Calling all TNs
Comments
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I have a question about massaging the chest area after a mastectomy. I knew from a book by Dr. Northrup that it was not good to massage the breast or the arm if you had breast cancer. Well, after my mastectomy I was told to massage the area. I did this faithfully for the whole 2 years and now my cancer is back and up to the collar bone. My MO says that she sees no reason why if it feels better I should not continue to do the massage.
Any of you have any experience with this?
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Susan please keep us informed. There are a few of us that have had recurrences and are all huddle up on the couch together. We will scoot over and let you on if need be but we sure hope and pray there is no need.
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Stupidboob...thanks so much. I am going to see if it fades. I was mwoing the lawn on Sunday with a ride on tractor and remember gripping the wheel really tightly as I had never done it before. My right arm has been sore ever since but maybe I never looked at my breast and I bruised it them. I am going to watch it over the weekendand see if it resolves. It looks a bit like bruising after my lumpectomy but only much leass and more diffuse.
Say a prayer out there in the universe if you can.
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Prayers have been said..............:)
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Jcolford...yes! I finished treatment end of December and had double MX in January. I have leg pain just like I did when I was on Taxol. Sometimes, I walk like a little old lady. They say that this pain and the fatigue I am having will last at least a year. I started acupuncture and that has really helped with the leg pain. She told me that our nerves were damaged by the chemo and they are trying to regenerate. I also have been walking 30-40 minuted 5x a week. When I am consistent with walking and the acupuncture, I feel much better. I have not experienced any weakness or pain in my arms. At first, I did under my arm where the nodes were taken out and sometimes I will have sharp pain in my upper arm. I massage it and that helps! It's just a long road for us! One that I don't like being on! Hope I was able to help!
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Thanks Hopex3,
My onc was very thorough about side effects during treatment but never discussed how long they would last post treatment. My last appointment with my onc was February and I don't see them until December. Needless to say I feel a bit abandoned. Thank goodness for my GP but he even admits that he is not as familiar with taxol side effects. At least he is willing to talk to my onc on my behalf. Thank you for your response. I lurk her often but rarely post. This site has been a wonderful resource for me since diagnosis.0 -
Regbeach, my MO said to take Claritan or Zyrtec. I chose Zyrtec since my son uses it. He said to start taking it on the morning of the shot and to take it twice a day for 5 days. I did that faithfully and never had any bone pain from the shot.
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jcolford I did not chime in because I have so many other issues with pain going on but I can tell you that 2 years out and my fingers were still numb. They only hurt once in awhile but stayed numb. Now, doing chemo again they are getting worse everyday. I hurt like Hell on Taxol for days afterwards and then I would feel better but whether or not some of my pain I have today is stil related I don't know. There are so many side-effects from chemo that do not even rear their ugly little heads until years after we have been off of it. I do hope you get some relief
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Did any of you who took Taxotere have breathlessness?
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Good morning Ladies,
I haven't had time to read through the posts and hope everyone is doing well today. I have some good news. My tumors will be genome tested next week to customize any future treatment options. As I was running out of choices I am so very excited at this opportunity.
Gotta go, but will update everyone when I know more.
Have a wonderful day ladies. Love to you all.
d
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Inmate - that's great.
To jump on the good news wagon my bone scan came back clear, which is awesome but I wish I knew why my lower left pelvis hurt. Dr. thinks it's muscular.
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Jcolford:I did TAC for 6 treatments. I had joint pain for about a year after tx. I did not have any neuropathy during or after tx but the hip, knees and feet hurt like hell. I tried to stay active through this time....walking, yoga and strength training. I am 3 1/2 yrs from last tx and now the stiffness I get is just the fact that i am that much older now.
Cheers for those with good news and prayers for those in need.
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Dawn - I often wonder why our tumors aren't checked from the git-go. It seems to me that that would save us from chemo we don't need and give us a better shot with chemo that has the best potential to work.
Not a question, but why?
My best to you, Jan
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Dawn - that is such good news!!!
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Great news, Inmate.
regbeach: the neulasta shot helps bring the white blood cell count back up within 14 days for the next chemo, but you can still be prone to infection... especially as I recall, it was days 7-10 when WBCs were lowest, at least for me.) Good idea to check temps twice a day, that is the earliest warning signal.
jen: glad to hear about the clean scan - woo hoo!
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Stupidboob- I did, Im three weeks past my last chemo (tax) and it is slowly getting better. Im using a proair inhaler which helps some.
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jcolford-I have been complaining about pain for awhile now, my last chemo was October 2011. At my last appointment my nurse told me that some study showed that the ac combination can cause muscle pain starting 6 months AFTER treatment ends and can continue for a year or so. I wish I would have gotten the name of the study. It has been a year and a half for me
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Schatzi-I am 3% er positive and my mo really wants me on an anti-hormomal. I tried aromasin, too much joint pain, I tried tamoxifen, too severe of hot flashes. I now have had a hysterectomy and he wants me to try tamoxifen again, so I will try. I do have to say my tumor markers were the lowest when I was on aromasin, wasn't on tamoxifen long enough to be tested.
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Painting-Sorry you are going though this, good to be checked out but hopefully it is just an injury from working too hard! I do get leg cramps at night, docs can't figure it out and do not seem concerned. A prayer has been sent:)
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Inmate-That is wonderful!! Are you seeing the same doc? My MO is retiring:( I have decided to see Dr. Rinn
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So, all my labs came back good, my tumor markers are 32, which is down from 34 August 2012. Still sounds high, huh? But it is lower than when I was first diagnosed. I think they were something like 50 or 60, docs think tumor markers are a good indicator for me. My arms have been so heavy and my chest tight the past couple of days, I think I overstretched. I am starting pt again next friday, I hope it helps. So, no scans for me until August, Yippeeee! I think I already posted this but oh well:) Sorry for the repeat.
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Stupidboob, I have extreme shortness of breath from taxotere. I just had a cat scan to rule out a blood clot in lungs. I thought it was just a SE from chemo, but my MO ordered an immediate chest x ray (came back clear) and ct scan (don't know results yet). She said chemo will "decondition" you, so getting out of breath from exertion is to be expected, but I am getting out of breath from the simplest things and noticed a slight rawness when I tried to take a very deep breath. You may want to let our MO know- always better to be safe.
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Hello all! Love this site and all the valuable info! I am 56 years old with 2 beautiful daughters, ages 11 and 16, yes I'm an older Mom but don't truly feel old...just a number! We adopted our youngest from China! I was diagnosed with TNBC in February, 2013, just 5 days after finding a painful lump which appeared quickly! Started dose dense ac chemo in March 2013 and had my 2nd taxol treatment today..they had to reduce dosage by 20% however as my fingertips are still numb from first axel treatment. So I have 2 treatments remaining; meet with radiation oncologist and breast surgeon in 2 weeks to make my surgery and radiation treatments. I had 2 lymph nodes involved so radiation is a must. Have been stressing a bit about lumpectomy vs mastectomy. Two breast surgeons said ill attain same result either way and would be more concerned about C occurring somewhere else eg brain, bone, liver or lungs...ugh! So as of today I'm thinking lumpectomy unless surgeon suggests otherwise. My lump s in left breast at very tip near underarm so I have alot of healthy tissue in that breast. I'm hoping with a change of lifestyle including diet and exercise I can avoid any systemic C or recurrence. I'm up for any suggestions relative to diet...have been researching and right now it's so overwhelming...but vegetarian sounds like a good solution and exercise like crazy!
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Sorry you all have dealt with the shortness of breath.
sweetpickle thank for letting me know and I am glad yours is getting better..............:) I ask for an inhaler or a nebulizer machine but the doctor did not feel I needed it.
slv58 I am glad that your chest x-ray did not reveal anything. I thought I would get one too but she did not order it. The day I called to tell them what was going on she said for me to come in for a cat scan and so I went but whom ever was suppose to mark my chart iodine allergy did not do it and so I could not have it. They said you have to have the iodine when looking for a blood clot. After examining me she said I did not have any of the other signs of a blood clot so we treated it with allergy meds and was told to go to the ER if the breathing got worse. There is another test you can do but I have done it and I really did not think I could go through it then.....to much anxiety freaking out over not being able to breath. I do hope your cat scan reveals nothing as well.
Thank you ladies for sharing.........makes me feel better that I am not alone......(not that I feel better you are going through it)
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bak94 good news..........:)
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Stupidboob- I couldnt imagine dealing with theshortness of breath without my inhaler, at times it got really bad which was scary to me but the inhaler is an immediate relief. Im sorry that your doctor feels that you dont need it. Is there another doctor you can see like a primary care physician?
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Dawn, that is really great news! I had no idea there was something like that available. Did everyone else know that one can get genome (sorry, is this word correct) tested? What exactly does that mean, and I am wondering why is it not part of standard care for everyone?
Bak - I get tumor markers done too, used to every 3 months, now it is every 6 months. I have created a spreadsheet, and I mark all the three that I get. My markers (knock on wood) taken as recently as April were as low as 6.7. All three are low. that is why I am not freaking out way too much right now. I am very very tired, it could be due to the thyroid.
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My name is Tracy. 40 y/o live in Northern VA
diagnosed myself right before yearly mamo
sent to ultrasound , followed immediately by biopys
had mri,, and the genetics.
nightmare so far..I am switching to JH in batl. I Hate beinge triple neg...this just kills me
I iswitched to Johns hopkins but my first di did not even let me do radiation...any clue why? I never found out.
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I had a hard time accepting the TN diagnosis but now after sometime I just regard it as cancer, they all suck. There are many woman one here who know the TN data better than me. I believe chemo is pretty standard for TN and radiation based on size of tumor and how many nodes.
Dawn - I too think that genome is awesome but i believe it expensive and insurance doesn't pay. Can you comfirm? Is it known for accuracy?
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I can't fathom not even suggestion radation my tumor is 2cm by 2cm
with 0 no nodes
they offered 0 radationa and just chemo.
Why would they not offered it?? Can experts clue me in?
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