Calling all TNs
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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.
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Thanks Painting. I hear you, although my posts might have said more than it is. I guess irritation with this disease, the frustrations etc. were what I was trying to relay. It truly is an ugly disease which no one understands, and it can be irritating for the person who suffers from it in their daily lives. I appreciate everyone's help in this matter, but really, it is not like I cannot function. I have never been diagnosed or anything like that with social anxiety. It is just normal feelings during and after this disease. I don't have anxiety related any symptoms, but yes, I am mad that people don't understand this and say things or do things. I am not suffering and go to work daily, have meetings, and meet with my immediate family without any problems. My posts probably sounded really bad, only because I was really mad last night. Sometimes I feel that I should be treated with more love and compassion than what my family is giving me. I appreciate your reading my posts and trying to help me.
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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!!
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So I got the call - my PET scan is scheduled for May 11th. Has anyone had a clean PET after an elevated CA 27.29. I know that test gives false positives, so I'd feel better if someone has been there - done that and all was OK.
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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 level0 -
wow so many posts I cannot keep up!
I just want to say I think of you all daily and I pray that everyone is ok. We all have our bad days I know.
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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?
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Thanks, Heather. My MO runs a complete metabolic panel on me every three months, and my liver and kidney labs were perfect. Also, because I am diabetic, I take a small dose of a blood pressure med to prevent kidney damage. I could wish...
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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.
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Merrinell, have u had Neulasta or Lukiene shots, they help boost White count to prevent being neutropenic. If u haven't ask your MO about them, so you don't have unnecessary delays on your treatments. Good luck and hope your counts improve soon, if u have have fever, get chills, sore throat, or just don't feel well, call your MO.
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When do you get the tumor markers taken? I don't think I've ever had a test for that.
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Onvacation - it depends on your oncologist. My first MO did them every three months, and my Dana Farber MO does them every time she does labs, which is every three months at this stage. But many MOs don't do them at all unless you are Stage IV. My history is making everyone extremely cautious. I went from Stage 1 with clear sentinel nodes to Stage 3B while being checked almost monthly by my first MO!
Lovelyface - I am jealous of your tumor markers...lol! I would not worry at all if mine were that low!
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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.
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Hi Maureen,(MB 1024)
Yes, stress has been high but I had worse stress times so, dunno.
This forum has been a wealth of info for me. For that, my gratitude to all who post! Thank you
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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.
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Hello everybody. Took me a bit to catch up. This is one very busy thread. Hello to the newbies. Also sending hugs and good wishes for those in need. And to you gals who are just getting started on this journey, sending some encouragement your way. You can do this. It aint fun and it aint pretty but things will get better. We are here to help in any way we can.
On the discussion of tumor markers. My Onc does them every 6mo. I don't have my results from my appt on April 23rd yet.
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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.
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How nice to 'catch up' with everyone. Lovelyface, I had Post Traumatic Stress from the surgery and chemo. I saw someone about 10 times and it did help. I liked crying and ranting and not having to be strong. I think it just takes time to settle down from the trauma. Ihope you feel better soon. I am so proud of everyone doing treatment. I know how hard it is. Few people know just how bad the treatments really are. But they do end and life goes on.
I am angry I have to be strong tomorrow by myself. I have been shaking all day, making mistakes at work and crying. I thought I was getting fired today and when my boss called me into her office (to wish me luck on the test), I burst into tears. I may need to take a few days off.... I'm having the nuclear bone scan cuz a sclerotic lesion showed up in my pelvis after a month of horrible pain and an abnormal mri. Its an injection, then 2 1/2 hrs of waiting and then the scan. There isn't anyone to go with me and sit for hours on end. I'm scared and mad. This isn't fair??? I'll get the results by phone Friday am, and I am staying home to get the news so I don't have any drama at work (like last time). I talked my next door neighbor in to having breakfast with me and to hold my hand. 5 years ago my sister had the same thing, lit up like a christmas tree and was gone in 6 months. Boy, I'm so scared I started a bucket list, lol. Watch me win theFlorida lottery tonight!!
I planned on talking about everyone's progress but have turned this into a pity party. I'm sorry. I'll keep you posted and please keep ME posted. Thinking of each of you~
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Oh Ruth, I wish I could be there to go with you.
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(((((Ruth)))))
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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!
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Ruth, wow, that is so harsh
Wish you had support for this. Big hug to you.
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Ruth sending you a BIG HUG and will be thinking of you. I'm glad you neighbor will go to breakfast with you before.
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Ruth! we will be there with you on Friday! We know exactly what you are going through..hang in there! just think about us thinking about you ok???
Lovelyface...know where you are coming from.....it's hard to adjust to "life" after treatment isn't it...
A friend of mine's friend was just diagnosed stage 3...I offered to help her out by just talking to her...and I want to do that....not sure if I'm going to be a good mentor but I will try....sometimes it is hard to bring it up all over again..do you know what I mean...I want to help..of course I do..
Merri..you take cytoxan pills? instead of an infusion...wow..how cool is that?
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Oh Ruth! I am holding you in my heart and hoping for the best possible news. I'll be thinking of you tomorrow and from the moment I wake up on Friday.
Titan, I do know what you mean about bringing it up again. You have journeyed on now.
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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
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(((( RUTH)))
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Ruth - you have a host of cyber-sisters right by your side. (((Hugs)))
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Ruth, thinking of you and wishing for nothing to light up. ((((((((hugs)))))))))
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Ruth, I'm so sorry you're going through this! I hope all is well!
Lovely - from experience, I can tell you the more you isolate, the worse it becomes. I am now an example of better living through chemicals. Zoloft and Ativan.
Naan - I think swimming would dry your skin out too much. I would even avoid shampoo or soap on that area when I was in rads.
Hugs to those of you in treatment.
My best thing... TV went out in a wild storm this evening, so I was able to talk my 12 year old son, into playing the board game Sorry! Tomorrow I will be 51. Last year I had chemo on my birthday, things are looking up!!!!0
