Calling all TNs
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Hi Everyone - ((waving))
Bluebird and Meadow - I'm with you in the nature department. I live in a log home on 30 acres of woods, moutain-like terrain with a big, fast-flowing creek. We have wild azaleas and mountain laurel (which is now blooming.) I have lots of bird feeders to watch too. I love being out in nature and a lot of my watercolors reflect that.
Breaking news today! I am now BRCA2 positive!! My original tumor was tested by Myriad from DNA in my mouth (buccal wash) and the results said BRCA1/2 negative. I also had King Labs (trial) do a BROCA expanded test using blood. It also said BRCA1/2 neg. I had a new gene testing done by Foundation One. It tests tumor tissue so
maybe it is more accurate? Or maybe the tumor mutated? I will probably now have to have a hysterectomy down the road.The Foundation test also found amplification in
EGFR which there are FDA approved drugs that I could try. The third
mutation was in TP53 gene and there are some trials that are testing
drugs for it, so it has really increased my options.My CT Scan from Tuesday showed I was "stable." It showed some regression in most of my nodes. I'll take that! My MO was pleased. So, I will continue with Paclitaxel for now.
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Hello Ladies,
I have recently posted elsewhere on this website which is new to me - still trying to find my way around:-). I was diagnosed with TN in January 2014 at the atypical age of 66, and have just had my second of 13 weekly Taxol treatments (details in signature). Didn't really get sick with AC - just slowed me down a bit, but about a week after finishing the AC got some pesky SE - mouth too sore to eat (Miracle Mouth Wash and time eventually fixed that), some troublesome skin issues (steroid mousse cream from my derm helped a lot with that), and most pesky of all - lost one big toe nail and other one not lookin' so good, but hanging in there. I am determined to do any and everything I can to prevent more nail loss or prevent or lessen neuropathy from the Taxol. On the advice of my onc's office, I am using ElastoGel cyrotherapy (frozen slippers and gloves) while the Taxol is being administered. Also using tea tree oil on nails. Are there any other tips out there?? Did anyone else use cyrotherapy in any form (eg, frozen peas, or ice chips), and if so was it successful in preventing nail loss and neuropathy?
Thanks so much!
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mom mom - I used ice on my hands and feet during taxol because I was paranoid about getting neuropathy. I did not get neuropathy.! I am glad I did the icing. I did not lose any nails either. Good luck. Everything is worth a try in my opinion. I also had acupuncture every week to prevent neuropathy.
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Adagio - Thank you for this feedback!! I think I will give acupuncture a try - you are not the first person I've heard say this. I've never tried it before and the idea of more needles is not too appealing but I'm also paranoid about the neuropathy. Thank you again!!
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Bluebird thank you so much for posting the poem. I have read it thru like 5 times now. I have never heard it before and I love it. Thank you.
Cat your home sounds so lovely I am imagining the running water and fresh air. So wonderful
mommom I wish I had taken more care to avoid neuropathy, I finished chemo Dec 10, and I still have issues with it. It is better, but still there
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mom mom, I also did icing during taxol(dose dense) and have no neuropathy in my hands and minimal neuropathy in 1 toe on L foot (weird I know, just one toe, maybe didn't keep that toe cold enough when icing). Nails stayed great and are even real hard now. Also took L glutamine during taxol and vit B6 and biotin. Don't know if it helped but it couldn't hurt.
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Hey to all the old timers and the new ladies! As far as the eye thing goes...I have always been very very near sighted so I don't think I can get much worse but really no issues as far as that....did have some neuropathy in my feet but didn't last long..
Been really super busy but always checking in with you all....my youngest child graduated from college last weekend..so now looking for a job as a financial planner....he will relocate...even go to NZ and live with you Annie....that way I can come too!
Have a mammo coming up this month...ugh....not sure what day it is...will wait until it pops up on my calendar....
We are finally getting some spring in Ohio....has been a cold snowy winter..... still running the 5k's...and at age 54....just started running at 50 after treatments...I can kinda feel the age creeping up on me...ah well....it is what it is...
Glad to see this thread is thriving....really helped me when I needed the most support....and am so happy to come back now and then and support all of you....it really does help
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Hi everyone. I'm new to the forum and wanted to talk to others with TN. I found a lump last September and started the whirlwind of tests. The first scheduled biopsy was canceled by the attending doctor as she said it was an infected cyst, prescribed me antibiotics and sent me on my way. A month later I had another biopsy that actually went through and the results took forever to come back. The first results came back as DCIS. They sent the results to Stanford and they came back as IDC. By the time I saw the oncologist, my tumor had grown twice as big as it was in September. We did neoadjuvant therapy to shrink the tumor and to move it away from my chest wall. I had surgery 2 weeks ago and the tumor did shrink by about half and the cancer was still alive (which really upset me, as I was expecting it all to be dead) and found evidence of it trying to invade my blood vessels and lymphatic system. My full path results are still not back from Stanford. The local report says IDC and DCIS found and possibly metaplastic. I don't know what metaplastic is. My nodes were 0/4, so I'm thrilled about that and my margins are clear.
I go for my simulation appointment for radiation next week. Not looking forward to that.
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Cenri76 welcome to the club nobody wants to join. I also have metaplastic cancer which is a rare type. It's where cells have changed from one to another. Treatment is the same as any other invasive cancer. Usually radiotherapy is not given unless there are nodes affected. In my case they were but in yours they weren't but it sounds like it was on the way to invade the nodes. It's a shame your first doctor said it was a cyst because this just holds up diagnosis and treatment. I'm sure you will do well with your treatment and come through it with flying colours. Don't be afraid of radiation. For me it was the best part of the whole treatment and I had no problems whatsoever. Good luck and please keep in touch.
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Mine is also Metaplastic. We have a FB page for just us meta types. It is a private group and you have to request to be added. Look for Bena Roberts on FB and she can add you as she is the creator of the page. It is so helpful as women from all over the world are on there just like here and it is specific to our needs!
Maggie
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It's Mother's Day here in NZ. I'm not sure if it's the same for all of you but to all you wonderful, courageous ladies I wish you the very best Mothers Day with lots of love.
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Mags thanks for that I will look Bene up.
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To all the wonderful moms on this thread - may you have a wonderful Mother's day.
Hugs,
Linda
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Mags and Cenri,
A friend of a friend was just diagnosed metaplastic last week and she asked me to see her tomorrow to give her advice. Any ideas, other than the FB page that was mentioned above? She is 4 cm, node positive but not sure how many, weakly er positive, pr hegative, her2 negative. Thanks and best wishes to you both.
I am TN, but not Metaplastic.
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I'm not triple neg, but my cancer buddy was...she was diagnosed 3 months after me, in July, 2013..her funeral was a week ago yesterday( Friday). I'm still in shock, still trying to find answers,trying to make some sense of it all...reading your experiences with eye issues also got my attention.... When I finished chemo and rads, I was suddenly a candidate for cataract surgery, both eyes...I suspected the treatment was responsible for the change....6 months prior to beginning treatment my eyes were fine....your posts have pretty much confirmed it for me now...my best to each of you as you battle on....
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So sorry SaraJane, for the loss of your friend. Hopefully one day we will not lose each other because cancer is no more.
Sending love your way
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Sarajane, that's so sad. Was your friend dx as stage IV?? They was very quick.
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Thanks Meadow and Nettie....Yes. She was stage IV from the beginning...but according to what her doctors were telling her, (so she shared with me anyway)that she would live a long life, no need in worrying about a will or getting her affairs in order,they had lots of drugs to try on her, if one failed they would try another ..no sweat.... We talked every other day, if not every day at least..she was still working a few hours a week...one day she stopped responding, didn't answer her phone when I called...her daughter contacted me and said they had done a brain mri and found several hemorrhages...and as a family had decided to go on hospice care....she died within a few days of that call...I am having a difficult accepting this, understanding how this could have happened so fast.....were the doctors filling her with false hope or was she fighting so hard, determined to beat this thing, regardless of what they were telling her, when there was no hope all along????? I just don't know...its just so hard....we were there for each other each step of the way..and suddenly she is gone..just like that...
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Sarajaneeva how heart breaking for you that you lost your friend so quick and unexpectedly. May be the treatment she was on just didn't agree with her. I was warned about blood clots on chemo or maybe it was just her time. Make sure you see the beauty in each day and live for yourself and her. Sending big warm hugs to you.
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Sarajane: so sorry for the loss of your friend. I have just got to believe that the doctors had hope that some form of treatment would help her. Wishing you peace and comfort dear lady.
Wishing everyone a Happy Mothers Day.
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SaraJane, So very sorry to hear of the loss of your dear friend. May you find comfort in the memories of your friendship.
Also wishing everyone a wonderful Mother's Day.
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placid44...there is not all that much info about MBC out there and some of it is too scary if you are just googling. On the MBC FB page there are many articles all on one spot. Even if she joins just to be able to read the articles about treatment etc I think it would help her so much. There are many long term surviving ladies there too so that is always uplifting...knowing that YOU can beat this monster!
Maggie
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Thanks Cocker,Navy Mom and MomMom-I am a firm believer in everything happening for a reason, but it's not always easy to accept regardless of how much you believe-
I appreciate your kind words and thank you for them-I just miss her so much- all I can do now is be there for the family -so devastating for them...some tough days ahead with Mother's Day today. Her birthday follows in a few days-They have sceheduled her burial to take place on her birthday-they couldn't get her cremated before the service ):
Happy Mother's Day to all- wishing you strength to carry on the fight
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Just checking in to say "hi" . I have four more radiation boosts to go and I'm done! This weekend I got a little more excitement than I bargined for. I ate too many dried figs and ended up with a small bowel obstruction. I've had them before due to adhesions from extensive abdominal surgery. I could tell I was getting one on Friday, so I crawled into rads and asked them to take me early which they did right away. Then I crawled over to the ER and they admitted me right away. There is some benefit to looking like a cancer patient (no hair to speak of) when going to the ER! I've never seen them get me in a room so fast and seen by a doc. They put in an NG tube and everything finally resolved itself Saturday night. I got checked out Sunday around noon....so it's back to rads on Monday. Fortunately my skin is holding up really well. I didn't even think about it while I had that (painful) NG tube in! I just feel very grateful that the obstruction resolved itself on it's own. It requires surgery if it doesn't.
Fiercebluebird, that is amazing about your new test. I hope that it helps you a lot in the future with new options.
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Questions on "Neuropathy" from reading the posts and looking up the meaning I understand it has to do with Taxol? - My last chemo treatment was in July 2013 - my big toe nail fell of in February 2014 - now the rest of my toe nails are disgusting - yellow, hard in some respect but soft at the tops of some of the smaller toe nails, crooked and just darn right awful looking. Does anyone know why it too so long after chemo treatments and how I get them back to normal? I was aware I could lose my toe nails but just didn't pay attention to it all. I guess too many other things to worry about at the time.
Any info would be appreciated.
Thanks - LPBoston
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I am curious too Boston, I finished chemo in December, I am still having issues with neuropathy. So you just lost a toenail?!! Curious to see if other have had this delayed side effect, I have read, it can take 2 years for toes to feel normal ,and maybe never....
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Boston I see it was in Feb, few months back
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That is awful news. My toenails and fingernails hurt like crazy although none have come off yet.
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Yes, I have heard from other TN women that they have lost toenails in particular many months post chemo. I've been told that it can happen up to a year post chemo! I will have my third of 12 weekly Taxol this week and have been icing my feet and hands to hopefully prevent more nail loss (already lost a big toenail on AC and the other one is "iffy" but hanging on). Icing may or may not help lessen neuropathy - worth a shot. Good luck to all of you fighting the nail loss. It may not sound like a big deal, but it's painful and very time consuming to deal with. I've been to the podiatrist at least 4 times already. Hope I never see him again:-).
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