Metaplastic Carcinoma

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  • blesslily
    blesslily Member Posts: 6
    edited February 2010

    My sister's doctor talked to her for only about 10 minutes today and asked her to get the full report next Monday. But it has been confirmed she has metaplastic cancer. Her2 negative as well. She had 27 lymph nodes removed with one of them had cancer cells. (1cm in mammography slide and palable). I think this is probably as good as it can be for my sister, I had worried about the cancer spread to more lymph nodes. She has to wait 4 - 6 weeks before a chemo oncologist can talk to her (being in New Zealand, she has to wait in the line). Would that be too much delay?

  • benaroberts1
    benaroberts1 Member Posts: 4
    edited February 2010

    Delay is always scary -but on my clinical trial it said its best to have chemo - up to 30-60 days after the final operation.  She should be fine. Bena

  • vegasbaby5
    vegasbaby5 Member Posts: 1
    edited March 2010

    II don't think it's as important where you go for treatment as it is the doctor you go to.  Forget the T.V. commercials for a minute.  Big centers who treat you like a baby with lots of hugs and warm and fuzzy feelings may not know anymore about our cancer.  As most of you know we are about one in 300 bc's.  When I got my metaplastic diagnosis in 10/08, I was going to go to the surgeon who took out my gall bladder 3 years before.  Fortunately I work in a hospital laboratory and my pathologist who had just come from Harvard Med School said no - I needed to go to a surgeon who specializes in breasts.  I know it sounds odd, but he said if his mother in California got this cancer, he would send her to this surgeon.  The surgeon sent me to an oncologist (who specializes in breast cancer) for 4 treatments with A/C and another 4 with Taxotere before my mastectomy.  Then 6.5 weeks of rad therapy.  Cancer.net is a good info resource for us.

  • strawberryshortcake
    strawberryshortcake Member Posts: 3
    edited March 2010

    Hi, I too was diagnosed with metaplastic cancer, pretty scary stuff.  I am particularly interested in contacting anyone else in New Zealand who has the same diagnosis.  Best of luck to everyone.

  • strawberryshortcake
    strawberryshortcake Member Posts: 3
    edited March 2010

    Blesslily, please encourage your sister to ring the hospital.  I was waiting for an appointment (Waikato Hospital) which never seemed to arrive.  I ended up ringing the hospital and the lady said "Oh I could give you a time right now!"  I was blown away and wished I had rung earlier.  I then rang the next week, I said I was just checking they had all my contact details correct and they had had a cancellation so my appointment was moved forward two weeks!  I have had surgery, chemo and radio therapy and amongst other things I learned that you have to question and ask all the way through the journey as hard as it is, it's up to you and your support crew.  The old saying "the squeeky wheel gets the oil" is oh so true.  

  • Smiley_Oz
    Smiley_Oz Member Posts: 5
    edited March 2010

    Hi,

    I am on Australia (Perth) but am happy to keep in contact as have not found many women in Oz (or NZ) that have metaplastic like myself....

    Am deciding between 2 drug treatments as we speak

    Lisa :)

  • blesslily
    blesslily Member Posts: 6
    edited March 2010

    Dear strawberryshortcake,

    Thanks so much for the advice! My sister lives in Glendowie, not sure how far is it from your place. I've asked my sister to call the nurse from time to time. I'll post when I know what kind of drugs the oncologist recommends to use for chemo.

  • blesslily
    blesslily Member Posts: 6
    edited March 2010

    Lisa,

    Did you doctor consider "Bevacizumab"? I saw a paper before when paclitaxel is used with bevacizumab in HER2-negative patients there is a significant and persistent improvement in disease-free survival with the addition of bevacizumab. I asked my sister to inquire about this drug as well.

    Do you mind sharing which drug combination you ultimately choose for your treatment? Many thanks!

  • blesslily
    blesslily Member Posts: 6
    edited March 2010

    Dear Bena,

    Thanks a lot! I like your blog very much!

  • shadowdancer
    shadowdancer Member Posts: 2
    edited March 2010

    Hello everyone. 

    My mom was diagnosed in 2002 with MBC.  We started a support group of women and families all across the United States, and have a yahoo group site and a website (which we will be updating for easier use).  The website is  http://www.metaplasticbreastcancer.org/  While it isn't overly user friendly, we are hoping to get it updated and find better ways to communicate.  We also are working with a researcher now, and we hope to make some progress on this horrible disease.  Please feel free to contact any of the women listed on the website above, and we would be happy to share our progress to date, our past struggles, and our hopeful future.

    Michelle W

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  • Smiley_Oz
    Smiley_Oz Member Posts: 5
    edited April 2010

    Hi ladies,

    Its been a while since I have been able to come back to the sites as I am now 3 chemo sessions in....

    BlessliIy, i eventually went with FEC-D (3 x sessions of FEC and 3 sessions of Taxotere/Docetaxel....

    Will be back in touch soon

    xx 

  • gcpommom
    gcpommom Member Posts: 60
    edited April 2010

    Oh my!  So many new faces since I last posted....I had forgotten about this forum, since it was not very active.  I will bookmark this forum so I can find it easily and stay in touch with you ladies : )

    I was dx 12/08 so I am almost 1 yr 5 months out now, had bilat mx 1/10, had 3 A/C tx (had to skip last one due to PE and pneumonia), and 9 out of 12 Taxol tx (had to quit due to neuropathy).  I finished chemo June 09.  So far, so good, but then again, my onc doesn't believe in follow up scans unless necessary.  I've seen him only once since finishing chemo, and see him again next month.  At that time, I plan to ask for scans, just to check on things.

    Shadowdancer:  I am happy to see your website for MBC, and have put it in my favorites.

    Gingercobble:  My first path report showed a very, very weak ER, under the percentage that would count as ER positive.

    Bena:  I had like 30 cysts in my breast, and the one that was MBC did hurt, I agree.    

    I am on Facebook along with many of my other bco friends, if you are there, look me up, Judy Spitz Batchelor.  I tend to go there more, since coming here tends to stress me out sometimes if I do too much reading

    Judy

  • countryfrau
    countryfrau Member Posts: 23
    edited May 2010

    I'm a newbie to blogging and MBC having been diagnosed in late March 2010. I had a mastectomy on 04/07/10 and should start chemo in the next couple of weeks.....TC followed by radiation. I'm very scared as so much of what I read is negative. Bena, I've read your site...thanks so much for the information there. There isn't too much out there.

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    Good morning Countryfrau, glad you found us here, and sorry that you had to.  Please be sure to join the chemo group for your starting month....trust me, it is important to have others going through the same thing at the same time that you can talk to.  There isn't much info out there, for sure....makes it really hard.  But for now, just focus on getting through chemo, don't do *too* much reading.  As I learned, it can be very stressful, and did me no good.  Again, I can't stress how important it is to stay in touch here, these boards are wonderful, the women are wonderful, you will make friends that will help you so much to get through this crap. 

    I did ask the board moderators to create a forum for rare bc or at least our own thread, but haven't heard back.  I hate seeing the MBC threads getting lost because so few of us post here.

  • countryfrau
    countryfrau Member Posts: 23
    edited May 2010

    gcpommom: I was telling my husband this morning about this site and that I had read of of the nicest 'sayings'. I couldn't remember the exact wording, but it began "The friend who holds your hand....". Imagine my surprise when I came on line again and saw that the person who answered my plea was the author of the saying!   I can' tell you what it means to connect with you. I will follow your advice and quit searching for information about MBC and concentrate more on reading in this site.

    You are so young! I am 61, but as you well know, bc is crappy at whatever age. At my chemo 'teaching' session, they made it sound as though it would be a cake-walk (except for fatigue the first week) with all the meds they will give to prevent side effects. From reading here, I've learned that that may not be the case, so at least I won't be blindsided if it turns out I have problems.

    I hope there will be a forum/thread for rare types of bc. The closest thing I've found was one for "Triple Negative Breast Cancer". My onc tells me that mbc is more aggressive than tnbc, but I'm triple negative, so I've been reading there, too. It's all so confusing.

    Thanks for the welcome and advice. 

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    Hi Countryfrau! 

    I started using that saying about friends because, sad as it is, it is not uncommon for a close friend to kind of disappear from your life when bc happens.  That happened to me, with a friend of over 30 years.  I don't understand how someone could do that, but I guess they can't handle it or something....

    Reading and talking here is a great way to educate yourself on your treatment and side effects, most oncs will not tell you MOST of the stuff you will learn here, that's why this site is so helpful, docs like to downplay everything. 

    I didn't have the chemo you're having, I had A/C and Taxol, with Taxol being the easier of the two.  It was hard for me, my onc thinks I was 'difficult', and I got every symptom in the book, lol.  Had to stop the AC early due to a pulmonary embolism, and stop Taxol early due to neuropathy. Since I had a bilateral mastectomy, no radiation for me this time.  Did you have surgery already?

    I had DCIS Stage 0 bc back in 2004, my first mammogram at 40 yrs old.  Only had lumpectomy and radiation then.  This MBC is a new primary, unrelated to the DCIS.  My onc has seen 10 patients in 25 yrs with MBC, and seems to think recurrence rate is similar to TN, about 1 in 3. 

    I don't visit the TNBC board too often...I got too depressed reading all the scary stuff, and after chemo, decided just to try to live my life without thinking about things too much.  It's kind of like a waiting game, and while I am stressed, I'm not as stressed as when I read.  I do like to read about new treatments, trials, diet, etc.  It is all so confusing, I agree.  I mostly post on my chemo thread from Feb 09, sometimes on the hair board, here, and the occasional random post that I feel I can help with.

    Please call me Judy, lol, it's much easier to type than gcpommom.  Hope to talk to you soon, when do you start chemo?

  • countryfrau
    countryfrau Member Posts: 23
    edited May 2010

    HI Judy,

    I'm Jan, by the way. I grew up in the country, hence my 'signature'. I'm a Michigan girl, too, having been born in Detroit. I live in Illinois now.

    I'm already finding that some friends AND family are drawing back...I think I make them feel uncomfortable even if I don't mention bc, and since I have no control over that I don't let it bother me. People handle these things the best way they know how, I believe...it helps to believe that so I don't feel the hurt. Thank God for the friends and family who remain close.

    It sounds as though you went through a lot with your chemo. I should be starting in a week or so. I had a rt mastectomy with sentinal node biopsy on April 7th Nodes were all negative which I understand is much the norm with MBC since it tends to metastasize through the blood. My onc said that MBC is a subclass of TNBC and is more aggressive. But I've read a lot about TNBC since I am triple negative. The tumor was 4.9 cm instead of 5 cm which kept me in Stage II rather than III. Dubious distinction at best. lol  I had a slight internal bleed after surgery and became quite anemic; then developed an infection in the drain which finally came out last Tuesday after 4 weeks. Boy, was I glad to get rid of that! I see the surgeon tomorrow to see if everything is OK for the port to be put in and chemo to start. I fell pretty good now and have regained most of my strength so I'm ready to get on with treatment.

    I've been reading different forums all day, and you are right. There is a wealth of information here and it's very comforting to read about the experiences of others. Much better than some of the infoirmation I was reading online. I know I will visit here often. Thank-you for sharing your experience with me...and I hope this recurrance will be your one and only, and you have to have no more chemo. Let's stay in touch. 

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    Hi Jan!  That's funny that you're from Michigan!  I'm actually from Philly, moved here when I was 12, and can't wait to leave, lol.  Want to live somewhere warmer : )

    Yeah, people just don't get the cancer thing.  They aren't comfortable with it, well at least most of them.  To my surprise, one of my biggest supporters was one of my newest friends, she was awesome!  Only my immediate family got it, even my dad doesn't really understand it all. 

    My onc said that I "don't metabolize medicine well"....right.  I say YOU do some chemo, and let me know how it goes, lol...it should be a prerequisite that oncs should do at least some chemo so they can be more empathetic to what we go through LOL!!!

    My tumor was 2.9cm, very close to both skin and chest wall, but luckily touching neither, just barely.  I thought they could test to see if it was in my blood, but my onc says no they can't tell, but I swear others here say otherwise.  Would be nice to know if it is or not.

    Yes, I didn't like the drains at all.  I am getting ready to interview surgeons for reconstruction, after over a year with no breasts, I've had it.  But I am very nervous about the long surgeries.  I'm glad you are feeling better now, and just because I had problems with chemo doesn't mean you will.  Hopefully you will do great!

    I didn't have a port, we used veins and if it had become a problem, then they would've done a port.  It did a number on my veins though.

    I found that the 'chemo list' they have here is a bit of overkill.  I basically brought my laptop to each chemo, and spent the entire time (loopy on the drugs mind you) laughing to the point of tears on a website called Engrish.com.....a bunch of signs/shirts, etc that have been translated POORLY into english over in Japan and china, too funny.  They had snacks and drinks, but I did bring lots of water, drank it before and after.  Be sure to drink lots of water!

    gotta go make dinner!  talk to you later

    Judy

  • countryfrau
    countryfrau Member Posts: 23
    edited May 2010

    I found out today that my port will be inserted on Friday and my first chemo tx will be Monday afternoon. May sound strange, but I'm ready to get going with this. I'm a little nerevous now, but expect to be moreso by Monday. The RN said I will be given benadryl (among other things) before the chemo, so I figure with a little luck I'll just sleep through it. Silly thought. What does it matter whether I'm asleep or not..it's not like I'm going to FEEL anything while it's infusing!  :)

    Judy, I don't know of any blood test either, but I'll ask my onc about it when I see her again (06/04). I can only imagine how you're dreading surgery again. I know I would be, too. I'm almost wishing I'd had a bilateral mastectomy...wouldn't feel so lopsided. And with the swelling, I haven't been able to be fitted for a prosthesis, yet. So far, no wardrobe malfunctions, thank God. I've read some of the posts in the forum about wardrobe malfunctions and got some pretty good ideas to prevent them.

    Have a good day tomorrow!  Jan

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    You know Jan, I know what you mean about just getting chemo started....I was nervous too, but also ready to get it going, and get it done.  It felt weird to stop going to chemo.  I never really slept through chemo, but was pretty loopy from the drugs.  I got benedryl, atavan, steroids, and some antinausea drug I can't remember the name of right now.  The steroids give you a huge kick of energy for like 2 days, my face would be pitch red and I'd clean the house, lol.  Then you crash off them....

    I see my onc next week...still kinda shocked that while most TN's (and especially us) see their oncs every 3-4 months for the first year after chemo, mine pushed it back to every 6 months.  At the same time, I guess it doesn't matter, they just check blood, ask questions and send me on my way.  No scans unless I really put up a stink, I guess that's pretty standard with a lot of oncs.

    Judy

  • countryfrau
    countryfrau Member Posts: 23
    edited May 2010

    Hi Judy,

    I was pretty shocked when my onc said there wouldn't be any follow-up scans after I have radiation because studies have shown that with this type of cancer, there is no benefit to having scans....they will just watch for symptoms. I'm not sure I like that idea, and will have to research more to see if that's correct. Right now, it doesn't make that much sense to me, but what do I know? It's just scary to think I get treatment and then bam! You're on your own with a 1 in 3 chance of recurrance. But since I haven't even started chemo yet, I think I'll keep THAT concern on the back burner. It seems as though you've been told the same thing.

    I think I'm going to take a walk now. Maybe burn off some of the anxiety I can feel building due to the chemo starting. I have to laugh at myself....for all my bravado in saying, "Let's get this chemo started", now that it's really happening, my true wimpy self is emerging. lol Talk to you soon.

    Jan

    Are we the only ones blogging on this topic?????? I know this is a rare cancer, but maybe there are some others out there who just haven't found it yet.

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    Hi Jan

    I felt the same way about no scans, it's just another thing I had to get used to....although I have managed to have many scans for other reasons, like blood clots, breathing problems, etc, and have been reassured that so far, at least my chest/lung area is doing good!  If you really feel strongly about it, most oncs will go ahead and order scans if you want them, even though they say they won't.  You can always make up symptoms, lol, that works too.

    Well, this thread is really not used much, you're right.  If I had to guess, I would say I've seen about 10-15 of us with MBC here over the last year.  That is why I say join a chemo group, or other group here that is more active.  I know the first thing I did when diagnosed was search metaplastic here, and came up with these few threads that had no real activity.  So I just check in once in a while to see if anyone is around....and found you : )

    I know how you feel about starting chemo on Monday....I was quite scared, too.  Hang in there, I know how hard it is right now.  I hope all goes really well today with your port.

    Judy 

  • countryfrau
    countryfrau Member Posts: 23
    edited May 2010

    Hi Judy,

    How are you feeling? It sounds as though you've been through a lot. Did you have medical problems b4 your first diagnosis? I really hope you are feeling reasonably well.

    I'd like to keep this thread active in hopes that others with MBC may find it. My onc said that MBC isn't exactly the same as TNBC, but as yours said, it's very similar. She said the main difference is that this is a little more aggressive. Lucky us! She also told me that if it comes back in the other breast, it would most likely be a different type of cancer altogether.

    You know, I was an oncology nurse, but quit 20 years ago, so I don't know much anymore with all the changes and my age-related memory loss. lol Anyway, back then, bc was bc. I'm so totally amazed to learn of all the different types. And the wonderful meds to counteract the SEs.

    The port went in OK with just a little pain considering the anesthesiologist had to 'wake' me up since I started coughing. So I felt quite a bit of discomfort, but it was worth it to have the port. Now I'll just wait for Monday. I'm drinking, drinking, drinking...water, that is. And I've joined the May 2010 chemo group. Thanks for that suggestion.

    Hope your week-end is lovely!

    Jan

    Jan

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    Hi Jan

    You know, I'm feeling ok, but very tired all the time.  I was ok before bc, except I've always had problems with my asthma.  The blood clot was a surprise to us all....we aren't sure if it happened because of the cancer, the chemo, or a family factor, all of which could be a possible risk factor.  They say as long as I am 'cancer free' I can go off the blood thinners....now how can we possibly know that for sure?  Ugh.

    I'm glad your port is in place and you're feeling ok.  It should make things easier for you.  I hope you have a wonderful chemo group, it really does help you get through chemo. 

    That's interesting that you were an onc nurse.  Honestly, even though there are so many new 'types' of bc now, I find it interesting that so many of us get the same treatment anyway, with some variation here and there.  You said you're getting TC....is the "T" for Taxol or Taxotere?  and I assume the C is the same one I got, which I can not remember the name of now, lol.  The only difference is that I also got the "A", adriamycin, red devil they called it...nasty stuff.  The "A" stuff can cause heart problems, I really wasn't sure I wanted it, but so far, I'm ok with the heart function.

    Have a nice weekend!  I spent all day today at garage sales, am exhausted!  Got lots of exercise though.

    Judy

  • countryfrau
    countryfrau Member Posts: 23
    edited May 2010

    HI Judy,

    I hope you're having a good day today.

    The 'T' is for Taxotere and the 'C' is for Cytoxin. I would bet the 'C' is the same as you got since that drug has been around a long time. I'd never heard of Taxotere before. My onc said it's stronger than Taxol and doesn't have the heart-damaging issues tht Adriamycin has. If I remember correctly, the toxicity to the heart of Adriamycin is dependent on the dose...there used to be only a certain amount a person could get because of the heart issues. But one would hope that in 20 years they have maded SOME improvements.

    I'm not a real fan of going to garage sales, but I love to have garage sales. Now how weird is THAT, I ask you? I just like to bargain with people. Most of the time I just give stuff to the little kids. It's fun, but I haven't had one in a few years.

    I haven't done much this week-end. The port site is a lot less painful today. I'm starting to get a little nervous about the chemo...not really fear, just anticipation...wish it were starting now. I take my first dose of decadron in a couple hours. Let the fun begin.......

    Have a great day. Have to get this day underway (only 7am).

    You take care!  Jan

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    Hey Jan....thinking of you today, hope you aren't too nervous (yea, right) as you start chemo....

    My heart doctor said that it's fairly uncommon these days for the Adriamycin dose to cause problems, I think he said 1-3% chance.  Plus, I only ended up getting 3 of the 4 AC treatments, so I should be fairly safe.

    I am just the opposite of you, lol....hate having garage sales, LOVE going to them.  I used to go with my mom every week, and it's been really hard this last year going without her : (  she died last year right after I started chemo.  That was probably the hardest thing I have ever been through, ever....she was my best friend

    Well you should get some power cleaning done over the next couple of days with the decadron, lol.  Don't freak out if you turn really red over the next couple of days as well, the steroids do that to you. 

    Hugs to you today Jan, talk to you later

    Judy

  • countryfrau
    countryfrau Member Posts: 23
    edited May 2010

    Good morning, Judy,

    Thanks for thinking of me today. I go at 1:30 pm and, yes, I'm starting to get a little anxious. I'll be glad to have this day behind me.

    Good to hear that about the Adriamycin, in case my onc decides to change to that (if I react to the Taxotere). Will you have to have the 4th tx? I know it's been awhile since you've been off chemo.

    I was really saddened to hear about your Mom. It surely made your tx that much harder for you. My Mom passed away at 53 in 1979 (I was 30)...I miss her still. I can't tell you exactly when it happened, but there came a time when the pain lessened and the memories took over. If you haven't reached that stage yet, I hope it comes for you soon.

    Thanks for the tip about the decadron turning my skin red. Another one of those tidbits of information that may prevent a call to the MD in case it happens. I AM feeling less muscle discomfort after my 2 doses of decadron, and after 3 more days of it, I should really feel good.

    I was reading on the May 2010 chemo thread that days 4 and 5 are the worst...they say probably d/t coming off the decadron. Makes sense, cause my onc does have me just going from 4 mg twice a day to zippo! Do you recall a problem?

    One of my favorite nieces is graduating from high school on Wednesday (day 3); it's an outdoor ceremony, but I just don't know if I should go, even if I feel good. Any suggestions? I think I'm worried about making the 'decadon let-down' be worse, if that really is going to happen. I know she'll understand, but I'd kinda like to go. But, of course, health needs are a priority now. I guess I'm leaning towards 'no'...just don't want to feel as though I'm too much of a 'whoos'. :)

    Have a great day!

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    Hi Jan.  Hope you are feeling ok, and that all went well for you today.

    No more chemo for me, I was just having too many side effects from the AC, so my onc stopped it after the pulmonary embolism.  I only had 9 of 12 Taxol as well, since he didn't want the neuropathy to become permanent.  But I feel good that I got as much as I did.

    Yes, they just stop the decadron like that, and yes it does cause quite the crash.  During my AC tx, I couldn't even get off the couch some days, but part of that had to be from the AC itself, not just the steroids. 

    I am having a bit of an easier time about my mom, but never know when I'll just break down.  It was so unfair, rather unexpected.  She was amazing, always put us kids first.  I'm sorry you too lost your mom, she was so young at only 53, that is very sad. 

    So as far as going to the graduation, you might be surprised that you feel up to it....I found that I felt weaker as the treatments built up over the months, so if you really want to go, now would be the time (as long as you feel ok on that exact day).  You are having a different chemo from me, so it's hard to say....you may feel tired, or nauseous.  Or you may still have steroid energy.  I guess you might have to just wait and see how you feel.  As long as you aren't on your feet all day long, you should be ok I think.  I always said I wouldn't overdo while on the steroids, but then they would kick in, and I would clean all day and night, lol, and then crash....but while I was energetic, I just couldn't sit still.

    I hope you're feeling ok : )

    Judy 

  • countryfrau
    countryfrau Member Posts: 23
    edited June 2010

    Hi Judy,

    I sent you a message last night (or tried to, anyway), but I didn't realize you could only transmit 5 times in a 24 hour period.

    The tx went OK. Lots of premeds over an hour (2 bags, each 30 min) They gave me decadron, benedryl, pepcid, emend, and another drup I don't remember. The taxotere went in OK, and she changed over to Cytoxan while I was sleeping and didn't wake up till it was almost over. All that pre-med made me very tired. I woke up feeling very "fuzzy"..not dizzy, just not really able to focus. That is gone now. A more disturbing thing last night was that I was having a hard time thinking of words. Bill would ask me a question and I couldn't remember the simplest of words sometimes. That, too, seems to be gone this morning. Thank goodness.

    I feel pretty good, actually. Just a little queasy. I have often had constipation problems in the past, so I tried to eat some Raisin bran, but only got down a couple mouthfuls. I didn't feel sick, I just couldn't eat it for some reason. I did manage to get down about 4 oz of prune juice. Yes, I'm one of the 'sicko's' who LOVES prune juice..but only up to 4 oz at a time. lol

    I go this morning for a Neulasta injection. Ugh! Heard nasty things about the SE of that, but the bone pain seems to be controllable and doesn't last a long time...so I've read. But it beats having to go to the hospital if the WBC count drops too low.

    I've been meaning to ask you, if I'm not being too personal? How are your children doing with this? I know you have a young son who must have been very young when this all started for you. How very difficult that may have been. I have no children, but I have wonderful nieces and nephews (on both sides). Several of them are having a difficult time with this...especially 2 of my nephews who are very close to me. One especially is hurting. He's so close to me, and this is really hard for him. He has 3 kids of his own and a wonderful wife...just don't know how to help him. He lost his first wife to leukemia in their early 20s, and this surely must bring back memories. I worry about him, but he's strong and has a loving family.

    Well, I have to go and get ready to go and get my shot. I hope you have a marvelous day!

    Jan

  • gcpommom
    gcpommom Member Posts: 60
    edited May 2010

    Hi Jan.  I think the 5 messages per day is only until you've been a member for so long or made so many posts, then you can post as often as you want.

    I'm glad your first tx went well.  It does take all day, I remember that.  I wonder if they gave you Ativan...they gave it to me, and that med can make you forgetful until it wears off...they use it with anesthesia and it causes kind of a light, temporary amnesia effect.  And it makes you relaxed and sleepy, lol. 

    I remember the constipation was bad...even with the laxatives, do they have you taking something?  I think they told me to take Senecot (sp)?  I would take it religiously, it didn't do much good to wait until the constipation became a problem.  It's funny about the prune thing....my dad makes his own 'stewed' prunes now, after my mom died, I had to look it up online to see how to do it, and now he does it himself.  Turns out it's just prunes, water, and a cup of sugar microwaved.  Looks "yummy", NOT!  But he likes it.

    I never actually threw up during chemo, but did have the nausea.  They gave me Compazine to take at home, but it made me too groggy (but it makes my daughter hyper, go figure).  I didn't have a huge problem with nausea if I took the meds.  I had one friend though who threw up constantly during chemo no matter what drugs they gave her, so it can really vary from person to person.  Hopefully, you won't have a problem with it.

    Ah, Neulasta...hadn't thought about that in a while (I didn't have the Neulasta with the Taxol, only with the AC).  My blood counts only dropped low once, so I did pretty good.  I do remember being achy though. 

    Yea, it was hard telling my son, he was 11 at the time, my daughters were in their 20's so they knew.  He did well with it as far as I know, but he doesn't always talk about his feelings, so I was never quite sure what he thought.  I'm sure it was hard during my roughest point in chemo for him to see me so sick though.  When my hair started growing back in, he loved to rub my head, and still does, lol, since the hair is so soft.  I always thought that was so sweet. 

    Not sure how you can help your nephews with this....I know there is a board here for family members, way down near the bottom of the forum index.  I would check it out first, and if it seems as helpful as the rest of this website, maybe he can find some support there to help him through this.  I think you are doing everything you can already to help him from your end, maybe talking to others who are supporting someone they love would help him out?

    I saw my onc today....pretty uneventful appointment.  I guess everything is good, who knows without scans though.  We mostly just talked, and she pretty much made me realize that in my efforts to be little miss "i'm ok with everything and I'm doing great", I really am not doing all that great.  She seems to think I should talk to a therapist, kind of a post traumatic stress thing.  I know I'm not doing perfect, but I think I'm doing ok, but she thinks some of my physical symptoms could be more stress related (typical doctor thinking in my opinion).  we'll see.

    Hope you continue to feel well, get lots of rest, drink lots of water (I found it better with a lemon wedge in it). 

    Judy