Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Chemo Starting August 2018

1353638404155

Comments

  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    Santabarbarian—that’s excellent news! Hey, we all know that we’re going to pay that out of pocket anyway so might was well get the treatment you want. Thanks for that info on the 7 weeks of radiation. I had no idea about that.

    I have to go have a passport photo taken. My passport is due to expire and I need a new one 😭 that picture is going to haunt me for 10 years!!!!! Maybe I should have bought a wig after all. I only have neon ones from my Burning Man days.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    hahahaha..... screw the island, how about radiation in Black Rock City?

  • santabarbarian
    santabarbarian Member Posts: 2,311

    Remember how when we were kids old ladies used to stuff tissues in their cardigan sleeve, so they were always at hand? Nuff said.

    I have started feeling *actually* good as opposed to relatively good. Little bursts of energy; being able to get through a simple task without it feeling like scaling a sheer cliff face.

    I had a skin cancer taken off today (yes in the middle of chemo I had a skin check-- melanoma in situ!--100% curable but it gets cut out. Big horizontal slice in my decolletage.

    On my new scale of 1-10: a one!

    Trying to get info about a proton radiation has been a bit tricky. The intake people are not prepared for savvy customers asking detailed questions. I kept feeling like I was the first person ever to call the 800 number who wasn't formulaic. But I am not going to fly actoss the US for an intake appointment only to find out I do not qualify for the treatment or can't get it covered. I have specific questions to vet before making an intake appt.

    Tilt! Nobody could process this.

    Anyhow, looked up the Doctor who runs the relevant dept,, and emailed him saying I had clinical questions and was there someone I could call to get them answered? He emailed me right back: "Yes. You could call me." w/ his cell phone! Pretty good service! I might want to go there just because of that...

    But I found out they also have a proton radiation trial for people who are stage 2/3, have been treated w chemo and surgery, doing proton rads. Observational... so you know what you're getting. Passing this on in case any of my chemo sisters are interested in proton radiation. If you go to U MD Cancer center, and click on their clinical trials it is there.

  • mactaz
    mactaz Member Posts: 592

    SB, Are you thinking about doing the trial? I hope you are able to get all the info you need and it works out for you.


  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    Santabarbarian—All of my pockets have Kleenex in them. I have boxes of Kleenex in every car. I should have bought stock in Kleenex.

    What a great dr to have you call him on his cell. That’s a great sign. You’re completely correct that the people answering the phone might not have any medical experience at all. I sometimes ask if the person I’m talking to is a nurse otherwise I find that I’m wasting my time trying to relay a concern or have a question answered.

    Wish I was closer to U MD. That sounds like a great clinical trial.

    Met with my BS yesterday. He said I can schedule a pre-op and have my prophylactic mastectomy in June!?! I wanted it done after rads which will probably be the second week in March. Another 🤬summer ruined from this shit. Great. He also talked briefly about reconstruction and that I would absolutely need a tissue expander and a latissimus dorsi flap to the left. So, nope. I’m going to be flat. Not doing any of that. Need to move on with my life and put cancer in the rear view mirror. I’ve gained 8 pounds and my body feels so much better. Less bony.

    I went to 2 different stores last week and wasn’t absolutely exhausted. That’s progress for me.

    I’m off to get a haircut and then my passport photo taken. I wish I was in Black Rock City with a neon wig on dusty as hell dancing in the desert. 😉 Maybe next year.

  • benji69
    benji69 Member Posts: 88

    10th taxol down, 2 to go! Oncologist said I am not candidate for carefully checking and conserving nodes because they already know they have cancer. 3 of them started out 3+ centimeters and positive on pet scan and no matter how much they shrunk they have to go along with a few others. Lucky I get to have lumpectomy because of shrinkage. MRI and another CT after taxol and before surgery. He and BS will discuss again after those tests but doesn’t sound like it will matter. I am going to stop obsessing about saving them, start lymphodemia exercises, be thankful it stopped at lymph nodes after my inexplicable neglect and think positively that I won’t have a problem. I was very lucky with no major side effects from chemo. I walked an average of 3 miles every day and did lots of heavy yard work all through. Starting to lose a little energy lately but I’ll have a short break before surgery.

    This has been my favorite and most useful group. Best wishes to all and keep posting. I’m following your helpful examples

  • mactaz
    mactaz Member Posts: 592

    Benji69, I bet you are happy to be so close and sounds like things have been going pretty well for you SE wise. What day is your final chemo?

    Sorry to hear about your lymph nodes, if they only are going to take out 3 plus a few others that is still better than all the axillary nodes. The fewer they take out the better, it reduces your risk of getting lymphedema. Also, I know that BS can put blue dye in your arm which will identify your lymphatic system in the arm and they can try to preserve those nodes which also helps. Mine is going to try that if she can, as long as the nuclear medicine shot has good uptake in the nodes - she will only go after the sentinel nodes for testing.

    Be sure to see if there is a surgery group for February 2019. I'm in the January group and it has really helped me out with a lot of info. You might want to check out the Surgery January 2019 group anyway - lots of discussions on there about all kinds of issues.

    Glad to here things are going well, stay strong and keep fighting.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    Benji I am so glad you got enough shrinkage for a less intense surgery!! -- and that you have withstood chemo so well. Exercise is extremely helpful I think. Bravo to you!

  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    Benji—the chemo finish line is in sight! Nice! 2 more to go! The exercise is great for the mind and body. I love my compression sleeve for my arm. I'm wearing it daily now. I went to see my BS and he was happy that I had great ROM in my shoulder. I stretch my arm all the time. I have to, otherwise it's so tight and uncomfortable. I also try to always use my left arm when reaching for things—to always keep it working—but that took months to do easily. I met with PT twice and they gave me some exercises to do but I just do my own thing and it seems to be working. My compressIon sleeve is that ugly medical beige color. Yuck. I ordered some fun ones off Amazon, pink and black designs, etc. much more me.

    Santabarbarian—hows the surgical excision on your chest? I had a ‘almost’ melanoma mole taken off my knee a few years ago. They go wide and deep, don’t they?

    My passport photo was awful. I bet they reject it. Not only am I bald, she managed to possibly take the worst photo of me ever taken. Great

  • santabarbarian
    santabarbarian Member Posts: 2,311

    Lets put it this way, my port scar is not the first thing you notice anymore! It's a large horizontal cut of about 4 cm, prtty much right in the middle of my chest above my boobs. But this surgeon is fantastic --- I have looked like a pirate before, when leaving her office, and have twice had a perfect result and no scar. On my face! So I have faith....

  • santabarbarian
    santabarbarian Member Posts: 2,311

    PS Well, if they take it you can always lose that passport and get another one.... :-)

  • Hughope1
    Hughope1 Member Posts: 116

    MAZTAC I am back, had chemo today, they dropped the perjeta. My oncologist called me last Friday and said they got such good results from chemo on tumor that I do not need added strain on my heart. I do not have my reconstruction until Feb 21. Things are going pretty well just trying to get my strength up for next surgery. I know yours in coming up quickly. So thrilled to be rid of the drains.

  • mactaz
    mactaz Member Posts: 592

    Hughope1, so glad to hear from you and that you are doing well. I’m glad to hear you don’t have to continue with perjeta, the fewer drugs we have to take the better. When did you get the drains out? Feb 21 will come quickly so stay strong and positive, just one more step closer to getting a halfway normal life back

    I’m getting mentally prepared, and just wanting to get past this. My girlfriend is flying in this weekend so we can have some galpal time, I really need that and I’m so excited. That will also help me with the following week.

    Take care and I’m so happy that you got such good results. Happy

  • benji69
    benji69 Member Posts: 88

    MoonGirl: Thank you for the update on how your arm is doing. I’ve wanted to ask.

    Keep the bad picture. How nice to hear people say you look so much better in person. People used to say I looked much younger than I am. Hasn’t happened lately. I don’t think my good passport picture ( good for 10 years) would let me get through customs right now.

  • wanderweg
    wanderweg Member Posts: 487

    santabarbarian - When did you get your port out? My MO is making me wait until after my first follow-up visit in February. I want it out! That's indeed a good sign that the doctor gave you his cell so you could ask questions.

    MGJ - Why the delay on the mastectomy? Does it have something to do with healing from radiation? I can't imagine how frustrating that must be for you.

    Benji - That's fantastic you were able to be so active throughout chemo - I'm sure that really helped. I find that now that I'm able to walk again, I'm regaining strength.

    Hughope - Isn't it such a relief to get those awful drains out? I HATED them. The reconstruction surgery will be here before you know it.

    MACTAZ - You're in the countdown. I was crazy scared beforehand, but somehow, you get through and start healing. I'm glad you're getting some time with a friend first.


  • santabarbarian
    santabarbarian Member Posts: 2,311

    wanderweg, My port came out half way. It never really healed right and I hated it -- they agreed it wasn't healing right and removed it. I did my last 3 chemos with IVs and then could not believe I went through all that port crap for the sake of saving me 6 total needle sticks.

  • wanderweg
    wanderweg Member Posts: 487

    Santabarbarian - That’s interesting to hear. I hate that it didn’t work and you had to have the two surgeries for nothing. Mine was a life-saver for me because I’m so needle phobic. And they used it in my last surgery as well. It will be accessed for labs for the last time in a couple of weeks and then it comes out. Fortunately, it healed up well so wasn’t a problem in that way for me.

  • Hughope1
    Hughope1 Member Posts: 116

    Maztec, Your surgery is right around the corner, I hope your girl friend is going to stay and help? Or hope that you have someone to help the first couple days. I was pretty sore.

    I don't think I could make it without my port, my veins are horrible. Just from my muga scan last Tue. I had to go through two nurses, before one could finally draw what they needed. They did not have an infusion center at that location so they could not use my port. None of them were certified for the port. My oncologist does not like anyone using it but infusion.


  • mactaz
    mactaz Member Posts: 592

    Hughope1, my girlfriend leaves tomorrow but my hubby takes good care of me so I will be okay. Hope all is going well for everyone. Take care

  • wanderweg
    wanderweg Member Posts: 487

    Hughope - I had to get my BS to write a letter okaying the use of my port for my ankle surgery. That way they could make sure there was a nurse there in pre-op who could do it. (I asked, and the nurse told me she used to work in the infusion center.)

  • Hughope1
    Hughope1 Member Posts: 116

    Just checking in girls, I am doing well. Have a lot of scar tissue under my rib cage where the drain was. No one told me I was suppose to be messaging that area to break it down.

    ShockedHopefully plastic surgeon will be able to clean it up some. Believe me I am messaging now. I read the reviews for my surgical location. They are doing it at Atlanta Outpatient surgery center. "I am scared" Reviews are horrible.

  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    2 rads done! Easy peasy. I just rip my shirts off and grab that pillow case and throw it over my right boob and then they zap me for a few minutes and I’m out the door. No red skin yet.

    Yes, my second mastectomy has to wait until after rads. I also want my port out! I will ask about getting it out next Tuesday when I see the onc. I have to have my port flushed then but they scheduled the port flush one hr prior to the drs appt. So annoying since I have to drive 30 miles now to the onc in Carson City.

  • mactaz
    mactaz Member Posts: 592

    Hughope1, sorry you had scaring and hopefully your PS will be able to take care of it. I had to rub my scar when I got bit by a dog and also when I had melanoma surgery. I didn't think about this so thank you for posting this.

    Had a great weekend with friend and truly helped having her here for a few days. I am good to go and just want to get this over with. Hubby is more stressed about it than me, not sure what I can do to help him.

    I love my port and couldn't go without it. I'm like you wanderweg, I am a needleaphobe and couldn't think of having that stuck in my arm all those times. Blood tests are bad enough.

    All take care -

  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    hug hope- Once my drains were out I was told to massage the site with a flat hand. In the shower with soap makes it easy. My chest is soft now. Give it time.

  • wanderweg
    wanderweg Member Posts: 487

    Hughope - My plastic surgeon didn't say anything about the drain scars, but did tell me (much later) to massage the incision scars. She suggested using something with silicone in it or a scar cream. I usually massage it when I'm taking a bath.

    MGJ - So when will they take the port out? My port removal surgery is scheduled 2/06. I'm glad to hear your rads are going well!

    MACTAZ - That's great that you had a good time with your friend. That's hard that your husband is anxious about it, but you have to look after yourself right now.


  • kwilli
    kwilli Member Posts: 94

    Hey Ladies!

    I have been reading all the posts and I love the very positive tone from everyone. It’s like we’re walking through a tunnel (the longest effing tunnel ever); and seeing the light of day!

    My bmx surgery went well, no lymph node involvement. I’m waiting to go over the pathology report with my onc. There’s a giant orange-sized lump on one side; going back to the surgeon tomorrow. I told her I was a medical miracle and grew one boob back!! My chest is numb, a bit painful. The incisions look amazing though. They should heal nicely.

    Please keep up the positive words, they’re so encouraging!

    X

  • santabarbarian
    santabarbarian Member Posts: 2,311

    Yay for no lymph nodes!!!! :-)

  • mactaz
    mactaz Member Posts: 592

    KiWilli, so glad you got good results and hope your meeting with surgeon and OC goes well.

    My surgery is on Monday, I’m doing pretty good and just looking to get it over with.

    Benji69, hope you are well, I think you are close to being done with chemo. Let us know the date, we will be celebrating with you.

  • wanderweg
    wanderweg Member Posts: 487

    KWilli - Yay for being node negative! I'm really glad to hear that.

    I went to both the grocery store and walked a mile at the park today with my head uncovered. I'm gradually getting myself used to Sineading all over town.

  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    KWilli—-Nice! No lymph node involvement! That's excellent!

    MACTAZ—I'm sending you positive vibes for a great surgery and recovery!

    Santabarbarian—any news on proton rads? Have you decided on the East Coast?

    I see the new MO on Tuesday. I will ask if I can get my port out then. When I had met with her in December, she said she would order an Oncotype on my tumors. We shall see if she actually did it. I'm not holding my breath.

    Three radiations done. Today it took maybe 3 minutes for rads. Super fast. I just shut my eyes and chant or listen to the music they play. I had my first weekly mtg with the RO, who I like. Not much to complain about after having lived through chemo hell. I made a concoction of oils to slater on my chest. So far so good. My arm isn't swelling, which is good. They expressed concern about lymphedema but I'm wearing the compression sleeve religiously so hopefully I can avoid that.

    My hair is beginning to fill in more in the front but I still have a severe case of male pattern baldness. I also lost 4 pounds after being up 8 pounds. That was a surprise. I guess it's just my exercise and eating veggies again rather than inhaling Costco cheese pizza. My mind is so much more settled when I can exercise.

    I also need rad boosts to both of my surgical scars (mastectomy and inframammary) since they pulled implants out of a boob full of CA via the inframammary incision. Just learned that today.

    Sending everyone a big hug!