June 2011 A/C & T Groupies Unite!

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  • MaryjRN
    MaryjRN Member Posts: 130
    edited August 2011

    Madis...Bless her little heart!  Now isn't that just pure love?  Have you tried Ativan for sleep?

    Chava...glad to hear it is going well.  I liked that movie.

    Koalakid...I wouldn't dream about going w/o a numbing cream.  That's what it is there for.  You are not a baby! Glad your first treatment is going well for you.

    Chrys...glad you are still doing well.  This is the first time in my life that I have fallen asleep while sitting at the computer.  It has already happened several times now.

    Sandy...I'm also scheduled for session #2 on Monday.  My dd is going to cut my hair this weekend.  I was not aware that when the hair starts coming out, that the scalp is going to be tender.  I never thought about that.

    Edyem...welcome. I'm glad you joined our group.  I think we've got a great bunch!  You are 3 days ahead of me.  I am also dealing with a few mouth sores.  Annoying.  

    Rox...hope you continue to feel ok.  Glad the numbing cream worked for you.

    Musical...So you are doing the 2x day rads?  My RO said I did not qualify for it.

    Justina...great news.  I am learning to sleep when my body says so.

    Capinva...12 hours of sleep is wonderful.  And I will remember to bless my chemo.

     VtEllen..Sounds like your onc is just making sure you are mentally prepared.  Yes, 0.5 is pretty darn low.  Sorry you had to close up shop.

    Eekwine...glad it's going well for you.  Let's kick this cancer's butt!

    Aimska...hope you are feeling better soon.  My onc told me that stomach pain=nausea and that I should take one of my pills if I start having stomach pain.

    Robyn...I hope all is going well for you.  Believe it or not, this has proven to be a wonderful bonding time with my daughters and myself.

    Kasi...I would love a meet up in a year!!  I am still staying away from the general public due to my low WBC counts.  I hope everything is on track to get my second AC on Monday. 

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  • pebee
    pebee Member Posts: 317
    edited August 2011

    Yikes Michelle...

    This is what I have been doing... Everyone who wants blood from me had to give me a slip and then when they do the chemo labs - they draw from the port for the other doc.  My endo and GP now all have the hang of it - no veins allowed because I can only draw from one arm due to the lymph node removal.

    And, actually, it has been a good thing.  I went to one endo who refused to cooperate - she basically told me that if I did not go downstairs and stick out my arm for a blood draw, she would call my husband to see if I could be admitted.  This when 1) I was due for a chemo blood draw via port the next day and she would have had results in about 4 hours and 2) the issue was not life threatening.  I declined and fired her.  Now, I go to a guy who actually looks at my chemo schedule and gives me lab requests with dates at the top (i.e. 9/15, 10/2, as needed, if I call her and tell her to go in).....

    It seperates out who is willing to work with you....

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Pebee - I only have one arm, too.  But I figured the stick with the butterfly needle was pretty innocuous compared to sticking my port with the big gun.  And it should have been fine but nope...I've had it happen before where they have trouble sticking me.  I have small shallow veins and they always use a butterfly.  I don't think I was dehydrated but my veins were acting like I should have had more than the 30 ounces of liquid I had consumed this morning!    Maybe chemo makes them persnickety, too. 

    Michelle

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    Went to the new oncologist office today, and I loved him. I'll be out of his office in less than 3 hours, but won't be starting there for 2 weeks. They do not have taxol because of the national chemo shortage, so I will be getting abraxane and herceptin. The latest clinical trials state that the abraxane showed double the response when compared to taxol.

    Kathyrnn, I did not have much education either. The doctor gave me a quick rundown of what to expect, and a paper to sign up for a chemo class. I did the class online. http://www.fccc.edu/patients/preparingProcedures/chemotherapy/index.html

    BobbieJo, I had my ovaries out last August so that I wouldn't get breast cancer. What a joke that was! I got it and it's er/pr-! It would benefit you to have the surgey!

    I had tumeric in a soup my sister made, and when I talked to the doctor about it, she said that some studies showed that it prevented tumors from growing, so the jury is still out on that one.

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  • cider8
    cider8 Member Posts: 832
    edited August 2011

    Michelle, I wondered if it was shingles, too.  I looked up pictures and it does not look like shingles.  No blisters.  And the nature of my rash does not sound like shingles.  I was little surprised they didn't want to see it.  I think I wanted a little sympathy for how awful it looks and feels!  

    Pebee that story of your endo is crazy!  It reminds me of how I always need to advocate for myself. I've also only got one arm to stick, too.  Through this cancer journey I see that my usual good sticking veins are disappearing.   I'm noticing how some nurses are way better than others at sticking.

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  • Ralsper
    Ralsper Member Posts: 352
    edited August 2011

    Southamptomom - I asked my ON about the Taxol national chemo shortage and she looked at me like if I were from another planet. She actually said: "What shortage?" Then she called the pharmacy and they confirmed her that they have plenty of Taxol. If you could give a link where I can find more info about this I will highly apreciated. Does anybody else has encounter this problem?

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  • Ralsper
    Ralsper Member Posts: 352
    edited August 2011

    Bobbie Jo (know as well as Boobie Jo) – I am also considering Laparoscopic Salpingo-Oophorectomy (tubes & ovaries) and I have been doing my own research. According to the National Cancer Institute, pre-menopausal women who had prophylactic ovary removal and took tamoxifen for 5 years after breast cancer surgery had a lower risk of the breast cancer coming back and better survival rates. While most of the estrogen in a woman's body is made by the ovaries, smaller amounts of estrogen are made in other parts of the body; a steroid produced by the adrenal glands is made into estrogen in fat tissue. This is why you still might take tamoxifen after prophylactic ovary removal -- to block the effect of any estrogen in your body. Said that I have a friend that took tamoxifen 15 years ago and unfurtunatelly, now, her DCIS ER/PR+ is back (she never remove her ovaries who knows if it would’ve made a difference). My ON who is also a laboratory researcher wants to wait after chemo to talk about this. Please keep me post it.

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  • Ralsper
    Ralsper Member Posts: 352
    edited August 2011

    Southamptomom - I found more information about the “chemo shortage”:



    APP Pharmaceuticals of Schaumburg, Ill list a dozen major U.S. hospitals and medical centers that haven't experienced a shortage. Among them: the Fred Hutchinson Cancer Research Center in Seattle; Duke University in Durham, N.C., the University of Rochester Medical Center in New York; the University of Michigan Comprehensive Cancer Center in Ann Arbor; Maimonides Cancer Center in Brooklyn, N.Y.; Georgetown University's Lombardi Comprehensive Cancer Center in Washington, D.C. and Indiana University-Purdue University in Indianapolis.



    Well, I’m been treated at the Fred Hutchinson Cancer Medical Center, probably that is the reason why my ON is not aware of this. However, the same source stated that some drug shortages can be eased with simple substitutions as you said. Have a healthy weekend !

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  • wendy72
    wendy72 Member Posts: 22
    edited August 2011

    My Onc Office is out of Taxol and they do not know when they are getting any in.  My onc told me I could go to outpatient at the hospital and have it done but it would take 6 hours.  I said why don't they give you some and he said "that's not the way it works."  I am now taking taxotere.  Both drugs are made from tree bark and are in the taxane family.  I am worried about swelling with it but the onc said I am getting a smaller dose than the women I know who have been administered it.  He told me if they have the Taxol again soon, I could switch back if I have problems.

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  • 3bells
    3bells Member Posts: 169
    edited August 2011

    Kathrynn, When I had my appointment with my Onc, she talked a bit about Chemo and I could ask questions. Couldn't remember anything she said afterwards. Also had an appointment with a "chemo educator" a specialist who does nothing but talk with patients about their chemo. He gave the usual handouts and talked about side effects, but I have to admit, I don't remember much about that either. With all the chances for good info, my best source has been these boards and the experiences of others. Because I cut and paste and have a directory full of information in files.

    We also have what is called a "nurse navigator" and if I have any questions, needs, concerns, or just want to whine, she is there during the daytime at least. She has helped me with my schedule at times and a couple of questions.

    The visit with my onc after first chemo and before second gave me another chance to ask questions. This time I used an mp3 player with voice recording (and her permission). Wish I had thought of that sooner.

    There are questions I probably should have asked, like what are the alternatives. But the breast surgeon took my case before the oncology team and it seemed like alternatives would have just been confusiing. How would I know if something was better than what they were recommending?

    I'm impressed with this center, but that doesn't mean they don't have slip ups - like not having my schedule change in the computer so I had to wait a couple of hours before starting treatment 2.

    I'm trying to balance trusting that this is the best treatment and keeping myself informed on the boards. Not too much of one or the other helps.

    Did you get a binder with information and resources? I'm sure they must have a list of resources they could give you. Maybe there is someone who would be open to suggestions about how to better prepare patients, and the need for that? Maybe they have some of these resources and are not good about letting patients know?

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    The Taxol shortage has made national news, but there has been no mention of it at Dana Farber.  I suspect they're big enough to not be affected.  I would have gladly switched to Abraxane, except my onco told me that it has a higher incidence of neuropathy.  The beauty is that it requires almost no premeds because of the way it's mixed, and the infusion is like 30 minutes instead of 3 hours. 

    Michelle

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  • 3bells
    3bells Member Posts: 169
    edited August 2011

    Paula, I wonder if you should tell them you want the rash looked at. I had a bad tape allergy that started looking weepy and they kept advising things like neosporin (made it worse) benydryl (made it worse). The third time I called I told them I wanted it looked at and there was no problem. The first nurse I talked to said she hadn't seen the kind of infection I thought I might have in 40 years in the profession.

    The nurse took one look and said, “Better have the PA look at it.” The PA looked and said it was the worst she'd seen in her 30 years. They put me on an antibiotic just in time to clear the infection up before my first chemo. Not the rash. I still have some left and some itching, but slowly getting better.

    Anyhow, if you think it should be looked at, insist on it.

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  • 3bells
    3bells Member Posts: 169
    edited August 2011

    Michelle, my feet have been tingly after AC#2, but not bad enough to be bothersome. Hopefully it's not a "biggie."

    I hurt for you. My veins are shot after 12 years of only being able to use the left arm. I had blood drawn instead of port acess for my first check -- since I heard it lessened the risk a bit for port infection. The nurse was good and got it at the first try, but she told me they would never be able to do chemo for me without a port. I don't think I ever get a blood draw without bruising. The worst is when you get a nurse who tries several times and then calls someone else.

     I hope they have my blood draw scheduled from the port next time. I'll take the small added risk of infection and try save my veins for a few more years. What a bummer that your third tube has to be done over. Can it be done through the port this time?

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  • 3bells
    3bells Member Posts: 169
    edited August 2011

    Michelle, my feet have been tingly after AC#2, but not bad enough to be bothersome. Hopefully it's not a "biggie."

    I hurt for you. My veins are shot after 12 years of only being able to use the left arm. I had blood drawn instead of port acess for my first check -- since I heard it lessened the risk a bit for port infection. The nurse was good and got it at the first try, but she told me they would never be able to do chemo for me without a port. I don't think I ever get a blood draw without bruising. The worst is when you get a nurse who tries several times and then calls someone else.

     I hope they have my blood draw scheduled from the port next time. I'll take the small added risk of infection and try save my veins for a few more years. What a bummer that your third tube has to be done over. Can it be done through the port this time?

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited August 2011

    When I started chemo on June 2nd, there was apparently a shortage of A/C at that time. That is why I started with Taxol first.  Seems the drug makers could get their act together!  :)

    Ralston, I met with my gyn yesterday.  The cyst is still present (probably no biggie) on the right ovary, but with my history, she is highly recommending that I move forward with the surgery. There is definitely a genetic component in my family somewhere, it's just not the BRCA 1 or 2 (both my sister & I tested negative).  She said that someday another genetic mutation will be identified that we are likely to carry.  

    My family history is:  mom died at 36 of breast cancer, both my maternal & paternal grandmothers died of the disease, my dad's aunt also.  My sister & I both have breast CA now, & my sister had ovarian back in 1995.  I'm not messin' around with a history like this.  That is why I chose bilateral w/o reconstruction for a small 1 cm stage 1 cancer.  That & my tumor was a grade 3 aggressive little booger.  I'm only 39 & we have a 4 year old. I don't intend to leave him when he's 5 like my mommy left me.  (I don't say that with any blame...I just don't want history to repeat itself more than it already has.)  So, I'm going at this very aggressively in the hopes that I'll be around 40-50 years from now.  If I have a recurrence, I want to be able to say that I did everything I could have to prevent it.  I don't want any "what ifs".

    As far as the surgery itself goes, she explained the procedure in detail (let me know if you want those details).  She said that there is typically a 1-2 week recovery period.  They tell their patients to plan on a week off from work, then re-evaluate at the end of the first week to see if more time off is needed.  I'm going to try to schedule my surgery for over Thanksgiving break (I'm a teacher) so I don't have to miss so much time.  I'm bound to have lots of doctors' appointments this fall, plus our kiddo will likely be sickly with just starting school, so I don't want to use the majority of my sick time for this procedure.  

    I asked if it was possible to have the port removed at the same time.  She fears risk of infection even those the salpingo-ooph is laparoscopic.  She said that they do manipulate the uterus around a bit, which contains natural bacteria that could "float" up to the port site while it's open. She is going to ask my surgeon when she sees him in the OR next week what he thinks & then get back to me.  It would be awesome to have them done at the same time so I don't have to have any more anesthesia.  We'll see.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    3bells - yes, they will take the blood for the CBC on Wednesday when they access the port for chemo.  That's what they usually do and it's a non-issue. 

    BobbieJo - oh my, your family has had more than its share of BC...I don't blame you for wanting to throw the book at this.  There is so much more to learn about the genetic makeup of breast cancer, I guess they don't know what they don't know.  Some day...

    Hope everyone is having a good weekend!  DH is playing golf with our good friend's DH and his son, and I am going to hang out at their house until dinner time, then we are meeting the guys at the golf club's restaurant.  It should be a nice day/evening.

    Michelle

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  • tldrose
    tldrose Member Posts: 39
    edited August 2011

    Hello - I'm jumping in new to this forum, but am going through much of the same things you all are. I just finished round #3 yesterday of A/C and am on dose dense schedule, going every two weeks. After A/C I will be having 4 rounds of Taxol - should be done end of October.The first two rounds of A/C went well, except for the Neulasta shot the day after my chemo. I reacted to it twice with redness, rash/hives and on the 2nd one, got feverish, chill, bone achiness and felt miserable for 2 days. This time around I spoke with my Onc and we are skipping the neulasta shot this time and I will go in thursday for a blood draw to see about my cell counts.Thankfully they have been/remained high.

    This has been a roller-coaster journey for me since being diagnosed in April. In June I had a bilateral mastectomy with DIEP flap reconstruction. That went very well and I am 3 months out from that. Healed very well, no complications. I had my port surgery on July 8th and that was painful for me. It took a few weeks to heal and settle in - so to speak. For my labwork I usually just use my right arm, since left one had lymph nodes removed, I'm very protective of my port and only want it accessed for chemo treaments. Sorry to jump into this discussion board, but I've learned alot on here.@Michelle, thanks for your blog and your story!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Tldrose - welcome!  Sorry to hear about the Neulasta troubles...did you try Claritin and still have the reaction?  I skipped a Neulasta shot after my third AC and my whites tanked.  I am hoping that I don't need it after Taxol, we'll have to watch that.  And "you're very welcome" - glad you liked my blog!  I am always hopeful that it helps someone. 

    Michelle

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  • cider8
    cider8 Member Posts: 832
    edited August 2011

    I haven't heard of any shortage here.  I guess if it affected me, I would have heard.  

    I did not have a chemo class or anything like that.  My MO told me stuff and the first time I saw the infusion room was when I got my first infusion.  During my first infusion, a social worker came to talk to me about all the various resources available to me.  My nurse also went over some things, too. My first infusion was from a vein; there wasn't enough time to get a port first.   Since then, they access my port once when I start infusion.  They get my IV fluids started, then get a blood draw.  I was never told about foods to avoid or anything.  

    My rash is much better this morning.  I'm not terribly itchy allover anymore.  The rash is also not raised anymore.  It mostly looks like I have blotchy skin, not rashy skin.  I still have 6 more days of the methylprednisolone step down course.   

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  • 3bells
    3bells Member Posts: 169
    edited August 2011

    Paula, so glad the rash is improving!

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited August 2011

    Thank you cider, Bella, Rose, Bobbiejo, Michelle, (and anyone I missed) for your answers. I'll get back to what as I see as patient education problems another time, since I'm almost done with Taxol, I thought I'd relate my experience with it. (please know that I am sitting here chuckling as you discuss your ports, I was never offered the option of a port, lol. Had to have an IV inserted 3 different times last week for treatment)



    My Taxol experience has been fairly easy (sorry if I caused a shortage for y'all, heheheheh)



    My experience might be easier than yours, because I was not hit with A/C first



    Have never had any nausea, and didn't receive any anti-nauseas with the treatment. I do have neuropathy in my feet, but I also had surgery for a herniated disc that had completely compressed my sciatic nerve, 4 weeks before I started chemo. (5 months in extcruiating pain, so bad that I dropped 25 pounds in a month). My feet have been numb off and on for years from my back injury, so I might be more susceptible to this SE, than you will be. (Also, I think the highdose b vita helps)





    They told me my hair would "gradually thin" over the 3 months. After my 3rd dose, I was pulling small rodents outta my head, and by the weekend I had enough for a pony! (really screwed me up because I had a "shave the head" party I had to move the date up on, lol. Had a party for all my girlfriends, with silly get-ups, a "boob" cake, a special scarf all my friends signed, and they all helped shave my head. Have to tell you it was one of the best things I did in this battle so far!!!!)



    Since shaving it about a month ago, it has grown back quite a bit (a/c will take care of that problem) so it does grow back on Taxol.



    My nails are more brittle than before, but I assure they're not falling off, they're still growing and I didn't use any ice.



    My RBC are a little low (possibility I may have ulcers) but my WBC are fine (will be starting Nuelasta after A/C. I've had a very small amount of fatigue but I actually think it's more related to a little depression from some other things going on.



    All in all, my experience was that Taxol was no problem, BUT REMEMBER, I went into it without already having my ass kicked to the curb by A/C

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  • 3bells
    3bells Member Posts: 169
    edited August 2011

    Ugh! A huge fly, one of those dive bombing zooming ones that don't sit still for a fly swatter. Dh finally trapped him in a bathroom and got him. My dragon slayer.

    Am I the only one who freaks out at flies. Thinking of extra germs which we don't need right now. I'm afraid to leave food uncovered to cool. Parnoid? It seems when the grandkids visit, at least one gets in. This big one must have laid low for a couple of days or come in with the dog.

    Hoping everyone is having a low S/E day.

     Bobbie Jo, I missed your post about family history. I'm so sorry. It had to be a hard road for you and an even more scary diagnosis than for lots of us. Agressive is good. You go, girl!

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  • FGCUfan
    FGCUfan Member Posts: 41
    edited August 2011

    Hello all, sorry I've been MIA but I spoke too soon about my no problem 4th A/C!  I felt great for the first 4 days then the biggest sleep I've ever had hit.  My tx was on 8/04 & on the 8th I started sleeping & sleeping & sleeping.  Barely awake enough to eat.  I have had fatigue problems since my fibromyralgia dx. 17 years ago & have also had lots of trouble sleeping but I certainly have made up for all the lost hours of sleep.

     My labs on the 11th were not as bad as last mid-cycle but WBC was 1500 & Hgb was again down to 8.  As usual my stubborness overcame my "good" sense & I again refused a transfusion but took the extra fluids.  Today is the first day I've been able to walk to the paper box about 150' & back and my legs were shakey by the time I got back but boy did I have an appetite!  I've been eating for about 3 hours now & am about to get full & am definitely ready for a nap.  I'm seeing the onc again after labs on Thurs. & I will certainly take the transfusion if the Hgb is low, then 1 more week off before my 12 Taxol are scheduled to start (if there is any left for FL).  So thankful that the A/C is over!!

    I've tried to catch up on all the posts since I was last here & noted all the blood draw issues.  My port will not "give up" any blood & I've had the studies & it is ok, just stingy with the blood.  All of my draws, even on tx. day are from the anticubital vein which luckily is nice & strong, so far.

    Hope we all have a better week.  Love, luck, laughter, peace, prayers, & little SE's to all.

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  • 3bells
    3bells Member Posts: 169
    edited August 2011

    Susanne, good to hear from you again, but sorry the 4th hit you so hard. I'm so glad for you that #4 is over though! Hoping taxol treats you well!

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  • Ralsper
    Ralsper Member Posts: 352
    edited August 2011

    Southamptomom -You mention that the latest clinical trials state that the abraxane showed double the response when compared to taxol. I have done my own research and you are totally right. Question: Why they don’t offer us as a first choice abraxane from the beginning ? Maybe I should have researched more before chemo, but I trust my ON. I will ask her, but did your ON comment more about this? I am confused.

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    I was told that the insurance company will only pay for the abraxane if you are allergic to the taxol. Crazy that they can insist we take a medication that could harm us. I worry about this chemo shortage becoming a more widespread problem.

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  • cider8
    cider8 Member Posts: 832
    edited August 2011

    Rose, that's interesting.  I'm hoping my rash is proof enough I'm allergic to taxol.  I wonder if I'll be getting abraxane?  I'll find out Wed.  I have to admit, I didn't do any chemo research.  After all my surgery research, and being prepared not to need chemo, I just didn't have it in me.  I love what I've learned here!  Off to read about abraxane...

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Hi ladies, how is everyone doing this week?  I have my first Taxol tomorrow assuming no shortage at Dana Farber.  I bought my supplements today (Acetyl-L-Carnatine, B-6) and ordered the L-Glutamine.  This stuff was not that easy to find (except for the B-6).  I ended up ordering the other two from WalMart's website - free delivery and I don't have to run around any more trying to find it.  I got enough ALC to get started. 

    Today I received my free headwrap from franceluxe - their Good Wishes program.  It is beautiful and I must say far more comfy than a wig.  DH doesn't care for it...I agree it makes it obvious that I'm a "hair loss victim" but it is a lovely wrap.  Anyone with hairloss can order one for free:

    http://www.goodwishesscarves.org/

    It takes 3-6 weeks and they enlose a card personally signed by everyone on staff.  They are quite amazing!

    Hope everyone is having a good week with minimal SEs.

    Hugs,

    Michelle

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    I'm doing ok. Going for my second taxol/herceptin on Thursday. I had some nausea days 2-4, and slept 1 day, but nothing like AC! Hoping for the best for you Michelle! I got a beautiful black silk head scarf from Good Wishes. I tried to PM singlemom, and hoping she's okay. Our thread has been quiet. Hope everyone is okay...

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited August 2011

    Had 2nd A/C on Thursday.  Experiencing some blurred vision.  Having difficulty reading road signs while driving.  Also tonight became very, very lightheaded.  Anyone else experience these SEs while on A/C???

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