TRIPLE POSITIVE GROUP

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    cherry - that is why my oncologist used the drug Triamterene - it is potassium sparing.

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Lita, KB870, thank you for your reply, I do not have any swelling in my face, have just checked it in the bathroom, it is a bit red of cortisone, but it has not swelled so far. My fingers are not so swollen either but my feet are down from the shines, around my ankles, I have had the flying socks on me the whole day and now I am trying to elevate them. I have just called my oncologist office and a nurse will contact me soon.

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    bareclaws, thank you, what about potassium and what food shall I eat?

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    SpecialK, do you mean I need more potassium?

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  • sportsmom16
    sportsmom16 Member Posts: 25
    edited September 2017

    Hi All-- finished my hard chemo awhile ago - had masectomy, reconstruction - still getting Herceptin until end of December - and am on Tamoxofin-- have some great days but today I literally could not drag myself out of bed. Alarm went off at 7 and didnt wake up till 10;30. Totally late for work!! Is anybody else this tired-- no other symptoms just some days am exhausted--sort of hate the Tamoxofin --anyone else?

    Does anyone know if I have my ovaries removed can I stop this drug?

    Anyone else have this episodic exhaustion? Just wondering-- trying to put this behind me - hear about people who work completely through chemo and I am on Herception and Tamoxofin only and feel like a wimp-

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2017

    Go easy on yourself SportsMom16. Go real easy.

    I worked but nothing like I did before diagnosis.

    I could not tell from your profile what surgery (if any) you had but those can also take a while to heal from.

    As for your ovaries, I had a robotic hysterectomy in February while on Herceptin only and finished Herceptin 14 August 2017.

    As for hitting rock bottom, I hit it April 2017. Got an iron infusion and felt better.

    My Oncology Nurse said to feel some energy return in 3 to 4 months after my last treatment. She said I should have my energy back in about one year. Today, I could not push the grocery cart that was full. I still have some trouble lifting.

    It just takes time. It just takes a while to feel better. There are good days and not so good days. What I try to remember is that my cancers are gone. That really helps with my energy.

    My nephew wrote me yesterday to ask if he could share my journey with a colleague that was just diagnosed. I cried when I read his email knowing the shock this woman was going through and what would be in front of her. ( I know I wrote about this earlier.)

    Then I looked down at my chest overflowing in a rounded tee shirt and re-framed me. I got some great boobs out of this. Would have preferred just the boob job but I can reframe it into a plus.

    Vicky


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  • T-Sue
    T-Sue Member Posts: 217
    edited September 2017

    HapB, so sorry for the loss of your friend. Sending you hugs!

    Cherry, I had weekly taxol and never had a problem with neuropathy. I remember that my doctor asked me in each visit if I had experienced swelling, so it's definitely worth going in and having them take a look. Hope you feel better soon!

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  • Kattis894
    Kattis894 Member Posts: 218
    edited September 2017

    Swelling? You should see your doctor. I can not remember why but know my onc used to check for swelling on my ankles..I think it has to do with some organ like kidneys perhaps that might take a beating during the chemo. Have it checked. Regarding a tingling feeling in your hands and feet, I had that a bit but it went away very quickly as I finished chemo, I have heard of some that has had it for awhile after chemo ended so it might take awhile to disappear.

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  • bareclaws
    bareclaws Member Posts: 345
    edited September 2017

    Cherry, I drank dandelion tea because it's a natural diuretic. And was careful to eat foods high in potassium, because many diuretics (even natural ones) can cause potassium to drop. If your potassium is too low, it can cause you tomhabe chemomdelayed.There are many lists of those foods, easy to find online.

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  • Taco1946
    Taco1946 Member Posts: 645
    edited September 2017

    Cherry - I had very painful neuropathy with Taxol. There was swelling in both hands and feet but not my face. I was given gabetinton (not certain of the spelling) by my MO and my neurologist upped the dosage. The packaging said it is also used for shingles if that helps you find it. I also stopped Taxol with my MO's support after 8 infusions because of the pain.

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  • deni1661
    deni1661 Member Posts: 463
    edited September 2017

    Hapb I'm so very sorry for your loss. How tragic to lose such a close frien

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  • deni1661
    deni1661 Member Posts: 463
    edited September 2017

    Sportsmom, I'm experiencing extreme fatigue it comes and goes. Some days I can barely move I'm so tired.I had my last HP a month ago. I think Coach Vicky is right - we need time for our bodies to heal. Not only from the drugs but surgery and recon too. I tell myself to be patient, that it's a process. We've been through so much and as Hapb said we need to rebuild our cells. Hang in there

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  • kae_md99
    kae_md99 Member Posts: 621
    edited September 2017

    sportsmom,

    like deni i am experiencing fatigue too. worse in the afternoon. had my 11th herceptin last friday and i think it made it worse. last chemo was june 2 and bmx july 14. it sucks.. i have a friend who only started to feel better 1 year after last chemo so i guess it will take a while...like right now i can barely keep my eyes open and its only 5:30 pm where i live and there is still homework and piano for the twins. sigh.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    cherry - no, I mean this particular diuretic does not cause you to lose potassium, you don't need to supplement with extra potassium while taking it.


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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    I have contacted my oncologist office regarding the swelling and they just called me back. They said that swelling in feet is common for Taxol and I should use my orthopedic socks during the day and then if it gets worse I have to contact them. It subdued now but I have six treatments to go. I had my first echo today, it went well, they said everything looked good. The pain in my hands is not as bad as it was yesterday but is still there and the surgery area in my left breast hurts like aching all the time, has anyone experienced that during the treatment, anyone who did adjuvant?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    cherry - there are a number of reasons for swelling during treatment - the Herceptin can cause cardiac issues, this is why we usually have a baseline echo/MUGA and have them repeated quarterly throughout the year of Herceptin, the chemo agents themselves can cause allergic reaction and swelling, and the steroids that are given to prevent allergic reaction and help control nausea can also cause swelling. Excellent timing on the echo, that helps rule out any cardiac issues. From the mid-point on I had swelling, and a photosensitive rash on my arms. That bought me extra steroids, which in turn, caused more swelling. I just had to ride it out, with the help of the diuretic, but do make sure your oncologist is aware of when you experience this swelling in relation to your infusion. I had adjuvant chemo and did experience some discomfort at the surgical site of the cancer breast, which had a mastectomy and expander. During chemo the other side was flat, having had the expander removed. For you, starting chemo relatively soon after surgery, this would not be unusual. Chemo inhibits healing, and causes soft tissue irritation, so it makes sense that your recent surgical site may ache.

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    While we're on the topic of strange symptoms like swelling, does anyone experience inflammation and irritation in their mouths? I notice that I'll feel the inside of my mouth is 'puffy'. It will also get dry and my dentist suggested biotene as a moisturizer. And finally, I'll get irritated at the roof of my mouth very easily (almost as though I've burned it, when I know I haven't)...

    I am wondering if this is a Letrazole side effect? During my dental work, the dentist noticed that my gums were tender and there was overall a bit of inflammation in my mouth.

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Thank you SpecialK, the nurse told me to stay in orthopedic socks during the day and to take them off at night. I will follow it up with my oncologist in two weeks.

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  • Dannajae
    Dannajae Member Posts: 40
    edited September 2017

    poseygirl, I haven’t started my chemo yet, but I did read somewhere that it helps if you suck on ice during treatment

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    thanks, Danna, but I finished chemo in October and Herceptin 2 weeks ago. I'm just on Letrazole now..

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    For any who are interested in the backstory behind bringing Herceptin to the market and making it available for us, there is a book by Robert Bazell, the former chief health and science correspondent for NBC, now a professor at Yale. It is called Her2 - The Making of Herceptin. Also worth watching is the movie Living Proof, starring Harry Connick, Jr. as Dr. Dennis Slamon, the UCLA oncologist and researcher who was instrumental in the development of Herceptin.

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited September 2017

    Even though I'm not triple positive I enjoy this active chats, I learned so much from here especially I'm interested to find out how each of you handle taxol.


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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Hi everybody, I have another question: is it possible to take antibiotics while on Taxol? I had since a long time ago a filling in one of my teeth where the dentist left a bit of metallic thread in one of the channels. Another dentist here in Sweden, actually an American by birthe, took care of it and sealed it but told me that it eventually it has to be removed due to infection. I never had any problems with the tooth but last year my new dentist said that they observe some infection on the x-ray and they booked a surgery time for me in a special clinic. In June they did a surgery where they removed a bit of the root with the metallic thread and it healed very well, I had no problems. In two weeks I was diagnosed with the bc. Now I experience like flashed of pain in this tooth and assume that I need to go to the dentist again and just wonder if anyone took antibiotics while on Taxol?

    Overall I am so down again, even though I am on a mild anti-depressive, I wonder whether this treatment is messing with my mind. It is my birthday today and I cannot look at myself at the mirror, I look awful, I feel awful. I have been having this pain between my shoulders that started a week after diagnosis. My BS, GP, two of PT (one from the cancer rehab and another one through my GP), all of them are claiming it is caused by muscle ties, they can feel those, even I can feel those. The cancer rehab PT is sure that my constant worries are causing me being so tense in this area. They thought the anti-depressive will help but so far it did not. They did not do any scan but a usual x-ray that came back clean showing some artritis and worn parts as they said. When the PT works on the muscle ties I have a lot of pain the days after, but I am doing exercises and walking and trying to adjust my posture. Laying on ice packs and warm packs, sometimes it gets better sometimes it gets worse but it does not go away and I am constantly worried. Anyone who experienced the similar problem and knows any exercises that can help?

    And now our cat's tail got swollen and on my birthday my husband and my eldest are at the vet's with our cat and I wonder whether I might caused it when I was trying to hold the cat and see if she got any ticks and she was trying to get away from me and whether I twitched her tail or if it already was damaged when she rolled of the table and fall few days ago.

    Cherry

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  • LTWJ
    LTWJ Member Posts: 121
    edited September 2017

    Happy Birthday Cherry-sw 🎉!

    My oncologist gave me 2 prescriptions for antibiotics to take anytime I felt I had an infection. It’s funny tne day before I started chemo I went to the dentist and was told I had 2 cavities but both were in teeth with root canals so they didn’t hurt. After each chemo treatment one of tne gums near one of tn3 teeth would swell, then go back down everytime. I just finished my last chemo 2 weeks ago but I’m still having nausea/ diarrhea problems so im waiting for that to stop before going the dentist to get them fixed.

    I also have pain between my shoulders and I had neck surgery last year where they put a brace around my cervical spine, and I’m terrified I’ve messed that up so much laying around from exhaustion. I’m working hard on my posture and using heating pads. I know I tense up from stress so I have to work on that. Yoga and meditation help me here, think about good times now and in tne future!

    It will get better 😊 Enjoy your birthday

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    cherry - first, Happy Birthday! I know that it is hard to celebrate your birthday when you have all this going on, but focus on your next birthday when this is behind you. Because treatment for triple positive is so long, all of us have a birthday during treatment. I had a birthday 12 days after diagnosis, and then another 4 months after my last chemo, still on Herceptin and I was turning 55. I have a photo of myself with a birthday cake and my hair is about half an inch long and all gray - I didn't look cute, but I was alive to celebrate and count my blessings. Yes, you can take an antibiotic while receiving chemo - I had a UTI while on TCH and took one. Patients for whom Neulasta is ineffective sometimes have to take prophylactic antibiotics when they experience a drop in white blood cells that leaves them vulnerable to infection. Of course, let your oncologist know which antibiotic is being suggested.

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2017

    Happy Birthday, Cherry!

    You are ALIVE and beating this!

    Vicky

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  • moodyblues
    moodyblues Member Posts: 470
    edited September 2017

    Happy Birthday Cherry!  

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  • moodyblues
    moodyblues Member Posts: 470
    edited September 2017

    image

    Ringing the bell!  Thanking God I am through with chemo!
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  • moodyblues
    moodyblues Member Posts: 470
    edited September 2017

    image

    My Chauffer, supporter, husband.  Celebrating this milestone with me.
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  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2017

    He's a keeper, Melanie!

    Vicky


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