thanks Ladies for your comments, I really do feel lke this is my home where you guys will understand.  So much happens each day and I interpret them this way, maybe my interpretation is wrong and that is why I have social anxiety now. One of my best friends who loved me stopped calling me ever since I told her my diagnosis.  No more contacts, phone calls nothing.  Last week, my boss asked me to teach this other guy my job, I was shocked?  I have been having too many doc appointments, so maybe he thinks that something is wrong again.  I was the one who had previously suggested to him to have a backup for one of the programs I work with only because it is a "live" program and cannot be stopped in case of my absence.  Instead he decided that someone should learn my whole job.  I asked him whether other staff at the agency had backups?  I know for sure that nobody in this agency has backups, not one, I have been here 12 years.  I asked him, what if one of the staff just never showed up the next morning, as that is possible for any one of us, he had no answer.  He probably thinks that I am going to die.  Or if I am in the coffee room, and if there is a general conversation about sugar, one person remarked to me, yes, this is reeaaaly bad for you, don't even think of using it.  All this has become a daily occurance around me, whereas I was the healthy salad eater, runner at lunch, and advisor on herbs.  And now this.  My cousin called me last night to tell me she is coming and started crying on the phone.  My God!   What the heck?  I just want to say to them, leave me alone, I am dealing with it and am doing just fine.  What I am also trying to say is that I have grown so much due to this experience, that I find small talk and meaningless laughter irritating these days.  I just have sort of lost my tolerance for unmeaningful conversations, etc. And I know this visit is all about who looks good and who doesn't, how fit someone is and the clothes, outfits, etc. I have lost all tolerance for such things. Someone once said that the cancer experience made them into a much better person, and opened their eyes to a higher level of living. I agree with that person. However, it is difficult to grow alone, we have to mix with society, small talk and take part in meaningless conversations. I will be okay, thanks ladies.

Went to infusion lab yesterday for the first infusion of my 28-day CMF treatment (MF by infusion, Cytoxan with pills for 1st thru 14th days), and my the Absolute Neutrophil Count was bottomed out so I couldn't take the treatment.  This is my first experience with the ANC count. The thing is:  I feel so good beginning the 18th day of my treatment.  No more Cytoxan pills, the chemo is over for the month...and I can look at food again, the queasiness is gone.  Then this happens.  Just sets me back a week, and the MO is going to cut back the Cytoxan to 100mg instead of 150mg a day, so maybe I'll be less queasy, and my days of feeling better will be more! 

 We headed up to the mountains on my 19th day, and it was so wonderful to get up there and get opened up for the summer.  My plans are to head up there after the next three (and last, I hope) cycles and spend as much time as I can until I have to come back for treatments.  Once I start RADS, there will be no trips up there for six weeks.

I have my first mammogram on the other breast this Friday.  Don't understand how any cancer can live in my body while I'm taking chemo, but I'm just praying everything will be okay.

Lovely, I totally get you! I don't want peeps to feel sorry for me.. it's true love and support I am seeking. I have several family members and what I thought were friends that have backed away. More power to them! Maybe they are scared of the possibility of losing me.. whatever it may be, suck it up buttercup. TREAT ME THE SAME AS BEFORE OCT 10TH 2011!!

Michele,

Just found this on google.  I know that you are diabetic, maybe your markers are just going up due to your kidneys? 

a normal CA 27.29 level is usually less than 38 to 40 U/ml (units/milliliter), depending on where the lab test is done
because anything under 40 is considered normal, you shouldn't worry if it's 20 one time and then 30 another time
just because the test result is higher than 40 it doesn't mean your cancer has spread. Endometriosis, ovarian cysts, first-trimester pregnancy, benign breast disease, and kidney and liver disease are just some of the noncancerous conditions that can raise your CA 27.29 level

Free camp for kids ages 6-16 yrs old, if u r interested for summer, the UCLA sponsored one still has space other states and locations check online search camp kesem or for UCLA camp contact via email mailto:ucla@campkesem.org. I signed up my girls ages 6 and 9, it's a special camp for kids touched by cancer, they provide fun and counseling for kids to help them deal with their sick parents. Had treatment 9/12, surgery rescheduled for 6/8, then radiatio. Can u swim during radiation?

LuvRing - I did not have a PetScan so can't imagine how frightening it must be to get that done after a rise in this tumor marker, however, it can rise due to various reasons.  From 6/21/11 till now,  my CA 27.29 numbers have been 9.2, 7.6, 11.6 and then after a breast biopsy, it raised to 17.2, however, while it was still within the normal range, it was higher, much higher than 7.6 (at least 60% higher).  But this very last time in April, 2012, it is now down to 9.2 again.  I got so very relieved.  I hope your rise in the number is also caused by some chemistry type issue rather than that.

When do you get the tumor markers taken?  I don't think I've ever had a test for that.

Lovelyface - I hope you are feeling better.  I, too, suggest you might want to consider talking to someone and your GP can help locate the right resource.  I saw someone when my dad was dying and it really helped. I also saw someone a few times after my diagnosis to help me adjust to the "new normal" before I returned to work and it helped immensely. 

Lovelyface,

As all who have suggested, a therapist can be a huge help. I met one at the Cancer Society and  I

assured her I will not hesitate to call. We need all the support we can get. 

Merinell..my taxotere and cytoxin were cut back during treatment and 2 oncologists, one at Mass General and one at a Harvard teaching hospital told me it would still be enough to do the job as it was killing so much stuff in my body it would get the errant cells. I went from 100% to 75% to 85% to 90%...Made me worried but it is now 7 months since I finished chemo and I think that I just have to trust that it was enough. My tumor markers are low, my onc is happy and I go for a tomographic mammogram on May 15th....I am hoping and praying that will be normal. And I will have annual bilateral breast MRI's. And wishing the same for you.

I get tumor markers done every 6 months.

big hugs to everybody.

Oh Ruth, I wish I could be there to go with you.

mr dr told me she would do my tumor markers at 1 year after chemo.

ruth I wish I was in Orlando I sure would go with you!  I know how scary that is.  good luck! 

Ruth sending you a BIG HUG and will be thinking of you.  I'm glad you neighbor will go to breakfast with you before.  

Lovelyface,

You're one of the true-blue 2010 oldies on this thread.

However, cyberspace doesn't take the place of an off-line kind listener.

I just got home from a mini-vacation with daughter and niece in Vermont.   Thankfully, niece told me to stop talking about dying from TNBC.   I was overdue a different mind-set.

Ruth:

About a year and a half ago, my regular gyno found a small amount of fluid in my pelvis while doing my yearly pelvic US to check my fibroids.  Due to my age, there should be no fluid there at all.  Of course, the freaking BC starts off a chain of testing and all the ensuing anxiety that each test brings with it. Rather than continue with the pelvic US for more than the year and a half I went thru them (every 3 months and nothing changed), this past January,I took it upon myself to tell my gyno that I was going to see a gyno/onc to find out once and for all what the hell was going on. He did his own testing (pelvic MRI and US) and told me it was nothing at all and not to worry about it.  It was a tiny water filled cyst on my adnexum (area between ovary and uterus).  BUT - to make sure nothing else was wrong, he wanted a CT of abdomen/pelvis.  I sweated that one out to find out everything looked good, but again, due to the damn BC history, radiologist saw a small sclerotic lesion on the pedicle of my T12 vertebrae and, although with my age being what it is, it was probably just degenerative wear and tear, he felt I should have a bone scan.  Now I am reeling from all this testing (which I hate with a passion and avoid at all costs).  Sweated the bone scan out - and it showed nothing at all.  Just the arthitis I had in my ankles and knees on my diagnostic bone scan prior to chemo.  Both the gyno/onc and my regular onc were never worried about it being a met and made sure to remind me of that upon getting my bone scan results. I have had pain in that area of my lower spine for years whenever I either moved furniture, or shopped all day and was on my feet for hrs. or more, but when I would sit or lay down it would go away.  Not pain, but a dull ache.  Just wanted to wish you good luck with your testing and hope that your's turns out as mine did.  Of course, if I am 100% honest with you, even though I don't get the dull ache every day, when I do get it, I do still get scared and hope that that the bone scan was truly accurate!!!

I hate this effing disease with all my being.  Good luck to you, will be thinking of you and holding you close to my heart.  I too had to do all my testing scans alone as well, not pleasant, but it is what it is. 

Linda