Starting chemo Sept 05

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  • Analemma
    Analemma Member Posts: 1,622
    edited September 2005
    Hi Ladies,
    I'm from the June group, and just about to finish chemo. I was scanning some of your messages as you are getting started, and wanted to mention (maybe someone did because I didn't read them all) to be sure you suck on a popsicle or ice during the 20 minutes or so of the AC "push". This will constrict the capillaries in your mouth so the AC can't settle there, and will prevent mouth sores. I never had any problems with my mouth, and my nurses always kept popsicles just for the AC
    Brenda

    will complete 4th taxol Sept 19, 4 AC done June & July. Next is rads!
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Dear Bubbles and HorseWoman,

    Glad you found us, though hate that you needed to. As the group pollyanna, I have been particularly lucky with my first round of A/C. Now on day 6 with decent energy, little nausea, and finding the concentration to return to work in bits and pieces.

    I am feeling particularly blessed to have my medical team; wonderful caregivers who have made sure that I know what is coming and how best to prepare for it.

    Take care,

    *susan*
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  • jlpd
    jlpd Member Posts: 54
    edited September 2005
    Susan...I'm glad it's going well. Did you find out if you were having an allergic reaction or was it acne?
    To all...I am so glad to have found this site...I go back to onc on Wednesday to make sure I have healed enough from my mastectomy...and I think I have, with the exception of some fluid that may need to be aspirated. I now feel that I am armed with a lot of questions, based upon what all you have told me--along with all the other topics posted. I want to be as prepared as I possibly can be...I don't know if they just didn't tell me about some of the medications or if my head has been spinning since this all began. I know one thing...I have too much going on in my life right now, so I'm going to start writing everything down! I'll keep you all posted. Thanks so much! Janet
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    It appears that I had old-fashioned acne. I have been using a Neutrogena acne wash that my daughter left in the bathroom shower, and it has worked reasonably well.

    Best of luck at the Onc on Wednesday. I agree, this web site has been invaluable to me. So many things I would not have considered without reading the Chemo-Months that precede us.

    *susan*
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  • mom2mcco
    mom2mcco Member Posts: 11
    edited September 2005
    Susan -

    Hey it's Anne Marie - I also have had terrible acne and I started my chemo on 9/1. It seems to finally be getting better I have been washing with a very mild soap.

    I have another question - for those of you on A/C how is your hair fairing. Knock on wood I saw a few hairs fall out the other day but haven't really noticed anything else yet.

    I am finally feeling like myself again. I cleaned very good over the weekend. I was put on an antibiotic on Thursday for five days because why white count was really low and I am not sure if this is why I feel better but whatever it is I am glad to feel back to myself a little bit. Take care and hope everyone else is doing well.

    Anne Marie
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Anne Marie,

    It is so good to hear that you are feeling better! Sorry about the acne, but it makes me feel better to know that I am not alone with this silly side effect. Like I don't have more important things to worry about!

    Today, I am running a small fever. Obviously, I am keeping an eye on this, and keeping to myself to reduce the risk of getting an infection. Guess I will not go to vote. I don't think a large urban high school is the right place to be today!

    I am on Day 7, and still have my hair... well all the hair I haven't already cut off. I haven't made my appointment to have the rest cut off yet for some reason. Not ready yet, I suppose.

    Hope all are doing well.

    *susan*
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  • Junebug
    Junebug Member Posts: 1
    edited September 2005
    Hi Peg,

    My advice to you is to go with who you feel comfortable with, usually they turn out to be the best. I too live in the suburbs of NYC (in NJ) and interviewed 3 oncologists, one in the city at a big hospital which is where, previously I would have thought anyone who didn't go to the city was nuts. However, I just was not all tht confident in her or comfortable. I wound up using an oncologist in Princeton NJ about 20 min from where i live and I am very pleased that I did. Especially when there were medical problems in the middle of the night or late during the day. The last thing I wanted to do was drag my sorry old butt into the city. Instead, there was always someone available to drive me to the hospital in Princeton or his satellite office that turned out to be only 8 mins from my house.

    All in all, if you have a standard textbook treatment like I did, go with who you are comfortable with.

    I hope this helped.

    Hugs to you
    JunesGirl
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  • jewelz
    jewelz Member Posts: 4
    edited September 2005
    Deja vu all over again! I was in the March group; did 4AC dose dense and started having allergic reactions to the Taxol after tx #2. So no more Taxol for me and my surgery date was moved up to July 13. Mod. rad. mastectomy, 2/8 lymph nodes positive, 4 additional multifocal tumors found. Damned glad we went with the mastectomy...

    So now I start rads AND chemo on the 19th. Will be taking Xeloda, an oral chemo (form of 5FU) that is usually prescribed for metastatic breast or colon cancer.

    I've got about 1/2" of hair so I'm hoping that I'm not one of the few that loses hair on this drug!

    best,
    jewelz
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  • skibug8
    skibug8 Member Posts: 7
    edited September 2005
    Hi,
    I have survived my first chemo. Right now am suffering with painful constipation.
    however, I got good news today. My bone scan and Pet scan were both clear!! I go to Dana Farber for a consult Thurs but am less anxious since I got this report today.
    I am trying to choose a wig. Went yesterday to a place recommended by my cousin. It was so so. I'm going ro call another person tomorrow. Good luck to everyone starting chemo this week.
    Diane
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Diane,

    Well, I almost feel like meeting you at the Dana! I had wonderful success right next door at Beth Israel for hair. Go to the Shapiro building, 9th floor to the Windows of Hope Shop. I can't tell you how comfortable they made me, and the prices were non-profit and well within my insurance allotment. [The MGH shop is good too, but I went without an appointment and there was no one to help.]

    This was not my first shop, but it was my last. If I can be of any use, please email me.

    Hope that your consult gives you whatever information you seek. And congratulations on the SCANS!!!!!

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Jewelz, So you are going to be a cross-thread girl? Welcome! I have to admit I have read most of your blog, and what a journey you have had.

    I especially hope that you are able to get to the support group that you mention.

    All the best,

    *susan*
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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Hi everyone

    I had my first chemo yesterday, and I felt like I had bad flu when I got home, my head was very achy, so I didn't do much all day, just watched a couple of movies.

    I'm keeping up with the meds, water and mouthwashes, so far so good.

    Good luck to all you ladies having chemo this week.

    Tina....any news yet about when you start chemo..thinking of you.

    Take care

    Maxine
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Maxine, I do hope that your week post-chemo goes as well as mine has. I wasn't able to 'do' anything for a number of days, and with the steriods I certainly couldn't follow a TV plot!



    I believe that Cheryl and Bubbles start their chemo tomorrow.... sending them both all my best wishes. Maybe they will stop through today and let us know how they are feeling.



    I must now try to do some work. I have no income for the past few weeks, and the IRS wants their quarterly taxes!



    All the best,



    *susan*
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    Hopefully....chemo to start next week. They they should have everything they need to better treat these beasts!

    I found out that I should have an appointment next week wednesday or thursday and they may schedule my chemo right after seeing the doc.
    Tina

    (PS. If I am LUCKY I won't be pushed into the october group! I just feel like they are being so slow...but I know they need the er/pr and her2 information.)
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited September 2005
    Hi y'all. Susan thanks for remembering when we all start, i feel loved!



    I start chemo tomorrow unless they change it because I have now decided to go dose dense. Also, I talked to my fourth onc yesterday (i am consulting with oncs outside my health plan to be sure to get the care i need within my health plan) and learned that I really need to dive in and get 4AC and then 4 Taxol dose dense. Seems alot with my node negative, Grade 3, triple negative type of cancer. I was only going to get 4 AC.



    But this will reduce my chances of reocurrance by nearly 21% instead of only 11% with just the 4 AC alone. Darn, I just have to do it. Plus my tumor had many assorted cell types mixed into one. If AC does not wipe out everything the Taxol will!



    I got two very cute wigs yesterday, one short one and one longer one. They are synthetic but look very natural, and the short one is the same color as my light brown hi-lited hair is now and the longer one is similar but a tiny bit different color. I can be "different women" to my husband.



    SEX: Last night i felt angry and bummed thinking that sex might be different or non-existant during or after chemo. I pouted and told my husband he had only Wednesday to "get some" since I may not want it again for a long long time. (sex has always been more important to me than it has to him) He said "Sure we can do it tomorrow, Is that all you are worried about?" and I told him "No, that is only one of 100 things I am worried about here". I am still grouchy today. Hope I can "get some" tonight to keep me going for the 4 months of chemo......! Man i hope i keep a relatively strong sex drive after treatment is over. Of course if my drive goes down some then I will finally match my husband! Just one of my many fears, most of my fears revolve around what side effects are lasting with chemo and I think i need to relax and get over these fears NOw! This morning my H told me to "feel whatever I want to feel and that it is OK no matter what i feel" I am lucky he loves and accepts me.



    You are all so brave and we will all get through this together!



    I should write out my last ONC's treatment protocol. She was the 4th ONC I saw. I learned lots from each one. This onc sees my Dad for his Multiple Myeloma so I know her well and she is really good.



    She wrote all of it out for me so I can then "break it" to my HMO and somehow push them for these things I will need.



    We do not need to suffer!



    I have also done over 100 hours of research myself and am trying to learn as much as I can to help myself get thru all this! Maybe i have done too much research!



    Maybe you guys can relate to some of this info regarding your own treatments. Every onc may order different stuff so yours may be different.



    For me, the regieme will be 4 DD AC followed by 4 DD taxol. I could have chosen 6 TAX every 21 days also. Either regeime is equally good for my type of BC. Much of this applies to AC and i will call her again before i get Taxol to see what she would do during this type of treatment...I have to let my Hmo treat me it will save me 60k on the chemo and about 40-60K on the radiation treatments. Why blow 100K on outside doctors when i can push my HMO to do what i need....



    1. Dexamethazone given during treatment (10mg)



    2. Aloxi given at the treatment keeps nausea down for 72 hours. Kytril or Zophran are ok too but not as long lasting.



    3. Neupogen or neulasta support



    4. CBC Blood test 7-10 days after administration



    5. Rescue meds given to take home: Some are plochlorperazine 10MG Q4h, marinol 2.5 MG 3x day, Ativan 1MG as needed for anxiety. Compazine and more anti nausea meds.



    6. Many do fine but if i still have nausea, after all this, after the FIRST treatment, they should give me Emend to take home on days 1,2, and 3 for the AC treatments thereafter. 125,80, and 80mg. This drug costs about $300 per pill so the "outside onc" will write RX for me if my HMO will not cover it.



    7. I am supposed to drink lots of water plus Gatorade so as not to get dehydrated, and take senna or milk of magnesia for constipation. Water alone can drain out of your system dehydrating you so Gatorade or salty soups, etc can hydrate you better in addition to the water. Eat protein foods to regain strength. Add excersize as I can tolerate it.



    My Onc told me this treatment plan was the "community standard" now and that we no longer have to suffer.



    So, i have the "recipe" now but how can I break it to my HMO onc without sounding like a "demanding" patient!



    Anyone have any ideas on how to do this tactfully, assertively, and gracefully?







    1.

















    to hgtgep
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  • joriesmom
    joriesmom Member Posts: 6
    edited September 2005
    Hi all, hope every is tolerating their treatments with a minimum of discomfort. I have been reading and finding lots of good suggestions. I had my port put in last Friday and MUGA scan on Monday. My LVEF was 52%. I was assurred that was normal but it seems awfully low to me. Any comments? I am a normally healthy person. I walk and garden and don't seem to get winded although I never had endurance for running. My blood pressure and cholesteral have always been low. I expected a better percentage.

    Anyway, I start chemo on Monday next week. I have to go to a chemo class this week thursday and plan to get a wig next week.

    I am already constipated from all the drugs from surgery so I have been taking stool softeners. Maybe I will just continue them thru the weekend and not stop.

    My port site is still sore but getting better. I am anxious to move forward and get this all behind me.

    Here's to my chemo sisters...

    Kris
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    OMG what a roller coaster...the doctors office just called and said....ummmm can you come in TODAY! I will have my first chemo treatment at 1 today.
    Looking on the bright side of things...at least I don't have long to get worried about WHEN it will be...LOL

    Tina
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  • Pegk
    Pegk Member Posts: 389
    edited September 2005
    Hello everybody and welcome newcomers!
    Just a few comments on some past posts:
    Susan-I did get 3 big pimples on my chin at about Day 4,but I had this Tea Tree Oil Stick from the Body Shop that dried them up right away. I hope you and those who started last week are feeling great this week.

    Junesgirl- I did find a fairly local onc. that I'm more than happy with. It's a fairly small center with a very caring staff and I'm confident that they will help me with any problems that come up. I've been encouraged to call with any questions at any time.

    Kris-Relax and heal this week. You'll be getting the same protocal as many of us- A/C DD, so you can see it is highly manageable.

    Good luck to those starting this week. You can expect a few yucky days. Take it easy. It will get better!
    Tina-I was given the choice of TAC and A/C-T DD as well, and was leaning toward the latter. I called my brother-in-law, who is Chief pharmacist at the NCI and he put me in touch with his colleague,who was their Breast Cancer Specialist, and he agreed. Case closed. Good Luck today!

    Jewelz- You've had quite a journey this year. I've checked into your blog. You've got a lot of spirit and I enjoyed reading about your adventures in the desert. Good luck with your rads and Xeloda this month.

    I completed Tx #2. I'll post that next, so this doesn't get too unwieldy.

    Peggy
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  • Pegk
    Pegk Member Posts: 389
    edited September 2005
    First of all, Monday was a great day. My husband, younger daughter and I had doctor appointments in NYC. I first saw my surgeon to check on my healing-everything is fine. Bill went off to his appointment and Sharon and I had time to kill before she had to see her therapist. I took her to get her curly hair cut in our old neighborhood in Midtown. (We moved upstate about 6 years ago.)
    Then we stopped off to see my co-workers at the studio where I work. (I've taken a leave of absence mostly because of the long commute.) I was happy to see they had collected a couple of "cheerful" videos for me to watch during my treatment. Have I mentioned the poor selection at my center (Sixth Sense, Braveheart, Beaches-I mean really!?)
    I got a lot of compliments on my new short hair do. Too bad it won't last. I'm on Day 16-it's still hanging on.
    After Sharon's appointment we all met up again and on the way home were able to pick up my older daughter, Laura, from college to have dinner with us.
    Tuesday-Treatment uneventful. I was relaxed, I had my snacks, a to go cup full of ice, a bottle of water, some muffins, yogurt. I watched a contribution of one of my colleagues Episodes of "Absolutely Fabulous"-a lot of fun.
    Then I got home and felt absolutely lousy. A dull headache, so I couldn't read, couldn't watch TV, couldn't sleep, didn't want to eat, but I forced my self. Tylenol didn't help, so at about midnight I took one of my more heavy duty painkillers left over from surgery, to help me sleep. I managed to get about 4 hours in before I had to get up to go to the bathroom, from all the water I've been drinking. And, oh yeah, did I mention the horrible metallic taste in my mouth? I got up at 6:00am to take my morning meds (Emend and dexamethazone) and to have breakfast with Sharon before she went to skill and I felt really jittery. I tried to go back to sleep but couldn't.
    To finish this on a positive note. At 10:00am I was able to take my dogs for a long walk. Lunch actually tasted good and now I'm on my way to get my Neulast shot. I'm feeling pretty good.
    Hope all is well with you all.
    Peggy
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Tina,

    Wow! When they move, they move. I am thinking of you all day today, and hope that all goes well for you today.

    *susan*
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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Tina

    Hope your chemo goes well today, which type you having?

    Good to see another of us ladies starting on the road to recovery.
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  • skibug8
    skibug8 Member Posts: 7
    edited September 2005
    Good luck to all starting treatment today and tomorrow. I'll be praying for you.
    Susan, thanks for the info. I'll try to check out the wigs there when I go tomorrow.
    Good luck all.
    Diane
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    I just got home....not to bad so far! I had AC (going to do it dose dense) so they gave me the neulasta shot (not sure how to spell it) and lots of premeds....
    I am off to the couch!

    TTYL
    Tina
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  • foxxf
    foxxf Member Posts: 171
    edited September 2005
    Got my Port in yesterday and what an adventure that turned out to be.

    Had to be at the hospital in the next town at 7am so hubby,children and myself had to get up at 5.30am to get the kids to my mothers and then over to Port Macquarie (65kms) in time.

    My surgery was booked so that I was the first on the list at 8am and they told my hubby to come back around llam to pick me up. Well 8am came and went, still waiting. every other person on the morning list had gone in and came back again. still waiting, what the...

    10.30am Then I over hear the theatre nurse say something about the ports to the other nurse but didn't quite catch what it was so I asked her. The Reply was UNBELIEVABLE!!

    They didn't have any ports and were waiting for the courier to bring some up from Sydney. WTF....

    How could they not have any ports? It's not like they didn't know we were coming. (another lady getting one too)

    So here we are nothing to eat or drink from midnight waiting for a port to put in an apperance. No t.v no magazines had a good sticky beak at my medical file though.

    I rang my hubby who had to hang around in PM for the day and wait for me, saying it could be in 5mins or 5hrs no one seems to know will call him back later.

    Meanwhile back at the ranch..12o'clock still no port..1pm still no port and no they didn't know anything.

    2pm asked nurses if any one had even checked with the courier to see if it would arrive today at least (starvation setting in) and might have mentioned that this is a giant crock of BULLSHIT....

    2.20pm finally port has arrived (Hooray)but Dr's gone to lunch.

    3pm taken to surgery at last! only to wait at least another half hour out side the doors while the Dr's and nursing staff had a very lengthy chat about the weekend.

    Finally surgery- went well- recovery- finally something to eat about 6.30pm (24 hrs no food or water) 7pm went home.

    home today very tired,little sore but all in all happy with port, not happy waiting all bloody day.

    best wishes to all
    Nicole.
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  • monkey9cats
    monkey9cats Member Posts: 47
    edited September 2005
    Well todays my "BIG" day. My 1st treatment of Epirubicin & Cytoxan. I'm a little scared (actually really scared) but I'm sure it will be fine providing I don't have any allergic reactions like my previous surgeries. I had a super nice lady from the American Cancer Society come over last night. She went thru the same thing that I'm going through (problems etc etc). Boy what a pleasure to talk to someone face to face!! She had a wig on & I asked her if that was her real hair. She reached up & pulled her wig off and said "nope"! I laughed! This dinky town I live in has no American Cancer Society support groups but they're trying to get one going which is really needed! I got my hair cut short Monday nite. I told everyone at work I was "downgrading"!! Wish I had it cut short like this years ago...I really like it! Too bad it's just temporary!! Guess I had better start getting ready for my long 70 mile journey and long day (4-5 hours for my 1st session) to town this morning. Hope my brand new port operates properly!!!

    Cheryl =^..^=
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005

    Well my being on the couch lasted all of about another 30 min.....Then could not stay out of the bathroom. At least the doc called in some other meds and not doing so bad this morning. Achy all over probably from the shot.

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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Cheryl
    I hope today goes well for you, glad you like your hair cut, at least when it does grow you wont have to wait as long to get a style you like, since you like it shorter.

    Tina
    Hope you feel better as your day goes on and the new meds help.

    I had my first round Tuesday and apart from feeling flu like symptoms that day I have been fine since, long may it continue (though i doubt it will)
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Tina,

    I am so pleased to hear that your first drip/push went well. They gave you the shot right after the chemo? Interesting. My doctors told me the neulsta shot could only be given 'at least 24 hours' after the completion of the chemo drugs.

    Do you know how much my insurance was billed for this shot? Wanna guess?????

    Hold your breath.......

    $10,997 of which $51 was a clinic charge. Can you imagine? Now I can't wait to see what the hospital actually receives from the insurance.

    What a ride!

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Bubbles,



    Wow! You have done your research. Not sure I understand all the references to the HMO, but personally I would fight for the treatment that you believe is right for you.



    Dose Dense seems to be really common among this group. The drug regimen you outlined is very similar to mine, however, my doctors say Emend all the way. The cost is actually $300 [-] per round, not per pill. Very expensive. Drugstore.com is the cheapest place to buy this at $253.00 per three-pack.



    Sex.... well, can't help you there, but it is smart to be thinking about what you want to preserve during this battle. and if you want to keep sexy, then put it higher on the priority list. There is a fabulous thread going on in "Moving Past Treatment" or something called "I want my MOJO". The consensus seems to be "Use it or Lose It" Wonderful group of women over there. Give it a read.



    I hope that your first few days are going well, and can't wait for you to report back to us.



    *susan*



    p.s. Here is the link:

    http://www.breastcancer.org/ubbthreads/s...;vc=1&nt=18
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Nicole,

    What a story you have. I do hope that you are home and recovering well. I am so sorry that this day was so hard on you.

    *susan*
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