Calling all TNs
Comments
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LJ: (((HUGS))) so sorry about the latest...this disease really sucks and it just ticks me off that in this day and age there is no cure. Way to go though on taking charge of your care back and remembering that there is no experation stamp on any of us.
Gator: I am having a similar experience with the neulasta as Titan. It did hurt. The Claritin and Aleve have helped for one of my treatments but not much for the other 2. However, I did get hydrocodone from my doctor that knocks it out an makes it doable. Also like Titan, my counts haven't gone down yet, so it is doing it's job. All this is really scary at first, but once you get through the first one and you know what to expect...it will be easier to handle. Hang in there.
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LauraJane, I am holding you in my heart. Unfortunately, I have never heard anything good about the clinics in Mexico. You have a talent for living each day with joy and in my tiny opinon, that may be your best medicine.
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Thanks to all of you. I've been feeling a little guilty for not wanting to do this trial. My onc explained it could help others. This phase one trial would be the first humans to recieve this drug and they would try and determine dosing and human tolerance. It scares me. She explained that I would have less than a 10% chance of it helping me and basically since I was at the end I would be doing it for others. I selfishly want to preserve my body and make it strong again after all of the chemos I've done, actually I've done them all. That is a nice feeling to know I have tried them all. I've kind of felt like a guinea pig throughout all of this as I am sure many of you have felt the same way. I wish they could come up with a cure. Something simple like a shot in the arm to prevent any of us from ever getting cancer. I will follow up with my plans and I will be checking out the Ayurveda site in New Mexico that Lovely face mentioned. I will try and keep you all posted on my travels and experiences.
Gator and others- I always took 1- Claritin and one Zantac (Heartburn med) 1/2 hour before my shot and did not have the pain that I had experienced prior to knowing about this. I hope it helps. My onc pharmicist suggested taking these and she was right.
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P.S. I get scanned tomorrow, funny but my tumor marker count had gone down. It was determined that the Halovan had stopped working due to new skin lesions and the reoccurance of tumors that had subsided a couple of weeks ago.
I hope you all have a great day. The sun is shining here and life is great. Feel my smiles going out to all of you.
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Hello Laurajane, i don't post often but you are an inspiration. all my smiles are going out to you.
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Laura: I forgot to ask you yesterday if you ever got to see Solomon Wickey? Also, I found an article on him that mentions a couple of other healers in the area: http://www.roundaboutmadison.com/Inside Pages/Archived Articles/2008/03_08HealingHands.htm Big hugs to you!!!
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Laurajane, your attitude and strenght is an inspiration to all, you have helped many woman already please do not feel at all selfish if you choose not to do this trial. Follow your heart, do what is best for you and trust your instincts. We all love you very much and support whatever you decide to do.
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Laurajane do what is best for you and what you are comftorable with. Thanks for your smile I can feel it.
((hugs)) and smiles back at ya!
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LJ - I'm so sorry about this horrible roller coaster you've been on. I will be praying for you. You do exactly what's best for YOU. and don't waste a moment on guilt. (((HUG)))
I stopped by to share some great news and some pain in the gluteus maximus ( that should fly by any censor) news.
Great news- my lymph nodes were negative!!!!!!!
PIA rnews - they didn't get clear enough margins in a couple of spots, so we get to do this again Tuesday. Maybe they'll get rid of the gallon of fluid that's still sloshing around in there!0 -
I am age 39, diagnosed at age 39 1/2, will start 4 AC (every two weeks) on Nov 22nd, next week and 4 T (every 3 weeks), not sure if I'm gonna have lumpectomy or masectomy yet? Anybody else get chemo first then surgery or am I the first?
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naan1004 - I think it's pretty standard for triple negative to do chemo first. That's what I did and there was no evidence of my tumor (or any cancer in any of the nodes) by the time I had my BMX. I had what is called a "complete response" and my tumor was large originally. I highly recommend it. Good luck to you. Feel free to ask me any questions you'd like.
Take care,
Kathy
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Kathy, thanks that's a sigh of relief, and thanks for answering my question, I'll take u up on the offer to ask u questions after my first chemo, i'm sure i'll have lots...
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Naan, from what I have read there is no difference in outcome if chemo is done pre or post surgery. Given your age, you may want to have genetic testing done at some point. I hope it all goes smoothly for you.
Susan
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The only thing I'll add to what mitmuffin said is that with chemo first, the onc can make sure that the tumor is actually responding to it. If it doesn't respond, they can change the drugs. Nice option to have.
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Does anyone experience tender spots under their breasts, the flesh which is on the ribs, on both sides? Are these breast tissues, does anyone know? It is very lumpy and painful to the touch, but if I keep on massaging for several days, they do go away and the tenderness lessens. When I touch it, I can actually feel a few lumps. Please anyone, do send me an answer. This is the third time I am writing and asking people. Am I the only one with this problem? Is this what they call chest wall lumps? But they go away after a while. Does anyone know what kind of glands or veins are there just below our breasts, the flesh which is on the ribs. I currently have it on my right side, the breast which had a biopsy done. I had even asked my Onco. who doesn't seem to have any answers for me. The PA is even worse, she gives me really wrong answers, always contradicting from my experiences or the information on this website. I had a huge lump on my left side a few weeks back, but upon constant massaging, the pain and lump is now gone. Anyone know anything about this, please write, please.
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I did chemo first and when I had my lumpectomy there was nothing there! I had excellent response, so I barely even have a scar from surgery. All my path reports were clear after that and NED. I highly recommend doing chemo first. My tumor was 5cm. and grade 3.
good luck!
lovely face sorry I have no advice for you
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Naan, I had chemo first - I had a 2.5 cm tumor with one palpable node. Following six cycles of chemo, my tumor had shrunk to 2 cm and when they took 16 nodes out 2 were positive. Because I didn't have a complete response, I am doing a clinical trial with an additional four months of chemo. If I had it to do over again I would insist on a MRI or at least an ultrasound halfway through chemo to be sure the chemo was working. Mine felt MUCH smaller and my oncologist thought based on his clinical exam that I had had a complete response to chemo with only scar tissue left. I was incredibly disappointed following surgery, but I still think neoadjuvant is the way to go because you know whether or not it is working.
Lovelyface, I have those pains and small lumpy areas on my ribs- most of them seem to move around. I had a bone scan about a month ago because of it. Mine are mostly on the lower ribs - where the rib joins the cartilage. I think it might have something to do with chemo or Neulasta after effects. Also, I damaged a low rib or cartilage about a month ago in PT when the therapist tried to move me and lifted my rib-something that would not hurt most people- and it is better but still not pain free. I think the whole rib/cartilage area is weakened and fragile. Having said that, if it stays constant, I would get it checked out. The oncologist said if mine doesn't go away we will get an xray to see if I have a cracked rib- the PT said it might take six weeks to heal from the PT incident.
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Lovelyface: I have not experienced what you are explaining but I would get into see the Breast surgeon. When in doubt make the phone call and get in there.
Welcome, Naan. I had a painful lump and had an excisional biopsy, meaning the entire lump was removed and then a biopsy was done. It was 2 cm and TN. I had BMX/AND done 5 weeks later and then Chemo 6 weeks after that. It seems that there are no hard and fast rules. Each Onc follows general guidelines. Hang in there, girl. Come back often and let us know how you are doing. We care.
Navy
Waving at you, LJ. You are an amazing chick
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thanks all for the responses, very helpful
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Lovelyface...have you already had surgery...if so you may be getting cording of the trunk...I have it as well as in both arms and am seeing a PT 2x a week to help. If you are still awaiting surgery than I really do not know what to tell you then call the doc
To LJ--I have followed you since I joined in August. You are an amazing woman full of strength courage and resiliance. You have inspired more that you can know-- more than just me. We are all hugging you know as you step into the next phase of your journey. Big {{{HUGS}}} to you and your family to choose your path. It is your decision to do what comes next. xoxo
Maggie
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All of you ladies who responded to my question - thank you so much. Teka, I am going to research "truncal lymphederma".
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Lovelyface- I am seeing a PT for my lymphedema and I do have truncal lymphedema too on my side, under the arm going in my back too. It's like a pocket of swelling under my skin and it does hurt. It feels like my flesh is tearing or detaching from my skin in there when I move it. When my PT does the massages to drain it, it gets better. I would suggest you see a PT that knows about LE treatments.When I showed my RO my arm that was getting bigger,he told me he didn't think it was LE. BUT IT WAS!!! Now I have it in my arm, hand, truncal, and back. The PT treatments help alot.
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Teka, I always love your short, concise, informative posts!
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Teka..yeah..even it is nothing..and it probably is...we all freak out about bumps and lumps...we do have a reason to freak...if your onc looks at it and you have tests done and it is nothing...fine..it's called peace of mind..nothing wrong with that.
I play the cancer card often and I have no guilt doing it...when I have a mammogram and they say..ok we will call you..I'm like..I don't think so..tell me NOW..I have been through cancer and I honestly cannot wait to hear my results..whether they are good or bad....
There should be no waiting for we BC patients...it's almost cruelty to make us wait for results
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Hi Ladies!!! although I am not triple neg(my best friend is) I am triple Positive, I thought you should know that a member on the triple positive thread went to a symposium where Dr. Slamon was speaking.(He invented Herceptin for us Her 2 + gals) anyways.... she spoke to another oncologist that night whom was a speaker also, and he told her that Triple neg bc gets a "bad rap" but it shouldn't because ... and this is what he said...it can be "cured" (yes, that is the word he used) 80% of the time.
I thought that was wonderful news to hear and my friend will love to hear this too. Also there are going to be new targeted therapies coming out for bc also!!! Great news all around!!! 0 -
Thanks bucky317. Good to hear that some new treatments are coming our way............... 0
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Bucky thanks for taking the time to post this encouraging message for us TN gals!
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Ladies, I have seen almost all of them, not exactly for this problem, but for another lump. And they examined the whole area. I have had many scares since I finished Rads in Mar. It is one thing after another. This particular thing, since it goes away after massage, hasn't been on the top of my list. But now I am going to make an appointment with my RO and BS today. I read up on truncle lymphderma and it seems like that is what I probably have, although my area is different from what they describe. My back/neck has also been hurting, so this is all indicating what you guys are saying. Thank you so much for your input, at least I can relax a little and not have a million scans. I will let them examine me first and see what they say.
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I saw on the Channel 2 Fox news last night (SF Bay Area) that tonight on the 5 pm news, they will talk about a new or differerent approach to treat breast cancer which is happening right here in the Bay Area. I can't wait to hear what they have to say, although I will be very mad if this is just another form of advertsing to highlight an issue which is a huge concern for lots of people, to make people watch their news.
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Quick drive by!
Laura - I sent you a PM, but want you to know you are in my thoughts, sweetie. I really like the idea of Dr. Keith Block's Integrative Center - I've been thinking about doing a consult there myself... but that's about the extent of my alternative knowledge. I hope you find something that works well for YOU, and brings you peace and comfort. Heck, I think the perfect alternative Mexico treatment is beach, ocean, lot's of tequila, and cabana boys
. Check in when you can.Lovelyface - I wish I had better advice for you, I know you've run the gamut with doctors. This does sound like it is related to lymph-issues. I have mild LE, and it can cause me pain and lumpiness. Get yourself to a certified LE PT and they can show you the massage. And using a sleeve helps I find when it is acting up. I hope you find some comfort soon.
It is so nice to see the positive stories - keep them coming ladies!
Titan - oh my gosh, you are 4 months out from 3 years. How amazing - and so dang inspiring! You are the one who brought this group together - it is is fitting that you are right there at the top, every day, bringing us along.
Cancer card? Actually, DH and I have the "not my problem" deck that we use with each other. Every now and then, when he starts bugging me about stuff for down the road - I just throw a card out, "not my problem." LOL. We have a bit of dark humor, it works.
Finally starting to get on the other side of this medication/pain/cough crap again. It is a constant battle to keep the meds right so that I function, but don't feel awful.
Having a great visit with my dad and sister. Very low key, we've been able to do some talking, and even some Boston sight-seeing. My kids love having them here - they don't see them as often as my mom and my DH's parents.
Hope everyone is having a great day!
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