Calling all TNs
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OMG, I think that is MY husband's nekked butt near that supposed oceanscape! Well maybe, but then again, I am on a helluva lot of drugs these days....
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English and Luah, if you are getting chemo, please check with your MO before adding asprin. Mine took me off of it for the duration and I only took a chewable baby asprin on M/W/F. It has to do with bleeding.0
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As Pinky says, my MO also told me not to take aspirin at all during my chemo.
Bernie, thank you for your kind words of comfort. xo Yes please, I would like to join the FB group if you could send me the info. Thanks.
So my latest good news is I have organized a series of gentle yoga and pilates classes suitable for breast cancer patients and survivors. I was trying, without success, to find something to meet my needs. I was also terrified of being the weak and tired one in the class, who can't use my right arm much, wears an elastic sleeve, is missing a breast, is bald etc. Then I got the idea of creating low cost or free classes where every one is in the same boat, the instructors are versed in appropriate exercise for cancer patients, and no one feels like they have to wear a prosthetic to exercise.
I now have enlisted a fantastic group of qualified and experienced teachers who are meeting to share and research information for teaching cancer patients, and some more advanced classes for survivors. I am making some headway on local hotels donating venues for the classes. I also have an amazing and experienced fundraiser who is organizing and hosting a benefit to help fund this venture. All of the teachers are generously giving their services at a discount or in some cases for free, so I will be able to offer these classes at a low cost or no cost to those who are financially strapped. I am really excited and this has lifted my spirits so much!
The bad news is I am receiving even more media requests now and have actually agreed to do my first radio interview, yikes. Pretty freaked out by this- good thing I have a large stash of strong anti-nausea meds at my disposal.
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Karen I will look forward to seeing your old fellars botty!!! Love the bed, looks so comfy. Was it you who went a peach color when you dyed your hair. I have never dyed mine and its red. I was wondering what sort of color I would come out like if I dyed it silver. Wishing you a great day and weekend with minimum stress and I hope your boys make you laugh.
DesertMama what was your hubby doing at the beach without you!!!
Lory I wish our doctors were like yours and we didn't have to stress and wait for results. Would make it so much easier on us.
Can anyone tell me what are normal tumour markers and what are high. I am to have the first of mine next week when I see my breast surgeon. Annie
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I am heartbroken, just found out about Marybe. Somehow I had missed that she had died last month. She was such a special person, I always loved seeing pictures of her bright smile! She was in my May 2011 chemo group, she always worried about scaring the lower stage gals as she was stage 4. I always told her she was such a positive influence for everyone and always begged her to keep posting there. LuvRVing-I love the thread you started for her on the stage 4 boards. She will be missed and never forgotten.
CS-All I know is the ca 27.29 markers 0-38 is normal. My last number was 34.6. Pretty scary, as the time before they were 27, that was the lowest mine have been, they seem to bounce around. The highest mine were when I was first diagnosed, they were in the upper 50's or low 60's. I forget, but I have it printed somewhere. I am in one of those moods, anxious, worried and sad. Sometimes I think I am sticking my head in the sand and trying to live as normally as possible. But I guess what else is one to do?
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I'm not taking aspirin at the moment--I was planning to start that after the chemo, maybe. The oncologist said me that he couldn't medically recommend it but he wouldn't tell me not to do it. So, I said, hypothetically, if I were to take it, how much should I take etc. and he said, hypothetically, if I were to advise you, I might suggest this...
rachelvk: I'll check out the Taxotere boards on here. I'm definitely going to do the icing. I'm told that Taxotere is worse for most people than the AC or FEC treatments. I've found the FEC a bit unpleasant but do-able. Hoping I'll be able to tolerate the Tax equally as well. Mind over matter...
NavyMom: Yup, that about sums it up, although I don't think I will stop before I get to psychopath. It might be a case of straight jacket and isolation for me!
Inmate: have a great weekend.
OBXK: Hope you're doing OK.
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Karen-- Sending you big hug. I'm thinking of you.
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Desertmama- Kuddos to you!! What a great idea you had, and way to push it through! Congrats on the interview! Bringing a voice and a solution to those of us needing this kind of assistance.
Cocker- I have not had a petscan, so I a not sure if there is a wait for that here. Every other scan- bone, mri, mammo, ulrasound I have been told right away what the results were. I just can't imagine the anxiety involved with waiting to "hear". The anxiety leading up to the scans are bad enough.
OBXK- I love that bed!! How nice that would have been after surgery. Sure would have beat sleeping in the recliner.
English- I learned about icing after my first round of Tax, then marched in and requested ice for my hands- never thought of my feet..
lost 2 1/2 of my toenails. It was doable.. 
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Desertmama - What a wonderful idea. My pilates platform helped me so much, when it came to getting the ROM in my arms back, plus gentle toning. Well done you!
Annie - I'd say what ever color you choose - leave it on for 45 minutes. I don't think I left mine on long enough.
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Should have clarified - I only starting taking baby aspirin after my treatment was done. It's also believed to have protective effects for the heart. For sure, best to check with MO on taking anything while on chemo.
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On the aspirin question - I took baby aspirin throughout tx. My MO never mentioned anything about it.
DesertMama - what an awesome thing you're doing and what a benefit for you and the women who join you!
Has anyone had a CA15-3 marker test?
TGIF!
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I love it . that is the first gokd belly laugh I have had since my diagnosis! In need to pin that. Thanks!
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Inmate...hi enjoy the beach...going to look at the water soon.
journey4life...I get them every 6 months. MGH protocol but with caveat it is not a very accurate tool. Hate if the numbers inch up.
My daughter went to William and Mary.
Just rode our ride on lawn mower for the first time, when no one was home and cut the lawn. No fear about that. Will my husband be surprised when I come home tonight.
Making cranky birds. A hoot.
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Susan - love the birds. Kudos on the lawn work.
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Just a really quick note to say my CAT scan showed that I am stable and I get to continue on the trial drug for 8 more weeks. The logistics today at Dana Farber were not good...I'll explain tomorrow when I have more time.
Hugs to all!
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Woo hoo LuvRVing! Stable is good. Sorry to hear about poor logistics, I hope it all worked out ok.
Painting-as always, nice work! I like cranky birds. I have a few around here...
Still feeling anxious, I am sure it is because of my upcoming surgery. 1 week from Monday. Soon I will have no ovaries, I have actually wanted them out for a long time as my mom died from ovarian cancer. October is always a rough month, the month that my mom died and all the reminders around for awareness. Other than that I love this time of year. The weather has been sooo nice here in Seattle. I can't remember the last time it rained, I think it was at night!
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Luv RV - Fantastic news on being stable, but confused about logistics? Hope that trial is kicking ass.
Thinking of you!
Heather
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Hi, I am new here. Found lump myself in late July, mammo/sono Sept. 17, left lymphoscintigraphy/two negative nodes removed and lumpectomy on 9/27. No preliminary biopsy but TN not unexpected since tumor was estimated 2 cm on 9/17 and was 4.7 cm by surgery. I am 66, an RN and professor of nursing at the local community college. Was working on my doctoral comp exams when the tn showed up. I have metabolic syndrome (diabetes, high lipids and cholesterol, and hypertension). I've been reading the research and found that propranolol is helpful in TN, so had my NP write a prescription. I've also requested concurrent chemo/rads. Hope to start in a few weeks, but first we have to wait for the tumor board to meet.
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Painting - love the birds. What is the normal range for CA15-3? I think my blood draw is next week but won't get the results until I meet with MO on the 17th.
S1ssy - welcome! You'll find excellent information and support here.
Quick story - I work with a woman who recently had plastic surgery to remove her neck waddle (sp?) and to pull some of her facial skin tighter. She was complaining about a dime-sized spot of numbness and some stiffness in her neck. She also mentioned an area around her neck that has been hypersensitive. I tried really, really hard to muster some sympathy for her...couldn't do it. I had to bite my tongue!
Luv - great news!
Bak - I'm scheduled for an ooph on 11/20. I'm not anxious yet other than wondering whether cancer has already started there. I can't wait to have them out - and a double bonus, the TEs are coming out too! What date is your surgery?
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S1SSS - Welcome to this band of sisters who truly care for each other. I'm sorry you need to be here. About a year before I was diagnosed to took propranolol for tremors. My BP went too low, so stopped. I've never heard any thing about it for TN. I'll be watching you see what it does for you. May I ask where you get your CA care? I'm in Central California and am so frustrated with my cancer center. If I ever have to have more treatment I decided I'd go to UCLA. I hope you have been able to keep up with comp exams. Best wishes as you go forward with your treatments. Keep in touch. You'll find a lot of help and comfort here. Jan
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OK, so as Paul Harvey used to say, "and now, for the rest of the story"...
We got to Dana Farber at 8:35 - the drive in was quick and easy from my friend's house in Milton, MA, and she came with me so I'd have company. We go up to the 9th floor of the Cancer Center building (which I'll call the Yawkey) to check in and have labs drawn. Well, we sit there for a while then they call me to tell me that 1) the nurse is late and 2) they don't have the lab orders. And I had to be at Radiology (the lower level of the Dana building next door) at 9:20 to pick up the contrast drinks. So we trudged off to Radiology, checked in there, waited a little, got the contrast drinks, then headed back to the 9th floor of Yawkey. Got the labs done, I'm drinking my cocktails, and we head back again to Radiology to await my CAT scan, which was scheduled for 10:50. They take me at about 11:15, do the CAT scan, then we head back up to Yawkey 9 for my Noon appointment with my doc.
Just one little thing someone forgot...that scan has to be read and someone has to generate a report. And I'm probably not the most important patient waiting for results. So we wait, and we wait, and wait some more. At 1:15 the clinical trial nurse comes out and tells us it could be another 1 - 1.5 hours before the scan report was ready, so we should go get some lunch. Well, that's fine except we had figured to be out of there by then and had a lunch date with a friend who works at BU Med Center. So we cancelled her, went to the DF cafeteria and grabbed lunch. We returned back to Yawkey 9 about 2:45. And we waited, and we waited, and we waited some more. At about 4:15 after seeing the waiting room empty out twice, someone said, "we haven't forgotten about you." Finally, at 4:45, the clinical nurse came out, she had the report and told me I was stable so I'd be able to continue on the clinical trial drug. So they took me back to the exam room, took care of that business, then I had to go down to the pharmacy and get my drugs, and then go down and claim my car. In the meantime, my friend decided she'd take public transportation back to Milton so I wouldn't have to fight the insane traffic going back then drive to Acton, where I was heading to go out with my daughter.
So I left DF at about 5:20 and drove to Acton. The traffic was insane - commuter traffic time on a holiday weekend. I got to my daughter's at about 6:45. And the good news was that I had ignored the advice of my friend to take the Mass Pike. Turns out there was a 45 minute delay on that route. By the time I arrived, I was tired, hungry and cranky...but stable!
And I get to stay on the trial drug for at least 9 more weeks! My next scan will be in 8 weeks and I'll go back a week later for the doctor appointment. This same day stuff is not a good idea. They did it because they knew I was leaving Sunday and I needed more of the drugs before I left. But I should have suggested that I have the scan on Thursday. I would rather have gone two days in a row than be stuck there the whole day.
But, it's all good because I'm stable.
S1SSY - I have had diabetes for 11 years and underwent DD AC/T last summer. The steroids can be a huge challenge for maintaining control of your glucose. But it is possible (I did this) to take a small dose of steroids (5 mg) on treatment day ONLY and use other drugs to control side effects. Feel free to PM me if you would like some details.
OK ladies, the plane leaves tomorrow around 1 p.m. for LA, and then we leave on Thursday for Hawaii. So....ALOHA!!!
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LuvRVing - sounds like a long and drawn out day. Now you can go and enjoy your wonderful holiday. ALOHA!!!
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Luv - Congratulations on being stable! I was feeling exhausted at the events of your day, wow! you persevered.
Bak - Lots of good wishes on your upcoming ovarian surgery. I had read a prior post of yours, my dad's birthday fell on your mom's anniversary date of Oct. 3rd (I think it was your post). My dad died as well, so when you wrote about your mom, I was also sad on that day.
Sissy - So sorry you have to join us. Yes, it is shocking how quickly TN grows. Good luck with the results of the tumor board.
Journey - Good wishes on your surgery as well. I can imagine the anxiety.
Dawn - Good to hear you are going to the beach, enjoying yourself. Water is very healing.
I am a little anxious this weekend. Have had a headache behind my eyes for so many weeks. Feel a lumpy (cancer side) breast for the last couple days. But I just had my tumor markers and they were really very low. Also had a brain MRI in April 2012, which was good, there was nothing to suggest anything. I am hoping rather than going for another round of check-ups, just to relax and hope all these are just passing clouds. Could a tumor come up in the brain just in 5 months after the MRI?
Ladies, see how I have issues after scans? Brain MRI in April, headache in August. I am very sensitive.
I have a 3 day weekend, we have Columbus day off on Monday. Yea!!!!! planning to relax. Can't drive around here much, there are a million events in San Francisco this weekend, traffic is supposed to be a nightmare. So I am staying in doors, can't get stuck in traffic.
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Luv - safe travels and enjoy yourself! Be sure to share pics when you get back.
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Happy Holidays Michelle.
Lovely... sorry to hear about your anxiety. Does that ever go away i wonder. Hope you can find some happy this weekend.
To all US Sisters - enjoy your Monday off
To all Canadian Sisters - enjoy your Monday off.
And if you are not fortunate enough to have Monday off... hope you can enjoy it anyway.
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Hi, Jan69, thank you for the welcome. I am hoping the propranolol will help. If nothing else, it should bring down my blood pressure which has been out of control since I found the lump.
I am in Eureka, about 6 hours north of the Bay Area and 6 hours south of Portland. So I am using the local services. I think it is probably fortunate that I know most everyone in the healthcare community here and they are very willing to work with me. My NP plans to order a PET scan asap, since I've lost a lot of weight in spite of the clear nodes. I have put off my comps for at least one semester. Just can't concentrate right now.
UCLA would be an excellent choice for care. I know the central coast is somewhat limited (although I suspect we are even worse up here behind the "Redwood Curtain."
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LuvRVing, I have been wondering how in the world we diabetics could handle steroids. My provider wouldn't even give me any when I had a massive allergic reaction and my throat swelled for three days. Thank you for the info, and I will get back to you for more input. BTW, are you on Glucophage? That's my only med for my DM, and I see it too is being studied for use in TN control.
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S1SSY - yes, I take glucophage (metformin) - 2000 mg daily. There are many clinical trials within the breast cancer research community using metformin in various scenarios, for all hormone statuses. The beauty is that it can include TNs.
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Aloha Luv! I hope you have a wonderful exciting restful relaxing debauched whatever you need it to be holiday in Hawaii!!
Painting, wow I really love your cranky birds!
Hi S1ssy, sorry/happy you are here with us.
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Hello Bak94,
Just popping in to say that I hope all goes well with your surgery on Monday October 15th.I know you have been waiting for it for a long time.
Best Wishes, Sylvia.
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