Calling all TNs
Comments
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Friends, what do you all make about this article? It was a surprise to me. I didn't know that circulating tumor cells can be at 0.
This article references a study where 299 people had a 0 for circulating tumor cells. I've never heard anyone post on the boards with a 0, or even with a 1 or even a 2? What do you all think, is he talking about a circulating tumor cell, which is what the Tumor Marker tests identify, circulating cells? I thought everybody carried some cancer cells. How do you get to 0?
UPDATE:
Now I've tried to read more on the internet about what defines an actual circulating tumor cell. They identify it as one that has shed off the primary tumor, which I think would be one that they identify and then would call lymphatic vascular invasion. Is that what you all understand this to maybe mean?
I think circulating tumor cell must be a different thing than a tumor cell burden, which is what is identified in tumor marker tests.
Thanks for your thoughts and opinions!
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Bak - I heard a doc on NPR Sunday - the show was the People's Pharmacy, it was on depression, stress and fatigue. Go check out the podcast.
Kathy - I think it's all a crap shoot. I had T/C when mine came back. Since the Mets I've done carbo/gemzar which worked for three months, now doing xeloda. I hope you find your magic bullet. If only this fc wouldn't become resistant to treatment so quickly. I am so
sorry this is happening to you.
Lovely - I am sticking a pin in my voodoo doll for the unthinking co-worker. She should be limping by noon tomorrow.
Tfosher - I am so sorry for your sister's loss.
Alhusband - I am so sorry that you and your wife are going through this. I think a lot of treatment plans are based on age, general health, node involvement, etc. I hope you the answers you need and that your wife is able to tolerate the treatment well.
Hugs to luv, Annie, dawn,navymom, fighter, Heather and all the old gang.
Good thoughts to all of you just starting the journey.0 -
ALHusband:
I have a manual that is a Physician's Manual for Treatment for Breast Cancer. When I looked through it, each particular diagnosis had various chemo regimens, and I don't remember any one group having only 1 option. Several are usually listed under the Preferred Treatment. I will Private Message you, check your Private Messages and I can send you this manual or give you directions to download it directly off the internet. You will need to use the flow chart in the manual to arrive at the right page for your wife (for instance, you first start with the page of the type of bc she has, then if nodes are involved or not, you click on a link that takes you to a new diagram, etc, and before long you wil be at the recommended treatment page for that exact situation). I hope this will help you.
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TFosher - Extremely sad to hear the update. I wish your sister many well wishes and she tries to heal emotionally and physically as well as take on this treatment. We are all standing with her.
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Lovelyface,
Try not to panic until you see your Onc for a follow-up. A couple of things, I know it may seem silly, but could any of this be the reason for the pain again?
Did you recently buy a new pillow? Did you sleep wrong? Did you move over a coffee table or pull back a couch? Did you try to vacuum under a table, and when the vacuum cleaner was in the down position, you pulled and vacuumed it under the table? Did you lift something unusually heavy, like an extra heavy bag at the grocery store? Did you wear your purse with something really heavy in it one day or for a long period of time one day recently? Did you turn your head while holding something really heavy, causing a strain?
Does it go away with heat? Have you tried a natural anti-inflammatory, such as Arnica?
I kind of think also that Linda has made a good point. A burning pain, can be a nerve pain, or a pulled nerve, or a tendon or pull.
Let us know what goes on .... thinking of you and hoping you get closure soon.
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OBXK - Too funny!
Lovelyface, I see I'm behind on my reading. I'm glad everything is working out and that you had great reports from your Onc's office!!!
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Tfosher - I'm so sorry for all the traumas your sister and your family are experiencing right now. We'll be here anytime. You're a good sister!
Karen - you're one of the wisdom angels who has walked a long path with this. Let's send that magic bullet your way. ((Hug)). I see It hasn't gotten your incredible sense of humor ;-00 -
I finished radiation today...YAY! My skin held up well during this phase. I am happy to have a lot less appointments over the summer. I have one more surgery in july to remove my left breast but active treatment is over. It's been a long 7.5 months. I hope that I can move on and not think about cancer everyday, I don't think I am there yet but I have hope. Thanks for the support ladies. xoxo
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jenjenl...happy dance for you today
tfosher so sorry for you family's pain right now
Maggie
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jenjeni - The memory does fade away slowly and things do get better. Congratulations!
InspiredbyDoice - Thank you so much for caring and taking your time to write and give suggestions. Received with a lot of appreciation, and even if I received your post after my doc appt., still it helps with figuring out what is going on. I am taking into consideration everything, thanks again.
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Doglover - Looking back, I would have skipped the Taxotere. I have had neuropathy in my feet and legs for 2 yrs and it has been awful. I now wear a hydrocodone 10mcg patch so that I can walk. Otherwise, it feels like I have been on my feet for 30 days and nights and can not take one more step, and that is when I wake in the morning. They constantly hurt. (Neuropathy has been observed regularly in patients treated with docetaxel (Hilkens et al 1996; New et al 1996).
My hands are now somewhat like wearing mittens all the time...dexterity is gone, so I no longer can sew, etc. I have an irregular heartbeat, enough to annoy me from time to time, but not bad enough for intervention.
I stopped my treatments after 4 rounds because it was literally killing me. I know others will say they had no reactions, but I felt obligated to share so you have both sides. Please discuss with your onc the common side effects and how skipping T would affect you. Good luck!
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Hi Everyone.....I am Julz4 & have a ?. I was DX with ER & PR negative DCIS grade 2-3. The tumor was 2.8 cm & had 3 spots of micrinvasion. I had a lumpectomy with a SNB. 2 nodes were removed & both were negative. I had 33 rounds of RADS. No chemo. My surgery was last year May 22. So I had my 6 month checkup today. I told the mammo place I was having some issues with pain, itching, & feeling things. Long story short they did extra mammo views & a ultrasound. Nothing new was seen. The lumpy areas look like pockets of fluid maybe....small seroma's (sp). Also maybe a lymph node seen. I Then go over to see my Onc Breast Surgeon as I always do after all mammo checks. He checked again all my concern areas through a palpable exam. He found an inflamed lymph node further up high in the under arm on the same side as BC but not quite where the ultrasound tech scanned. My area of concern was a little below there. My Surgeon is really cautious & is sending me for another ultrasound next Wednesday & I will see the Surgeon again after the ultrasound. I know how nasty this triple neg stuff can be. Has anyone ever had this "CRAP" show up with clear nodes taken out? The way our Family Luck runs in the Toilet is why I think he is checking this out! He told me not to worry as he has NEVER had a node come back positive after a MRI never showed any positive nodes. But I know we all worry it's the nature of our beast to mess with our minds & play with our doubts!
Thanks for letting me spew! Any input would be a help!
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Ruth, I am so sorry you are suffering from the side effects of the Taxotere. Thanks for the warning. Back in January, when I had completed my 4 cycles of A/C chemo, my onc was pressing me to do a course of Taxotere. Having already researched the potentially long-term or even permanent side effects, I refused with the backing of my GP and my internist. Being a diabetic, inviting neuropathy for any reason is dangerous. But more dangerous for me was the potential of foot damage which could start a chain of future amputations. The possibility of permanent hair loss bothered me less.
What also helped make my mind up was that the A/C chemo alone had done such a 'miraculous' (my onc's words) job clobbering the two big solid lumps, why should I risk further treatment with Taxotere, definitely a case of diminishing returns -- all that risk for just a 3mm residual carcinoma which was removed by the surgeon. Had the A/C chemo not been successful, I probably would have gone on to other chemo drugs -- with Taxotere being at the very bottom of the list.
I've just started rads this past week. So far, so good.
Carol
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Tfosher---So sorry to hear of your sister! I am not TN but came accross your post after searching pregnancy in the forums. I was 33 and 6 months pregnant when diagnosed (stage III, 4cm, 0/8 nodes). My daughter (almost 3 now) and I are both healthy now. I know that a dx so early in the pregnancy has some other issues that come along with it. Cancer is scary but I found it especially hard to be sick at the time in your life when you most want to be strong for your new child. I found it easier to deal with myself being sick than to think about my daughter having a sick mother. I'm happy to talk or help in any way I can. I'm fairly well versed in the subject and can send you some information on pregnancy/chemo. Sending support and a hug!
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Hello ladies (and gentelmen). It has taken me over an hour to catch up on posts I was so far behind (end of May). I am doing rads right now and have been so tired every day when I get home I just don't do much -- going into work at 7 every morning working as hard as I can until 2:40 when I have to leave to go to treatments (just eat a quick sandwich at my desk) -- have to drive 40 minutes, get the treatments, then drive back home. It's still better than doing chemo though. My husband drove me today so I'm not feeling quite as tired -- think it's mostly the drive in interstate traffic. I have 15 treatments left. After that I am going to try my best to put all this behind me and just try to get on with my life.
Regarding the Taxol article -- I was thinking we had discussed this back when the article first came out (I posted the link and then felt really bad about it, but it may have been in the weekly taxol forum). Anyway, I did discuss it with my MO. He actually knows the researcher. He told me that I should just know that I had received the best treatment that they knew to give right now. He said that even after the research data, he would still treat TN the same way as he did for me. He also said that if this research does develop into a targeted therapy, he will make sure I get it.
My new avitar is a pic of me my 9 year old granddaughter took this weekend. This is about 4 months of hair growth (started coming in a few weeks after I started Taxol). The eyebrows are mine (haven't had to draw them on the past couple of weeks), and my lashes have gotten long enough to use mascara. My last Taxol treatment was April 11. I still have some neuropathy in my finger tips and fingernail/toenail issues, but really nothing much else. My breast is starting to get red after 20 radiation treatments and I'm getting some spots all over my breast (maybe they are freckles).
Someone mentioned hot flashes. I already had hot flashes before BC and I was able to control them pretty well with an over the counter product called Remifemin (basically Black Cohosh). It didn't totally eliminate them, but it definitely made a difference (it took about a month before it started working). After chemo, though, my hot flashes have started hurting -- feels like something is biting or stinging me all over. Has anyone else experienced this? I did tell my MO and he prescribed a very low dose of an antidepressant. He said it would help the hot flashes and the pain but was not the dose he would give for depression. I took one pill and felt like I had just had chemo. I was so sick I could not go to work the next day. Needless to say I did not take another one. I guess I should call and tell him how it affected me. I think I'd rather have the hurting hot flashes.
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Oh, just remembered this -- there was a discussion about deodorant at one point (I think Stupid Boob started it). When I started my radiation, they gave me a sample of Naturally Fresh. I didn't think I would like it because it is a roll on. I've been pleasantly surprised. Initially I was using it on the radiation side and my regular antiperspirant on the other. But, the Naturally Fresh seemed to be working just as well, so I am using it all the time under both arms.
ALhusband -- sorry to hear about your wife's diagnosis. I'm so glad you are supporting her -- it makes all the difference in the world to have a supportive husband. I'm from Alabama too.
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Doglover201-I had TAC, 6 rounds 3 weeks apart and had very minimal side effects. I am 17 months post my last chemo round and have only very miniscule neuropathy in finger tips and toes.
Lovelyface - it sounds like what you are experiencing is more like SE from chemo?
To all - I keep you all in my thoughts and prayers (for strength to endure, if not for healing )
To husband who loves wife more than life itself - how fortunate your wife is to have a man like you loving and supporting her. I don't know for sure if my husband would use those exact strong words, but I do know that he was an amazing comfort and help to me - tucking me in to bed, preparing foods I could eat, etc. You are a treasure beyond words.
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5thSib - you look great in your photo! I think I missed my eyebrows the most, so I know how happy you don't have to draw them on. I wasn't skilled at it and only seemed to give myself a perpetually surprised look. Sorry the hot flashes are getting to you. They tried effexor (sp?) on me and I couldn't tolerate it. Maybe a fan with a remote in the bedroom if you have them at night?
I'm glad you are nearing the end of the journey. Rest when you need
to and drink some Boost if you don't feel like eating. Take good care...0 -
Ladies- some positive news for a change. Myriad didn't lose the whole battle, but they did get a pretty good kick in the pants
http://abcnews.go.com/m/story?id=19392299&ref=http://community.breastcancer.org/forum/73/topic/8060900 -
Dogs Lover,
Unless you are at risk for cardiac problems I would get the Adriamycin. With triple negative you need to throw everything in the kitchen sink at it.
My MO is one of the experts who has appeared in the Ask the Expert topics on these boards, and he prescribed ACTfor my chemo.
When in doubt call one of the experts on tnbc and get a second opinion.
That's what I'm going to do about a monitoring question.
Good luck with your decision.
Hugs,
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Carol - good point~ I had an excellent response to the 1 neoadjuvant Clinical Trial chemo (strong cocktail-forgot exact formula) and then BMX and negative nodes. When I told my doctors I was done after 3 more, they're like 'no problem'. I mentioned it to a number of other doctors over the next year, and their responses were the same. IF we knew more about our sub-set, we would know when and HOW to go for quality and quantity of life. Right now they are throwing everything they can at it in an effort to 'do their best', and we can't blame them for that. But as we learn more, we can make better decisions.
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Can anyone tell me when, after chemo, radiation will typically begin? Is it immediate or is there a recuperation period of some kind? My wife is 4 treatments into a 12 weekly treatment plan so we have some time yet, but just wondering when her life may return to as close to "normal" as possible.
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I started rads 2-3 weeks after my last chemo.
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Any TN thoughts on Taxol weekly or every 3 weeks? I've had one treatment of the higher dose and put on the every once every 3 weeks version.
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My wife is on weekly Taxol. Seems to be tolerating it REALLY well after 4 treatments. Who knows what she'll be like after more of it...she has 8 more treatments to go...but right now...4 treatments into it...besides the expected hair loss...all is going exceptionally well. Even the doctor has commented on how well she's doing. Her counts, he says, have been exceptional. One oddity, she thought she was in menopause as she hadn't had a period in a few months...but since treatment she has had a menstrual period. Even the doc says it usually works the opposite.
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Oh my, why would your eyebrows be falling out again? And what treatment did you have? I was diagnosed in Nov 2012, had lumpectomy in December, but couldn't start treatment until march so right now I just had # 6 of 12 taxol after the 4 AC and this will be followed by 33 radiation treatments!
So far, I've had very minimal side effects and haven't even had to miss work, but I do get very tired and I've had some stomach issues, but nothing I can't handle!
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Jen-Jen. Doing HAPPY DANCE for you!
DogLover - I would like to second what Ruth said about the neuropathy. While, overall Taxol was mild on me, I did get awful foot neuropathy. (Luckier than Ruth, not in hands). By the end of treatment, it was like trying to walk on hot burning glass. It has improved since treatment, but both my feet are numb now. It is not overly distressing for me, because my right foot have been numb off and on for many years. Now I just have a matching pair. I'm sure it's much harder for people to adjust to when it's a brand new symptom ;-)
Julz - I want to give you an honest answer,
but I also don't want to scare you with inaccurate information. What happened to me may not pertain to you. I can't tell from your question exactly at what level your node is. (If I had to use the magic ball guess method, I would guess if it's palpable on exam...it's a Level l node)
At DX I had 0/2 nodes and no nodes seen on MRI's (I don't know how much of the lymph node chain the MRI views. Maybe somebody can answer that.). In January the found nodes "high in the axilla region" on a CAT. They were Level II nodes and were not palable on exam. (They were underneath the pectoral muscle) I just had my ALND about 2 weeks ago and I had 3/9 nodes positive. PLEASE REMEMBER, it depends on the Level, and this may not be the same for your situation!
5thSib - you look great and your almost at the finish line.
Peggy - you've stumped me. How do you find "ask an expert" on here? I did a search and got nothing. I could use an expert right now.
Joyce - Taxol in some version of a dosing schedule is one of the standard first line treatments for this disease.
ALhusband- I had TAC. Taxol was the easier of that combo. Neuropathy in the hands and feet can be a problem to watch for.0 -
ALHusband: Weekly taxol has been shown to be more effective than triweekly: http://www.breastcancer.org/research-news/20080417c The theory is that you are hitting the cancer on a more metronomic basis. The weekly dosages are each weaker than than triweekly doses, hence the number... for me and many women I've met here, the weekly schedule is mostly very tolerable.
I am not aware of any study results comparing weekly with biweekly (which is a common scheduling cycle).
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I started rads 4 weeks after chemo was done. Took a trip in between.
I had taxol every 2 wks first for 4 tx then AC every 2 wks
Maggie
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I also had 12 weekly Taxols...I found they were very easy to tolerate PLUS my hair started to grow back during treatment. I have a bit of lingering neuropathy in my toes...no pain, just a bit of numbness.
I started my rads 3 weeks after my last Taxol. For me, they were the easiest of all the treatments!
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