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Starting chemo July 2014

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  • magdalene51
    magdalene51 Member Posts: 2,062
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    *blowing you a kiss*

  • Hemmie
    Hemmie Member Posts: 3
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    Hi guys. Guess I will be joining you lovely ladies as well. I've bee lurking on this board for a few months but haven't really contributed until now. Chemo is the part that scares me. Got through the DX and surgery (BMX) fine. Some minor reconstruction issues. Chemo is seriously freaking me out.

  • kpmacmill
    kpmacmill Member Posts: 69
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    Hi Hemmie,

    Sorry to have to welcome you to the club. I also have been freaked out since I found out chemo may be a possibility. I've had a lot of time to absorb it now, and I feel prepared, but still scared and sad about it. I absolutely love the facility, the doctor and my nurse (who will be my nurse for every treatment). I changed doctors because I didn't feel comfortable with the first one, and I am so glad I did. I got to meet my nurse on Tuesday and she gave me a tour of the facility, and went went over everything - each drug I would receive, how long it would take to infuse, the blood work, the SEs, what I should bring, what to eat, what to drink. She was very supportive of my plan to use cold caps to save my hair. She said "this is your treatment and I'm here to support you in any way I can." So, I feel like I am in good hands, but, of course, still can't even breathe sometimes when I think about it.

    Hugs,

    Kelly

  • Blownaway
    Blownaway Member Posts: 662
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    I'm new here but am sure to start chemo in July. I've read on some posts that a port makes things easier so have emailed my Oncologist asking if I would benefit from having a port in place. I KNOW NOTHING AND AM IN THE DARK RIGHT NOW - but hope to learn quickly. Right now I am at work but wiil post my story asap. Sorry but I dont know all the abreviations yet. 

    UPDATE: Just received reply from the oncologist nurse and now I am really confused. She replied about wheather I should get a port "It is up to you, some people get them before chemo and some people get them after". Why would a port be needed after chemo? I told her to ask the doctor what he feels is best for the treatment that he is planning for me.

  • Blownaway
    Blownaway Member Posts: 662
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    Love this one - it has a vintage look to it.

  • magdalene51
    magdalene51 Member Posts: 2,062
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    Well, I'm in the final countdown phase. If anything, dreading it more than ever. I start Tuesday. I know the facility is absolutely top-drawer, but they didn't offer me "Chemo 101" or even a tour. I thought the oncologist said he was going to give me info about the drugs but he didn't and I had to call to even find out what I was going to get. So I'm disappointed with that, and I'm going to let him know when I see him Tuesday. DH is going with me but I don't even know if he can stay with me or what. Sucks.

    I've been gathering stuff here & there: lemon drops, ginger candies of various kinds, ginger ale, etc. But I have no idea what restrictions I'll have, for instance with vitamins & herbal supplements which I take a lot of. I heard somewhere that BC patients should never have vitamin C, but I can't find it now. My cousin juices for me and puts liquid C and potassium in the juice.

    I do have a port installed, and it is so uncomfortable, though I'm sure preferable to IV. It hurts to reach across my chest, or lie on my side. The incision glue is almost gone. My BMX incision, on the other hand, still is just solid glue. Anyway, they haven't said anything about the cream to put on the port skin to eliminate the pain of accessing the port, so what? They do it different? Idk what to think. I'm just anxious I suppose.

    I've done nothing about head coverings or wigs, I want DH to help me with that and he's just so busy supporting me that I hate to ask. Maybe this weekend.

  • Hemmie
    Hemmie Member Posts: 3
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    Kelly - I've tried my best to be prepared in the sense that whatever physical effects I should have pretty well covered. My issue is the emotional variety. My support people are not following this preconceived notion I had about who was going to be what, and what I could expect. Imagine, the nerve of them Winking So strange that this is what is really bothering me. I do not want to do chemo at all, but I know I have to. Good for you for finding a team that you are comfortable with and trust. I think that makes a world of difference. I have been fortunate to fall into a group of doctors that I trust completely and am very comfortable with. I wouldn't change a single one.

    Blownaway - sorry for the circumstances that bring you here, but, on a selfish level, it's good to have another person to talk to. I will be having my port installed (can't think of the correct terminology) on Monday. Very happy to be having that done - three of the veins I had in my "good" side have collapsed. I can't even imagine what chemo would do to what's left. I can let you know how that goes when it is done.

    Mags - That's how I was with surgery. The closer it got to surgery my anxiety skyrocketed. I'm really surprised they didn't to some sort of orientation. Maybe they could get you in before Tuesday just to go over things. DH should be able to stay. At least there were family members present with the chemo patients when I went today. I read the thing about vitamin c somewhere too but I've never found it since. I take a multivitamin, c and e. My doctor is aware and hasn't told me not to. I would definitely check with the doctor though. Are you sure your pain is port related and not from the surgery? The only pain I ever had was across the top of my chest. I had my surgery at the end of April and have just gotten to the point where I can lay on my side comfortably in the past 1-2 weeks. I don't know. I think the topical pain reliever is lidocaine or something right?

    Well, good luck to you ladies, look forward to talking with you Happy

  • kpmacmill
    kpmacmill Member Posts: 69
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    Blownway - I bet the nurse meant you could get a port after chemo starts. That's what my onc said. I don't want a port and I have good veins now, but I have to go through 16 rounds total between AC and weekly Taxol, so if they don't hold up, I will have to get one put in at some point.

    Hemmie - I too was surprised by the reaction of my friends, family and co-workers. They have completely overwhelmed me with support, I almost can't take it. I keep getting choked up thinking about how kind everyone is to me, as I never expected it. I have always felt like people are generally pretty selfish, but I have totally changed my tune now. It's pretty sad to me that I expected most people to be indifferent, but now my faith in humanity has been restored.

  • Blownaway
    Blownaway Member Posts: 662
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    Hi ladies,

    As I said in prior post, I will be starting chemo in July - my story goes like this:

    In March 2013, it was all over the news media that the latest recommendation for mammograms was for women to have them done every 2 years - so I skipped a year.  Fast forward to March 2014, had my mammogram and was called back for additional "close-up" images of my left breast. I was told right then that if I could stay longer, the radiologist wanted to do an ultrasound - I stayed on, after which I was asked if I could come back early the next morning for a needle biopsy, they would open early just to fit me in because the radiologist was going on vacation the following day.  I was starting to get that sinking feeling, but I had done all this about 5 years before on the right side (without all the hurry) and after a lumpectomy it was proved to be benign back then.  Anyway, back to March 2014 - my family doctor called me at work a few days later and told me that I have estrogen receptive breast cancer approximately 1 cm that was in situ and another smaller tumor that was starting to spread and to immediately stop taking the Premarin (estrogen only) that I have been on for the last 15 years.  News flash - Can you say HOT FLASH!  Anyway, I contacted the best facility in the country (right here in the Houston Medical Center) and after lots of red tape and dotting i's and crossing t's, I was in like Flint. I had the lumpectomy (they used glue which I seem to be allergic too so it took extra time to heal).  Also, I did not understand in advance that an additional incision would be made under the arm.  I thought the surgeon could remove a few lymph nodes from the same incision as the tumor.  I have to say the underarm incision was very painful for about 3 weeks - it felt as though I had been burned and then just suddenly stopped hurting one day.  The pathology report came back stating that the surgeon did not get enough clean margin around the tumor, so I had another surgery to take a little more breast tissue.  I consider myself lucky because, other than the 2 little incision marks, you can't tell anything was done at all - I am still intact (oh and by the way, I have breast implants to work around).  I was under the impression that I would go forward with some radiation and take an anti-cancer pill for 3-5 years and would be home free.  NOT SO FAST.... Last week, I saw the oncologist for the first time (thinking it must be time to start the anti-cancer pills) and he told me that my cancer was HER2+ and that I would be having chemo before radiation and pills.  That's why I call myself "Blownaway", you could have knocked me over with a feather.  Such a huge ordeal for a couple of 1 cm blobs! As it turns out, the oncology department at the hospital wants to join in on a new trial/study that is being done in other cities and I (and another lady) exactly meet their criteria for the study. WOW! They should be paying me! The trial seems to be for Stage 1, HER2+ breast cancer in someone who has never been treated for a cancer and what else I don't know because they can't tell me anything until they get approval and are accredited...blah, blah, blah.  I have to say my oncologist has an accent and I only pick up about every other word or two, so I take someone with me each time who is better with accents.  That's all I know - it seems as though I have been on a "need to know basis" throughout but maybe that's my fault for not doing any homework.  I am trying to rectify that now by learning from all you ladies (I have emailed my oncologist asking about a port since reading some of the posts).  I have no idea what the chemo meds or schedule will be - he did tell me I would lose all my hair (head and body) and that he would give meds to battle side effects. He has already given me Effexor to help with hot flashes - I've tried taking it twice but it kept me awake all night - I will keep trying it though.  I am taking each day as it comes but keep getting surprises due to my own ignorance of the situation I find myself in.  Since I haven't let myself dwell on it, I haven't learned very much - but that has to change - I will now start to get more involved in my treatment.  Sorry such a long narrative but I hope that someone else will read this and realize that you can't be passive or in denial.  You have to learn everything you can and take an active role in your treatment.

  • Blownaway
    Blownaway Member Posts: 662
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    kpmacmill - Were you told that you could not "be stuck" or have blood pressure done on the side with the cancer because of lymph node removal?  I just keep thinking that all those IV's and blood draws on the right side may be a little much.  Also, I have to agree, I have not felt close to tears at all until friends/family get emotional  and then I feel like shedding tears with them.  I need them to be strong (and dry) to keep me that way.

  • kpmacmill
    kpmacmill Member Posts: 69
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    Blownaway - I was not told anything about not being stuck on the side in which I had lymph nodes removed. Sounds like your doc believes that any trauma to that side might further compromise your lymphatic system? I never thought of that. One of the items on my nurse's checklist when I met with her was to check my veins, since she will be the one starting my IVs. All she said was my veins were good, for now (although chemo drugs could contribute to damaging them) and that they start with the hands and then move up to the antecubital region (front side of forearm) if necessary, no mention of using only one side. I was hoping they could use my feet too since I have veins popping out of them like my hands (really attractive LOL), but no dice.

  • Hemmie
    Hemmie Member Posts: 3
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    interesting, I was told I could never have blood pressure or needles (including tattoos) on the side they removed lymph nodes. 

  • CoyoteNV
    CoyoteNV Member Posts: 286
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    It's been a few days since I was online and there are new voices here.  I had a day in surgery on Thursday when my chemo port was reinstalled.  The hospital is in another community an hour and a half away.  My doctor wanted me to stay overnight locally (just in case) so it takes 2 days to do a same day surgery.  My veins don't support any IV very well - and the huge bruises from this experience prove it - so would never handle the long haul of chemo.  Age has something to do with it, but  I would rather say that I'm just delicate.  It is sore. Last time, it was put in when I had the mastectomy, so I couldn't say specifically that it was troublesome.  I think I've just had too much slice and dice in the last two years, so my chest area is getting hyper-sensitive. Kind of like water drip torture. 

    The cream they gave me last time was lidocaine and prilocaine.  I put it on the port site and covered it with press and seal wrap a hour prior to the infusion.  I couldn't feel the needle at all.

    Yes, forever more your blood work and blood pressure should be taken on the arm on the side that has not had lymph nodes removed.  You will have to tell nurses and medical techs that every time. 

    My new oncology clinic does the Chemo 101 session. I had it last week and it was very helpful. They have "navigator nurses" to provide information about each patients protocols and answer questions.  She gave me some notebooks that were published by LiveStrong and some American Cancer Society Booklets about Nutrition and Chemotherapy. I think those can be found online. I read those and picked out specific things that I decided would be helpful to me and then built my own notebook.   I took a lot of the hints found on this site about dealing with SE's and put them in my notebook.  I included pages on taking the nausea meds and built tables and schedules to help my caregivers care for me.  The timing of those meds can be rather confusing.  

    I did not do so well last time, and had to quit treatments prematurely. I am determined to make it through all six chemo treatments, so I need to get control over the side effects.  I might be taking neulasta if my blood counts plummet again.  I will definitely be icing fingers and toes and working to minimize neuropathy.  I don't care about my hair falling out. Wigs, scarves, and hats are my friends.  July 10th. This time I will be ready for the fight.


     

  • Blownaway
    Blownaway Member Posts: 662
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    Coyote - So sorry to hear that you are revisiting your previous experience with chemo. I hope you do better this time around. Are you just starting over or did your cancer come back? Mine is HER2+ so I have to go the chemo route. After reading many posts on this site, I asked for a port. I believe it will go in some time this week. Also bought my first wig this past weekend.  Hubby says I look the spitting image of Holly Hunter in it. Oh well, we cant all be Angelina Jolies. 

  • Blownaway
    Blownaway Member Posts: 662
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    Hemmie - Thats what they told me even though the surgeon only removed 2 axillary nodes. Were you told how many were removed? I have read that its not such a big deal unless 5 or more are removed.

  • Blownaway
    Blownaway Member Posts: 662
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    Magdalene51 - I read on another post that the cream is called Lidocaine and/or Prilocaine. I also read somewhere that only a certain needle shoild be used to access the port. It starts with an "h" but now I have forgotten the name of it.

  • Blownaway
    Blownaway Member Posts: 662
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    Kpmacmill - Apparently there is a risk of developing lymphademia in the arm where lymph nodes were removed. The more removed, the bigger the risk. 

  • magdalene51
    magdalene51 Member Posts: 2,062
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    Blownaway, the port that I have is accessed by a device from the same company which latches on to the port, as I understand it. 

    So, went & had a mani/pedi from my favorite folks this afternoon, and the sweet Vietnamese lady gave me a hug and said she'd be praying for me every day. The shop owner said if I continue to have the gels done I shouldn't have nail problems and reassured me that the utensils are sanitized but if I want to bring my own they'd use them. 

    So I've been gathering my supplies:

    image

    Ginger snaps, candied ginger, cream of wheat, ginger ale, bandanas, and the sweet cap from squirrel (thanks again, squirrel!); not shown, lemon drops and tissues. 

    "The condemned man ate a hearty meal." That's what comes to mind with this, my last pre-chemo dinner:

    image

  • hholmy
    hholmy Member Posts: 1
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    Hello everyone! I I'll be joining these boards with lots of questions and concerns, I'm sure. I still feel a bit like a deer in the headlights...taking it all in as it comes. I will beginning chemo the end of July, I think. I just had lumpectomy and 17 nodes removed on June 24 wnd will meet with surgeon and oncologist on July 10. Trying to be as prepared in advance as much as I can...anxiety is pretty high but am keeping it pretty much to myself...don't want to overwhelm my sweet family just yet :) I greatly appreciate your wisdom, honesty and everything you all have to offer! I am very interested in the cold caps for head and fingers...hair loss I can deal with...the neuropathy is something I would really like to keep in control if possible. Any thoughts on those issues would be so appreciated!

  • CoyoteNV
    CoyoteNV Member Posts: 286
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    Blownaway: It does indeed blow you away.  Mine is a local recurrence in the lymph nodes.  I feel fortunate to have an opportunity for a do-over as it could have been a full blown Stage IV!  Personal opinion says the port is a good idea - even if you have to go back to surgery to get it put in.

    hholmy:  I'm sorry to hear that you are here with us, but please know you are not alone.  Each of us have bits and pieces of information that we can share about the trip ahead.  Everyone of us will experience something unique to us and our specific situation.  I even expect this time to be different from when I went through this two years ago. July 10 is the first treatment of this time around. But I'm sure we will have certain experiences in common.

    Your doctors and you will make the decisions about what's best for your treatment.  It is hard to wait, but the time between now and July 10th will allow you to search this board for answers, about dealing with treatment options and side effects. - both in the formal information sections of the board and in the discussions. What's important about that is when the doctor asks, "Do you have any questions?", you will have had some that have been answered or some to ask.  BTW: I definitely agree with you about the neuropathy.  That is something to try to avoid.  My doctor says communication with her about that issue is vital.  

    mags1: I'm wishing you an easy time tomorrow and minimal SE's.  Let us know how it goes for you.

    Update from/about me.  My port surgery is healing without incident.  I had a hair cut today - about and inch and a half long and spiky with blue tips (I have naturally white hair). It gives new meaning to being a blue haired lady! Winking  I painted my nails cobalt blue to see how it works (Having read the suggestion on the site that says dark polish helps save nails - something about UV exposure).     

  • kpmacmill
    kpmacmill Member Posts: 69
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    Good luck tomorrow Magdalene51! I hope you were able to enjoy your dinner.

    Hholmy - I'm trying the cold caps for my hair, and looking into icing hands and feet when I start Taxol. I'll share any info I find.

  • magdalene51
    magdalene51 Member Posts: 2,062
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    Right after I posted above, I made a post on another wall that hit the automatic spam filters and I got banned for 10 days. I appealed the ban since I know what I said (what I said was "Me too.") I appealed to the moderators compassion as I knew you would all be upset if you didn't hear from me and you'd think I was having horrible SEs for 10 days. A while ago I got an email that I was unbanned and reinstated. So big whew.

  • Blownaway
    Blownaway Member Posts: 662
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    Hey Mag I wish you all the luck and heartfelt wishes that you will be fine next time we hear from you. I just got word today that I will be right behind you. The trial/study did not get approved so I will be getting a port and immediately afterwards something called FAC whick I understand is short fot 3 drugs. Blownaway again - wasnt expecting it so.soon. So glad that I  am not alone in this. 

  • magdalene51
    magdalene51 Member Posts: 2,062
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    Hugs, blownaway. What cocktail are you going to be getting? We'll just hold hands through it, virtually. If I can do nothing else, I can post a few words from my phone.

  • Blownaway
    Blownaway Member Posts: 662
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    Coyote - My port is going in Thursday and I do my first infusion right afterwards. Did not know this until this afternoon. Hope you kick it this time. Cant imagine being revisited with this.

  • CoyoteNV
    CoyoteNV Member Posts: 286
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    Blownaway: Wow! That's amazing. I was told that there is a way to put a port in and use it right away but wow - same day. (I opted to have my surgeon do it.)  You might want to check the side effects to see if there is anything you need to have on board before Thursday.  I think nausea is one of them, but your dr. should have prescriptive meds that help counter that.  I wish you well. 

    The revisit thing - yeah - it's a bummer.  I just hope I can do a better job of dealing with the side effects - so I can manage to have every treatment.

  • JoeysMommy
    JoeysMommy Member Posts: 64
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    Hello Everyone..  I will begin chemo as well in July...  My first treatment will be July 16th.  I wish everyone here strength and courage and the strongest spirit to fight through this journey with determination knowing none of us are ever alone :o) This is all new to me as well and came at a horrible time in my life.  I had my lumpectomy on May 19th and lost my Mom on May 26th to Lung Cancer ~ I have every intention of Fighting Like A Girl and winning!!! ~ I have an amazing 10 year old Juvenile Diabetic son who is the love of my life and he needs his Mommy strong and courageous just as he is ♥

  • magdalene51
    magdalene51 Member Posts: 2,062
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    Welcome, JoeysMommy! We wish you didn't have to go through this but if you must it's good to have these awesome ladies to hang out with and share experiences. Do you know what your chemo cocktail will be?

    I am starting my first round in a couple of hours. Had a big breakfast and just hanging out waiting for time to pass till we leave for the clinic. See above  for my pic of my chemo essentials. Of course I didn't get everything in the picture, but I figure I'll have to adjust what I consider "essential" after I have some experience.

    You and I were 2 days apart on surgery; I could have opted for a lumpectomy but I'm glad I didn't as they found cells in the chest wall and also in the right breast. I think I've recovered pretty well from the bmx but I'm not real happy with the lumpiness, I had hoped to be FLAT. And I'm not. Hate the thought of going back for a second surgery to get what I should have gotten the first time, as I told the surgeon I would not be reconstructing at any time. She may have left the extra skin to give room for later recon. Not gonna happen. Much happier with flatness after a life of DDDs.

    JM, I lost my mom 10 years ago in February; it is a loss whose impact diminishes perhaps with the years but is never completely gone. My condolences to you and your family on your loss. 

  • JoeysMommy
    JoeysMommy Member Posts: 64
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    Hello Mags,  Yes I will be having dose-dense Adriamycin, Cytoxan one session every two weeks for 4 sessions followed Taxol every week for 12 weeks then radiation and tamoxifen.  I have already done the CT &  Bone scan and the Echocardiogram.  I have consult appointment July 10th for port and will have procedure on the 12th.   I am looking forward to next summer when all of this is behind me :)  It is all a bit overwhelming but I am strong and determined to get through this as best as I can :o)  Thank you for your kind words regarding Mom :)  Good Luck today, I wish you a peaceful painfree journey :)

  • magdalene51
    magdalene51 Member Posts: 2,062
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    image

    Deep breath.