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Comments

  • Kattis894
    Kattis894 Member Posts: 150

    I still have my port and they do not flush it at all. They do use it for the Zometa Acid I receive every 6 months. A doctor told me I can keep it for years with no problems. Thought I would keep it just in case since I thought it was comfortable during chemo and if this comes back it is in place. Some might find the port troubling I personally do not.

  • elainetherese
    elainetherese Member Posts: 1,635

    why why,

    I had my last Herceptin in December 2015, and I still have my port. I get it flushed every 8 weeks. That's not a problem since I go to my oncologist's office every 4 weeks to get my Zoladex.

    The nurses always advise me to keep my port because they think it's so handy. My oncologist thinks I'm superstitious for keeping it. I'll think about getting it out once I reach the five year mark.

  • suburbs
    suburbs Member Posts: 398

    Hi all. It seems that every MO has a different MO when it comes to ports. Mine came in handy at times other than chemo; however, in the hospital, they would have to page someone who knew how to access a port. Chemo nurses are pros, but not every nurse is. After completing Herceptin, my MO wanted that port out. The view was that it could cause problems unnecessarily.

    And I second what Coach Vicky said about new comers just starting chemo. TCHP is a tough regimen. Walking when you’d rather nap and drinking water when you’d rather have a coca-cola (a childhood remedy for nausea) is definitely good advice.

    If you post often during this critical time, I hope you find the same comfort I did. I remain eternally grateful for this group

  • whywhy
    whywhy Member Posts: 36

    Thank you Kattis894 & ElaineTherese for sharing your experience! I'll try to keep my port.

  • KBM_219
    KBM_219 Member Posts: 6

    Thanks for all the replies and encouragement. I know it will be a long year of treatment but I am hopeful that she will beat this. I suppose we will know more next week after she meets with the oncologist. I am expecting the first round of chemo to be especially difficult and will hopefully be able to prepare her for that somewhat.

    Perhaps I can get her to join this group.I think the support would help her tremendously

    A couple of specific questions that she asked me about. (1) should she seek a second opinion on the diagnosis? (2) should she ask her doctors for the FISH test?

  • specialk
    specialk Member Posts: 9,261

    young - yay for the end of chemo - hoping you have an easy surgical recovery and rads, and that Herceptin only is easy for you! I would be asking your surgeon whether they are testing margins during surgery to help alleviate a re-excision for dirty margins - some hospitals have equipment that helps with this process. Ask about whether dye or tracer, or dye and tracer will be used for identifying the sentinel node(s), what is the plan if nodal involvement is found during surgery, and what is the plan if it is found in the lab later? Does your surgeon recommend axillary clearance surgery, or is there willingness to radiate only - and what is the threshold for making that decision? I would ask the rad onc about how the planning is done, if your tumor is on the left what measures will be taken to avoid heart and lungs (breath hold or prone position), whether you qualify for short course rads, and will you be covered during rads.

    KBM - what a sweet daughter to be here for your mom gathering info, good for you! I would assume your mom would need chemo prior to surgery since her tumor is larger than 2cm and she has suspected nodal involvement - those are the two most common criteria for doing things in that order - with Perjeta and Herceptin added to one of several chemo regimen choices. I would ask her oncologist which regimen he/she recommends and why. Your mom will likely have a port placed prior to starting chemo. Has your mom had nodes biopsied or is the involvement suspected based on imaging? If no biopsy on the nodes has been done I would recommend discussing doing that at the time of port placement, up to and including, possible sentinel node identification for a true assessment of nodal status prior to the start of chemo. I mention this because having a clear understanding of nodal status prior to chemo is helpful in more accurate staging - otherwise, true staging is not really done with neoadjuvent chemo. Often if imaging is pretty clear the clinical staging is enough to make treatment decisions, but if there is any doubt it can help to have a clearer picture. Depending on what happens after chemo is finished will determine your mom's surgical options, and I would ask if radiation will be recommended - if nodal involvement is suspected I would guess that it probably will be. Might not be a bad idea to have preliminary consults with surgeon, medical onc, and rad onc just so everyone is one the same page going forward. On second opinions, never a bad idea - it is very important to have an oncologist you like and trust - it is a long-term relationship, more so than surgeon or rad onc. On the FISH testing - it is usually done as a confirmatory only if the result form IHC is equivocal, or borderline. If IHC resulted strongly Her2+ it is likely unnecessary, and quite probably not covered by insurance. Conversely, if her Her2+ result was not strongly positive then it may be a good idea to have reflex testing by FISH.

    kat - the sentinel node process is different for everyone in that we all have differing numbers of axillary nodes - with quite a bit of variation. So, a "sentinel node" procedure for you would quite possibly involve a different number of actual nodes than it might for me. The nodes are encased in fat pads and this is what takes up the dye/tracer. A fat pad might contain one node, or ten, and the surgeon can't tell until the fat pad is removed and dissected in the OR. I had SNB with one node on the cancer side, and two on the non-cancer side. I later had axillary clearance surgery (ALND) and my levels 1 & 2 only yielded a total of 12 including the one sentinel removed in the original surgery. That is a low number for a complete axillary clearance - you will see others with as many as 35.

    whywhy - different oncologists have different philosophies regarding how long to keep a port. Mine wanted two years after last Herceptin as this is the most common time period for a Her2+ driven recurrence. Others say you can remove it as soon as you are done with active treatment. Some patients want it out immediately as it is a reminder, others like to keep it because it makes blood draws easier. I actually had mine for 6 years due to multiple surgical complications, but it was not visible and I had no external scar since it was placed under my mastectomy flap. It didn't bother me to have it flushed every 6 weeks - I enjoyed the nurses in the infusions center and had no negative association with going there, but I know it is difficult for others. When he finally said it needs to come out - it is a clot risk - I had an abnormal PET and he changed his mind. It was finally removed in a later surgery after we had confirmation that the abnormal PET was not a recurrence.

  • coachvicky
    coachvicky Member Posts: 984

    Thanks for the detailed response to others, SpecialK. I always learn from your postings.

    I just realized that you are 8 years out from your original cancer removal surgery. What a great milestone!

    Vicky


  • missouricatlady
    missouricatlady Member Posts: 894

    I will be starting TCHP November 7th. I will get my port November 5th. MO told me to take Claritin and Aleve before and after. Use tea tree oil on my fingernails and take ginger or eat something with ginger. He told me to keep Imodium on hand, so I bought that too. I asked him about Magic Mouthwash, and he won't prescribe that, told me to rinse with baking soda. I know to drink a lot of water. If you have any other advice, please let me know, thank you. I will talk to my boss this morning about filling out FMLA paperwork, the nurse suggested I do that. If I don't use it, I don't use it, but if I need it, I've got it. I am a floater at my job, and cover other jobs so we can work a 10-hour four day week. I hope the ladies that I fill in for do not hold anything against me, because we may not be able to keep up this schedule while I have treatments, and it makes me feel guilty. I hope to keep working, because I have bills to pay. My husband, who cuts his own hair with that thing you can buy that you put different length thingies in, has agreed to cut my hair. I don't know what I'd do without him. When I get through this, I hope to help someone who doesn't have the support I have. That is my goal. Thank you for letting me ask these and look to you for support. Many blessings to you for your encouragement. Hugs, Lisa

  • coachvicky
    coachvicky Member Posts: 984

    Remember when I changed my Oncologist?

    My new one is on a mission trip to Africa. Here are some pictures: https://www.facebook.com/photo.php?fbid=2204809466...

    Seeing these pictures make my complaints look small.

    Vicky

  • coachvicky
    coachvicky Member Posts: 984

    Best wishes, Lisa. I think you have a great plan.

    Take a notebook to write in at every appointment, treatment ... . Please don't trust your memory. Write stuff down.

    Remember to move. Find an exercise regiment that will work for you. Even if you feel bad, move your body everyday. Many YMCAs offer a free six weeks class to cancer patients. If you have a YMCA near you, see if they offer one.

    Ask for help and whatever medicines you need. If you find yourself nauseated during treatment, tell your nurses and get the meds to stop it.

    Start a ritual to thank your husband. I wrote mine notes and hid them for him to find.

    Go easy on yourself. Take time for you. If a two hour work day is your limit, accept that. I would like to write "don't feel guilty" but you probably will. I know I felt guilty about everything and looking back it was wasted energy. I believe as women many of us put others first. This is the time to put YOU first. This is your life and you are going to battle to win for you.

    Prepare yourself for a long haul. I don't know if you will have surgeries after your chemo and if you do the healing takes time. If you go on an estrogen blocker, that is usually for five years. It took me awhile to fully understand that my journey to being cured would be about six years from diagnosis.

    Please do not accept "everyone with breast cancer has XXX" or "everyone on chemo feels XXX." It really is different for each of us.

    Ask anything from this group. They will answer and support. They did for me.

    The beauty of this journey is that you will discover who your real family and friends truly are. Some people will say stupid things to you not necessarily in a mean way but they don't get it and you can't fix stupid. Let those people go. Some people will not say or do anything dropping out of your life. Let those people go.

    We have friends who go to Florida from Kansas every year. They drove out of their way to spend time with us. I have a cousin who frequently drove many miles just to "lay eyes on me." We normally don't see each other. A client of my husband's timed encouraging cards to arrive in our mailbox every day of infusion. A neighbor had her son come over and stack our patio furniture any time a storm was approaching. A dear friend of my Mother's stepped up to fill that empty role in my life. Those are the types of people to focus on. Let people who offer to help do so.

    I don't know if you are a person of faith. My husband finally convinced me to have my name on our church's prayer list. For some bizarre reason, I would not tell people I had breast cancer for several months when this first happened. Funny thing is few people at church ever directly said anything. There are three older couples that sit behind us at church. Every once in while, one of women would tap me on the shoulder and whisper something like "got more hair coming in." I just found that funny. Never asked how I was doing. Never mentioned cancer. She just find a way to say she had my back.

    I would not wish this journey on anyone. I would not take my journey back either. I am better physically, mentally, emotionally as I move through this.

    Vicky

  • Kat22
    Kat22 Member Posts: 93

    SpecialK and coachvicky: Just want to take a minute to thank you both. I've gotten tons of help from dozens of people on these boards, but you two in particular have provided so much knowledge, encouragement, and helpful advice. I'm super thankful that you're here. So...thank you.

    MissouriCatLady: Just a couple things: Nutrition drinks (such as Boost and/or Ensure) will become a part of your life. I haven't seen this talked about much, but I know that after 2-3 cycles of TCHP, they became my go-to when the taste buds die and finding something that you want to and can eat becomes a challenge. The drinks help keep your vitamin levels up and the protein is much needed for us. Visit their websites and sign up for emails from them, they'll send you coupons pretty regular. Regarding work: as Coachvicky said, this is the time to focus on YOU! Everyone's different, of course, but I told everyone I work with soon after I was diagnosed. We actually had fun with it, the taboo was removed because I was very open to talking about it while trying not to constantly bring it up. I can't tell you how many times a random comedic comment from a co-worker about being "the cancer patient" picked me up and kept me a bit more positive about the whole thing. Early on, some of them offered to shave their heads for me. I told them "y'all have fun with that, I'm getting a wig." lol (I ended up wearing that wig exactly 2 days. Hated it. Got permission to wear a hat and that's what I've done for months.) Good luck to you, it's not easy but you WILL get through it. Hugs.


  • KBM_219
    KBM_219 Member Posts: 6

    SpecialK - Thanks so much for your reply. Your assumptions are correct - she will have chemo first before surgery. At present they are recommending only a lumpectomy and not a full mastectomy. They are also recommending radiation after that. Her lymph nodes have been scanned but I don't think they have been biopsied so I will definitely have her ask about that. We haven't met her oncologist yet. From what I can tell, she is young and fresh out of an oncology fellowship, which I think could be good or bad. We will see how my mom likes her next week. I will also have to see about how strongly she tested for HER2 and the FISH test

    MissouriCatLady - Best of luck with beginning your treatment next week. Hopefully you will stay in touch.

    CoachVicky - great advice! My mom tends to forget what the doctors say, so I'm ordering her a notebook to bring to her appointments.

    All of your stories are inspiring. Several have brought me to tears. Thankful for you ladies who have already been through this to offer some guidance.

  • mactaz
    mactaz Member Posts: 592

    specialk and coach Vicky, I Ditto the comment about all the advice and help you offer on all the thread you are on. You have been very helpful.

    But I want to make sure everyone on this site know how much I appreciate all the them, they are great and are truly appreciated, I don’t know how I would have gotten as far as I am without it.

  • missouricatlady
    missouricatlady Member Posts: 894

    Coach Vicky and Kat22 and KBM219 - Thank you. I cannot say that enough, it means so much for me to read your posts. I have copied and pasted and emailed them to myself, so I can go back and read them over and over, thank you. I will write my husband some notes and put them in places. He is my rock and I know it is not always easy for him. He never lets me see him crack. I will get some protein drinks and keep them around, I did not think to do that, thank you! What a blessing it is to come here and find such peace at this most difficult time in my life. When I first joined, someone told me to visit this board, even though I am not a triple positive, and they were right. I appreciate all of you very much and you have helped me immensely. Thank you! Much love to you and hugs, Lisa

    Let us all remember Coach Vicky's words: This is your life and you are going to battle to win for you.

  • coachvicky
    coachvicky Member Posts: 984

    Thank you all for the kind words. It was this forum and these women that kept me sane during the darkest hours. I am on a few boards but there is no board like the 3+ women.

    Kat22 ... I was grocery shopping and had somewhat of a meltdown with the "nutrition ordering person." There was NO Atkins French Vanilla drinks. Not one. I could swallow those when nothing else tasted right. The guy said to me something like have you tried the strawberry and chocolate blah, blah, blah ... . I said I am in chemo! He said "I will order you a case or do you want 2 cases?" LOL. When I shop at that store today if only one package is left, I leave it in case there is a chemo patient wanting it.

    Have a great weekend everyone.

    Love, Vicky

  • Kat22
    Kat22 Member Posts: 93

    GREAT story,Vicky! Have a great weekend

    Loopy


  • shelabela
    shelabela Member Posts: 327

    Good morning lovely ladies!

    So many posts to read. First I am sorry to see the new ones here. Breaks my heart. But welcome to a wonderful place. I don't get much time to post so I don't usually respond individually.

    It's been a year since finishing Rads and my last test came back perfect! Yay. But i did find out that chemo somehow has burned my esophagus and stomach lining. So I have bad acid reflux that burns and makes me cough all the time. Small thing but annoying all the same.

    For the new ones : things I took with me to Dr appointments..... notebook, pen, a list of questions or side effects from the last treatment, and a kick butt attitude.

    Not sure if it will help everyone but it helped me. I kept a journal of all the SE, sleep pattern, how I was feeling, how I ate, what I ate, my energy levels, exercise I did, ect. Basically my whole life when going through chemo and I would take it with me everywhere. It also helped me during Taxol I could see a pattern. If that makes sense.

    My hair is growing like crazy. Now I'm trying to figure out if I want to keep it short or grow it long. I've always had long hair.

    I am so glad October is over if I heard one more person tell me that Mammograms PREVENT Breast cancer I was gonna freak out. Damn people get your facts straight.....

    Have a wonderful Saturday! Love and hugs to all

  • Emalyn
    Emalyn Member Posts: 20

    I am having an inner struggle now. I feel I am living partly in a normal community, partly in a breast cancer community. Yesterday I had a herceptin infusion and an echocardiogram. Only two more herceptin infusions and active treatment is over. I’ve done well. My compulsion to give back to other breast cancer patients has led me into “get out the vote” activities. I am needing to do everything I can to be sure affordable health insurance will cover our pre-existing conditions. I am promoting voting for political candidates who I think will protect us cancer patients with our preexisting conditions.

    In the normal activist community, I work hard and do my best. However, I cannot keep up with others. Even though I have come through treatment very well, my stamina is reduced. Some know my story, others do not. The struggle is between my feeling of obligation to do more with my cancer patient feelings that I need to accept this survivor normal that includes some diminished abilities. I tend to feel inadequate.

    I hope all of you will vote. VOTE, PLEASE! Vote for our access to health care. I am not sure I should be saying this in a support forum. But I can ask all of you to vote and I think I need to take the risk that this sentiment might not be okay here. Thank you for letting me vent


  • marionkluges
    marionkluges Member Posts: 4

    Hi again .Im going for 2nd treatment on the 12th. it will be with Cytoxan and doxorubicin which is a red med going into an iv drip. I had gotten sick with the Adriamycin (also red) going in with a syringe at a vey slow pace. was approved for a patch for behind the ear to try and ward off nausea. even though all the nausea drugs they give me it didn't work the first time.  anyway. was wondering in if anyone stopped their chemo to try and just do cannabis oils? I have been researching and find it seems to work. and have heard stories about the good it has done. (I had a 1 cm tumor,had lumpectomy in aug, nothing spread). so please let me know your answers.

  • ingerp
    ingerp Member Posts: 1,515

    Emalyn thanks for the encouragement (although I hope it’s not needed here) and congrats on being almost finished. I still have six months of Herceptin but don’t think about it much. Are you doing anything to celebrate? I’m noodling around with a vacation after I’m finished. :-)

  • coachvicky
    coachvicky Member Posts: 984

    Emalyn Your wrote: However, I cannot keep up with others. Even though I have come through treatment very well, my stamina is reduced. My Nurse Practitioner said that the triple positive treatments are the hardest because they are so lengthy. She also said that a year out of infusion treatment I would see my pre-cancer energy begin to return. Go easy on yourself. Take time to heal.

    And, yes, I always vote.

    MarionK ... there is an alternative treatment forum in the BCO Community. You may find your answers there. I elected chemo and everything my MO threw at me.

    shelabela, Glad you wrote. I like your shorter hair. Sorry about the burned internal lining. If I see one more pink ribbon I think I will throw up. How about sending that money on pink stuff to research? However, when a true friend / real family does something pink I just smile. No one understands until you have had cancer. It has been this year that all the pink bothers me. Don't know why it is different now but it is.

    Vicky

  • elainetherese
    elainetherese Member Posts: 1,635

    shelabela,

    Sorry to hear about the reflux, but happy to hear that you're otherwise doing well. I'm with you on Pinktober. My local newspaper included whole-page sheets that we're supposed to put in our window to remind people to get mammograms. Ugh.

    marionkluges,

    There is no evidence that cannibas oil alone can cure triple positive breast cancer, no matter how small. However, some women do use cannibas oil for side effects of chemo and hormonal therapy (e.g., insomnia).

    Here is a thread from the alternative board you may wish to visit:

    https://community.breastcancer.org/forum/79/topics/817030?page=2#post_5300830

  • elainetherese
    elainetherese Member Posts: 1,635

    Jumpship,

    I'm on Zoladex, which -- like Lupron -- is an ovulation supressor. Other than osteoporosis (partly caused by Aromasin), I really haven't had any long-lasting side effects.

  • shelabela
    shelabela Member Posts: 327

    Vicky I agree, when my family brought out the "pink" clothes last month I just smiled at them. One of them told me that they bought me a shirt that said "I had breast cancer, but I am now cured!" I just looked at like really....... she told me a portion of the cost went to breast cancer research. When I asked what organization they named one I've never heard of. Ugh I just walked away. Geez people you wanna help give me the money. LOL.

  • coachvicky
    coachvicky Member Posts: 984

    shelabela Cured? Really? I guess that they meant well with the shirt for you.

    Some of my family and friends can't get the 5 year oral treatment and six month injections.

    I may be "cured" in the sense the known cancers are gone. However, I don't think I will ever be cured of breast cancer in the awareness that the effects last forever emotionally. That is somewhat a great effect to me because it causes me to live the fullest each day.

    Vicky

  • jstarling
    jstarling Member Posts: 137

    if the grocery is out of Chocolate Boost....Steak N Shake classic milk shakes work. Just sayin'


  • magari
    magari Member Posts: 335

    Hi, all. Adding to the thanks to Special K and Coach Vicky, who, along with so many others on this board have helped me immensely over the last year.

    I have my FINAL Herceptin/Perjeta infusion in a couple of weeks, and although I've been glad to have a port, I am also excited to be scheduled to have it removed the following day!

    I also got my hair cut and colored over the weekend. I saved about half of it via cold capping during chemo, but had enough of a thin spot on top that I've been wearing a wig for the past 6 months. It's still a bit mullet-y, but I can fake a short wavy bob and co-workers have told me it's cute.

    Although I still have at least 5 years of Arimidex in front of me, I am glad to be moving forward and feeling like less of a "patient" on a day to day basis. Much to give thanks for this year....

  • xYoungandScared
    xYoungandScared Member Posts: 21

    Wow, SpecialK thank you SO much. Everything you provided me is so incredibly helpful, and I'll make sure to ask all of this on Wednesday. Really appreciate all of the other advice I received from everyone, as well as the congrats! Thank you everyone. I hope you all have a great week!

  • laughinggull
    laughinggull Member Posts: 522

    Ladies, I confess: can't possibly keep up with so many stories and answer each one individually. But I have been reading and I echo the thanks to SpecialK and Vicky. Thanks for being there, girls. Your post are so informative and uplifting and you always make me smile. Never miss them.

    And Shela I vote for you keeping your hair short-ish, you looked terrific in that pic you posted a while ago with a flower in your hair.

    MissouriCat, you got this, girl. You have everything ready. I showed up with a thermos full of ginger tea the day of the first infusion, expecting to die of nausea right there, but didn't have any until a few days later. Still, I drank so much ginger tea that day that now I can't smell it -or even look at the box.

    Young I was disappointed with my response to chemo but there is only one way: forward!

    Tomorrow, Tuesday, I will have Herceptin+Perjeta, only 4 more to go after tomorrow's treatment. The day after, i.e Wednesday, I am having surgery -prophylactic mastectomy, removing my non-cancer breast. My breasts were both extremely dense and cancer didn't show up either in mammograms or MRI for my cancer breast so I don't want to keep this one. I will also get my port removed -it's on my breast and it would have to be placed in a new spot, with a new scar- so I will get the 4 remaining Herceptin+Perjeta treatments by vein -I have "good veins". This is my fourth surgery in a year and I am totally chill, didn't even make a list for anything. Tomorrow night, when I am back from the swimming pool (and after checking on the election results)I will pack a pair of pajamas, my kindle, phone and charger, and head to the hospital in the morning. And the day after, i.e. Thursday it will be my birthday, and I hope they let me come back home -last time I was released the day after surgery. I asked my husband to get me ice cream cake as a birthday gift, from a nearby ice cream parlor that makes fantastic ice cream cakes. Sooooo looking forward to celebrating my birthday at home, with one less thing to worry about -future mammograms- and as much cake as I want, even if I get sick of it!

    I will ask my oncologist tomorrow to look into getting Nerlynx for me once I finish Herceptin+Perjeta. I will also ask if they will test for hormone and her2 receptors if they find cancer in my prophylactically removed breast (my guess is that the answer is yes, even if they didn't retest my cancer breast when I had the first mastectomy); and I have been having tailbone pain that of course I think it's a metastasis (a few times a day) so I will ask about that too.

    That's all on my front ladies. Best wishes to all!!!!

    LaughingGull

  • ingerp
    ingerp Member Posts: 1,515

    That's quite a week, Laughing. Best wishes that all goes smoothly. And happy birthday!!

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