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Stage 2 Sisters Club

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  • GoKale4320
    GoKale4320 Member Posts: 580
    edited January 2019
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    TaRenee - what about other vitamins such as Vitamin B complex, Vitamin D, and Magnesium? Are you following a special diet where you might be missing some vitamins? I hope you feel better soon without having to do anything more drastic than taking some vitamins.

  • TaRenee
    TaRenee Member Posts: 406
    edited January 2019
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    I do take Vitamin D and Magnesuim. I also take a women’s multivitamin. No special diet unless you count that I’m trying to eat more healthy and drop some of the breads and pasta. (I swear that might just kill me) So I’m eating more seafood and veggies and free range raised beef and chicken. Today my legs felt all crampy all day. I did some stretches before I got into bed. Hopefully that helps. I’m still exhausted.

  • MexicoHeather
    MexicoHeather Member Posts: 147
    edited January 2019
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    GoKale: I have this happen from time to time. It comes from being very dry.It is dried blood and skin cells. A vaginal moisturizer will loosen up the skin, sometimes it will be excreted in flecks. This isn't a large quantity of material. If you're having lots of spotting, definitely tell your gynecologist.

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited January 2019
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    MexicoHeather - Thank you so much. Your description is exactly the way it was for me. That does make me feel better. I saw the nurse practitioner yesterday for a repeat Pap (the one I had done 3 weeks earlier did not get enough cells to do the test). She explained that the "not enough cells" result is common in women with declining estrogen. The cells atrophy along with the vagina.

    She also said that the spotting could very well be dried blood from the previous pap smear. She said to watch bc I could spot again from the repeat pap, but to make sure it is just a little spotting and not heavier.

    So with her explanation and your description that matches my experience, I feel relieved. Thanks!

    For anyone else who is experiencing dryness - I use coconut oil on an as-needed basis. It works well for me with no side effects.


  • GoKale4320
    GoKale4320 Member Posts: 580
    edited February 2019
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    Just to update: I had the repeat pap done on 1/21 and I have not been called about it so I assume all is well.

    I had one slightly elevated liver enzyme back in September and they wanted to do a CT scan of my abdomen "just to make sure", but I refused it. So I just had another blood draw on Wednesday and the results on the enzymes came back within the acceptable range. Very glad! And the interesting thing is that this last month has been hectic without enough sleep and decreased exercise so I was expecting a poor result on the test. Such a nice surprise. The only difference between the September test and the January test is that I stopped taking Claritin in September. Claritin does not harm the liver, but can very slightly elevate the enzymes. For regular people, this is not a problem, but for those whose oncologists are watching every tiny increase for evidence of disease, it is bothersome.

    So I just thought I would throw this out there in case it might help someone.

  • ruthbru
    ruthbru Member Posts: 47,246
    edited February 2019
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    Glad for your good results, Gokale!

    I just got back from a week in Arizona. I was very happy to miss the Polar Vortex, although another storm followed by more cold weather is headed my way. Sad

  • TaRenee
    TaRenee Member Posts: 406
    edited February 2019
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    Ruthbru we didn’t do too badly with the cold here. Not like you got it. I think the lowest high was 30 last week here with a low of about 15 and tomorrow it is supposed to be 70. I’m gonna get sick just from the swings in temp! It has, thankfully, quit raining for a few days so maybe the mud can dry out a bit. I’m way tired of the rain. It doesn’t help with depression at all. Happy Monday everyone

  • MexicoHeather
    MexicoHeather Member Posts: 147
    edited April 2019
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    My hand was numb all day. The scar under my arm really gets tight, and I have to massage and stretch out constantly. I just needed to say that.

    It's hard to not think about bc when the scar is tight.

  • ruthbru
    ruthbru Member Posts: 47,246
    edited April 2019
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    Mexico, have you seen a doctor or PT about your issues?

  • MexicoHeather
    MexicoHeather Member Posts: 147
    edited April 2019
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    Yep. I have been through PT twice, MRI and had nerve conductivity testing, showing nothing horrible. It's a combo of the scar, the shoulder weakness because on lymph nodes and AI medication. Next visit is in May for blood work.

  • ruthbru
    ruthbru Member Posts: 47,246
    edited April 2019
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    Are you on a regular exercise program? That is what helped me get back my upper body strength/mobility (I had 11 nodes removed & was on an AI for 5 years).

  • MexicoHeather
    MexicoHeather Member Posts: 147
    edited April 2019
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    I am starting a dance class tomorrow.

    I have been poking along the scar line, and I think I found a little lump, fingertips sized.. I'm going to see if goes away, loosens up.It's probably scar tissue, right? I have allergies this week, too.

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited April 2019
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    MexicoHeather, chances are it’s a scar tissue, but schedule an appt with your doctor for the peace of mind.

  • jo6359
    jo6359 Member Posts: 1,993
    edited April 2019
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    I met my new oncologist today. She is warm, compassionate and extremely professional. She has written numerous professional articles on her2-positive treatment and triple-negative. Even though this facility is part of a large complex network, the whole navigational process was extremely easy. My new oncologist agrees with my formal oncologist; no scans unless there's an issue with blood work, complaints or issues/problems upon physical examination. I am 100% behind that decision. It was a huge relief. My next step will be my port removal. I never experienced any issues with my port because it was placed during my BMX. All in all it turned into a very positive experience.

  • ruthbru
    ruthbru Member Posts: 47,246
    edited April 2019
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    Great to hear, Jo! Getting the port out made me SO, SO happy. With it out, I felt I had crossed a big hurdle towards getting my life back to 'normal'.

  • jo6359
    jo6359 Member Posts: 1,993
    edited April 2019
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    Ruth-thanks. Glad to hear spring is on the horizon for you. You deserve it after the winter you've been through

  • ruthbru
    ruthbru Member Posts: 47,246
    edited April 2019
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    I think the weather has been crazy all over the country this year.

  • runor
    runor Member Posts: 1,613
    edited April 2019
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    MexicoHeather, I have had to come up with some crazy and extreme stretches to finally wrestle my lymphedema to a manageable situation. It still flares. I never know what sets it off. Closer to the surgery time I had the typical swelling in my arm and hand and it ached. Boy, did it ache! I did all sorts of stretched and things sitting and standing and it wasn't until I laid flat on the floor on my back and started doing stretches that things improved. And they hurt! Holy Hannah they hurt! But, it helped.

    With spring here and being outside working in the yard, raking, hoeing, lopping branches, picking up deadfall, lugging wheelbarrow loads of junk to be dumped, I woke with that puffed feeling under my arm like I was carrying a big, folded towel. I tend to swell in the breast, the armpit, the shoulder blade, down my side and the ribs under my bad boob. Feels like someone injected fluid under my skin. Awful! But it's those on the back floor stretches, and now one where I hang onto the edge of the kitchen sink that have helepd me the most. Grasping the edge of the kitchen sink for support, bend over at the waist and walk backwards, making your back flat, parallel with the floor, leaning slightly backward into the stretch, holding onto the edge of the sink. Let your head fall where it's comfortable. THAT stretch I really feel. That will get rid of the swelling in a few days. But go easy if your neck and shoulders are stiff.

    Good luck with getting the swelling under control. A constant reminder that things aren't as they used to be.

  • MexicoHeather
    MexicoHeather Member Posts: 147
    edited April 2019
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    Thank you. I just did a set of on the floor arm exercises..My neck doesn't look as puffy today.

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited April 2019
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    Here's a link for manual lympnode drainage/massage.

    https://www.healthline.com/health/how-to-perform-lymphatic-drainage-massage#effectiveness

    There are certain points in your body where you first stimulate the lymph system using small circular massage - the abdomen, both sides of your shoulder near your neck (where it indents). Then I do small circular massage under my good armpit, then across my chest to my bad armpit. All that stimulates the lymph system. To clear out the fluid, I then I do sweeping motions across my chest in the opposite direction.

    After that, I do small circular motions starting on my leg (on the bad side), below my hip, and work my way up my torso doing small circular motions up to my bad armpit again. Then I do sweeping motions in the opposite direction down my torso. I also do sweeping motions down my arm, holding my arm straight up and starting with my hand.

    There's another exercise: arm straight up, then do a twisting motion with your hand as if you are screwing in a light bulb, but also opening and closing your hand.

    I wear KT tape on my arm daily. When I take a break from the tape to help my skin recover from the adhesive, I wear a night compression sleeve and glove to sleep in. The material looks like an oven mitt - very funny looking. But it does a good job. I got it through my physical therapist and was paid for with insurance. It's expensive, but I hope it lasts several years.

    The KT tape is really inexpensive. I bought a bunch of it from Amazon. I think the cost break down is about 50 cents a strip, and I can wear each strip easily for 4-5 days.

    The physical therapist I saw during chemo and radiation specialized in breast cancer patients and lymphedema. She was so helpful. If you haven't seen a PT, I would ask the primary care physician or oncologist for a referral.


  • Haliday
    Haliday Member Posts: 28
    edited April 2019
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    stage IIB. my second post. . .thanks for this forum. Just got a second opinion. The first opinion from my onc doc at Kaiser based on my oncotypeDX with a score of 9 was radiation and Arimidex with bone strengthening meds. Here is my 2nd opinion report.

    Dr. Park from UCSF has clearly seen it all and he did nothing but raise ambiguities (Step-daughter Dr. Walsh says that is what the best docs do). I couldn't read his face for clues and he declined to prefer any of several options. It is up to me. In short—
    **there is no way, no test, that, with certainty, reveals how many lymph nodes have cancer.
    **another surgery to harvest lymph nodes MAY reveal more, and if there ARE more, chemo would be definitively indicated. But, surgery. . .the risk of edema is higher than for radiation.
    **And radiation IS likely to kill cancer in the two identified lymph nodes and others. Probably. So not knowing if there are more might be okay.
    **and, btw, radiation does nothing to extend life but it does reduce chance of localized recurrence which would require a full mastectomy next go-round.
    **and the key treatment that DOES extend life is the anti-estrogen drug Arimidex which I would start after radiation. The OncoType DX indicated, with Arimidex and no chemo, I have only a 12% chance of recurrence elsewhere within 9 years.
    **SO chemo should still be in my treatment consideration set because, until only recently, anyone with cancerous lymph nodes would automatically get chemo before radiation. And the OncoType DX data set for women with lymph node invasion is still relatively new and relatively small. Though the news WAS woo hoo good.

    He agreed with Vitamin D3 supplements but was less enthusiastic about augmenting with Metformin and Zometa. He also emphasized that I don't have to rush into radiation.

    So, not rushing. Bone density scan tomorrow and meeting with radiation oncologist Thursday. More reading and thinking.

    Grateful for this forum. . .

  • garnersuz77
    garnersuz77 Member Posts: 36
    edited April 2019
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    Hi Haliday!

    We have similar stats. I know how tough it is to have some of the treatment decisions left up to you!I'm curious why Dr. Park wasn't enthusiastic about Zometa for you?

  • hikinglady
    hikinglady Member Posts: 625
    edited April 2019
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    Haliday how great that your MO clarified and contextualized all those options and benefits and risks. Objectively, by giving you lots of information. Now you have to weigh all that, and consider which benefits and risks you're willing to live with. Not easy; I send you warm support as you ponder all that information, and make your decisions.

    My MO added Zometa to my treatment plan when I started my AI. It's covered by my insurance because of b.c. + osteopenia, so I think he considers it a win-win for several reasons. He is happy that it 'protects against bone mets' in addition to helping with bone density that often is thinned by an AI. I was already diagnosed with osteopenia. I am happy, because it's not another pill to take. I tolerated my first Zometa infusion just fine---felt a little 'flu-ish' (fever, tired, achy, had a nap and no energy) Day 2 and then just fine after that.

  • Haliday
    Haliday Member Posts: 28
    edited April 2019
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    in response to zometa response from Park? I gather he thought calcium and Vitamind D were sufficient.

  • ruthbru
    ruthbru Member Posts: 47,246
    edited April 2019
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    Haliday, I don't know if you want advice, but in case you do, mine would be to really consider chemo. You KNOW that 2 nodes are positive, so the horse is out of the barn (so to speak). I had a large, fast growing tumor and did chemo because, even though my nodes were officially clear, there was still a 50/50 chance that some micro-cells had escaped into the blood stream. (I should add that this was before the oncotypeDX test was given so if that had come back low, I don't know what I would have done). Another thing to consider is that some people have a really hard time on the anti-hormonals (I did not), and discontinue them early. So without chemo, you will need to be 100% committed to taking them no matter what.

  • Haliday
    Haliday Member Posts: 28
    edited April 2019
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    thanks Ruthbru. . .i am taking some time to think about this. And will discuss again with my primary oncdoc. I can argue this both ways myself. 😍

  • runor
    runor Member Posts: 1,613
    edited April 2019
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    Haliday, I am sorry you're here. I am glad you are taking time to research and ponder your options. It's a lot to take in and digest when you are knocked off course like this. You will find personal stories on this site that may help you with your decisions. Good luck with whatever you decide.

  • MexicoHeather
    MexicoHeather Member Posts: 147
    edited April 2019
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    Hi Haliday. Yes, there's a lot to take in and different oncologists take different views on the lymph nodes. As you see, they took all of mine, then went to chemotherapy. Location of the cancer and three positive nodes led to the radiation.

  • Haliday
    Haliday Member Posts: 28
    edited April 2019
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    Thanks, all. Made treatment decisions today after meeting with radiologist. No chemo, no additional surgery. 16 rounds of radiation May 28-mid-June followed by 10 years of Arimidex. Feel good about decision.

  • ruthbru
    ruthbru Member Posts: 47,246
    edited April 2019
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    Making the decisions is the hardest part. Congratulations on getting past that hurdle and on to finishing up your treatments & the rest of your life! Heart