Is there a July 2011 group?

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  • Snoopy73
    Snoopy73 Member Posts: 287
    edited August 2011

    khs - Thank you. Gnite now.

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited August 2011

    snoopy73 - boy I feel your pain.  After my second round I went through this totally weird phase where I had no patience at all.  I had no idea if it was the chemo, or what. I did have a period about that time and maybe it was everything combined but wow, I was not myself at all.  I talked to my Dr. about it and he said "you know...we are messing with your hormones here".  For me it went away, after a week or so, so hang in there. 

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  • ladyboss1997
    ladyboss1997 Member Posts: 202
    edited August 2011

    Good morning, ladies!  I am so glad I have had no problems with my port. I was concerned about having it put in, but am glad I did. I put lidocaine on my port before chemo, and there has been no pain associated with it. I DO have an ugly incision. I scar so easy. I am really going to look like a cancer warrior.  Diana  

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited August 2011

    Hi All,

    I jsut need to write this out.

    I had round 3 on Monday and then got the hiccups for 8 hours. Picked up an Rx..it was thorazine...says for the treatment of schizophrenia, psychosis, hiccups...well it worked after about 40 minutes and then I slept for 5 hours..better than ativan for sure.

    My last chemo is September 9th. It is great to be near the end but I know this ones SE's will kick in soon. I  guess we do what we have to.

    I am thinking of  switching  hospitals...I have had to advocate more for myself with cancer than I ever expected. I haven't had a baseline MRI and I called my surgeon who is not doing a mammogram for a year ( protocal she says) and she tells me that there are 5 times the rate of false positives in an MRI. I just said and what if it captures a real positive and she said she would have her staff put in an insurance request but insurance may not approve it. I said I see that baseline MRI's are covered all over for other people with triple negative and she said that it isn't up to her, it is what the insurance allows. So, I can tell I will be pushing her if this doesn't come through.

    My oncologist is good but abrupt and she and I had to hash it out about me going up to 85%. I finally played the what if it were you card and I find it deeply disturbing that she told me she would go up to 85% if I took on the onus of responsibility if I got mouth ulcers again. Well if I got them at 75% I will get them at 85% but I was the one who found the medicine that worked through my periodontist and used it and told her how well it worked.

    She didn't suggest a mouth paste steroid for the ulcers  and I know my chemo would have been delayed. I sound like I am ranting but I think I want to switch centers just because I want a change too...I feel that I am the patient who is pushing them to give me the highest level of care and although the nurses are great, I find that I am a challenge to the oncologist. you know the feeling one gets when you think..oh they are going to dread that next email...well, I may be projecting but I suspect I put out more questions and concerns than the average patient and this doctors answers are abrupt.

    I hope everyone fared the earthquake in Va OK. I didn't notice it but then I was hiccupping at the time somy body was moving....

    And grumping at children...they learn that we are human that way...may be very upsetting..I still feel bad for yelling at my duaghter inthe car when she was 4 on her way to day care and I jsut could not stand her talking anymore and threw my hand back and managed to hit her inthe face...didn't mean to but have felt guilty about it ever since...I was just so angry at the moment and flying my hand into the backseat was not a good thing. I think she was so hurt after that but sheis 28 now and can use it against me if she ever needs to....

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  • Lindaqs
    Lindaqs Member Posts: 6
    edited August 2011

    Good morning everyone.  Finished up last week with A/C (4 rounds over 8 weeks).  Next week I start 4 rounds of Taxol over 8 weeks.  Although I read through side effects and the differences in between the two different treatments, I was hoping for some feedback on those of you who have tackled or are now going through Taxol treatments.  The A/C has kicked my butt and I am on disability since my mastectomy on April 20.  By the time, I'm feeling somewhat "normal", I'm back in the chair for my next treatment.  I see so many of you who are working while going through chemo and I just feel like somethings wrong with me that I care barely cook a meal for my kids or do a single load of laundry before having to rest???  Any feedback or experience is so appreciated.  Thanks everyone :)

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited August 2011

    Lindaqs...I asked about disability because I feel so exhausted but I am self employed and the process could take months so I would be getting better before I even got authorized. I think this hits everyone differently and do not feel bad that you need to rest more. I find that one week off form work does not feel like enough and when I go back even 6 hours can feel like I am thoroughly exhausted. I do find that by the end of week 2 I am beginning to feel better but still have bone pain and then I am back for chemo again. I may still talk with the social worker about it but I should have done so at the beginning and not when I am  going to get my last chemo. I do hear people say radiation makes them tired but not a lot of other side effects.

    Just listen to your body. It knows what you need.

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  • ellenquilt
    ellenquilt Member Posts: 172
    edited August 2011

    Snoopy:  I did thank him. He's my "problem child" -- the oldest, bi-polar and trying to figure out his life, so I truly appreciate it when he helps.  Don't beat yourself up about your irritable phase -- the treatment for this stupid illness is enuf to make anyone scream.  It's good that you spoke to your kids.  It think they understand a lot more than we give them credit for.  

    khs113 -- I know what you mean about certain foods that just make you gag.  And never did before,  I can't stand the smell of Emeril's spices.  There's something in there that's just Arggghhhh.  Never bothered me before either.  Garlic, thank goodness is not on my hit list yet.  I love garlic. LOL

    Ladyboss: glad your port went so well.  I don't take any anesthetic stuff before they plug me in.  I just breathe in at the count of 3 and it's a little pinch going in.  We do the reverse when we take it out.  But if it really hurt, you can bet I'd be the first on line for DRUGS! LOL

    Painting: Interesting that hiccups is right up there with schizophrenia and psychosis. LOL.  I'm glad it helped you out.  On the other hand it sucks when you have to fight for every little thing you need with your doctors and the hospitals and the insurance people. My oncologist has a pharmacist on his staff who runs interference with the insurance companies and so far has managed to make my life easier.  I'm fortunate to have decent insurance, for now, and I'm grateful that so far I've been able to get all the meds and tests that I need.  Of course, that could change with a contract change, so I'm hoping to get through the year without any of those problems.  You need to go with your gut on this one I think and if your oncologist is stressing you you might want to look for one that doesn't and will work with you. Just my two cents.  I won't work with a doctor that doesn't listen to me.  I feel that is has to be a partnership.  

    Lindaqs: Congrats on finishing Round 1.  I was on Taxol with Herceptin but was allergic to the Cremaphor (the binding agent for the Taxol) so I've been switched  as of last week to Abraxane which uses a human protein to bind the drug. Allergic reaction for me was palpitations, high blood pressure, nausea and really, really bad lower and midback pain -- like back labor.  Push of steroids and benedryl cleared it up in 15 minutes and I did a little better with a slower infusion.  Onc sent me to the allergist who suggested Taxedere, but we went with Abraxane since my insurance will cover it and it has less SEs than the Taxedere.  We hope.  I think we're going to  to go with the slower infusions in general going forward. Even with the herceptin.  I'm not in a rush once I'm there for chemo, so they might as well do it slow and steady and avoid some of the reactions.

    I start back to work fulltime on September 6, but I have an understanding team and boss and they will work with me.  I can work some from home and I will probably use some sick time to take off the remaining Fridays (I think it will take 4 of them) for infusions so I don't have to stress. Once I go to every three weeks, herceptin only (at triple the dose I have now) I'll have to see how I feel.  Everyone is different and what kicks one person to the curb might not affect another.  You do what you need to do for you.  I nap a lot during the day now.  I have to see how that works once I go back in September and make adjustments to my schedule as needed. Bottom line is I have to take care of me first.  The job after.  

    Again, lovely weather today.  Post tremors.  LOL.  My brother lives in southern Calif. so I now emphathize with their earthquakes after yesterday's shaker.  Didn't get out to do anything I wanted to do yesterday so today hoping to grab my mom and take her to Barnes & Noble for books coffee and then out to lunch.

    Here's my red hat that I made while sitting on my a$$ all day yesterday.

     

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    Ellenquilt - I love the purple flowers on the hat!  I bought some yarn and crochet hat patterns and will be giving that a try too.

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  • misswim
    misswim Member Posts: 931
    edited August 2011

    Well, after all the yucky SE's and fighting a terrible tummy bug, the onc is giving me my last A/C today!!!! A day early but I am so glad to get it done!

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  • ellenquilt
    ellenquilt Member Posts: 172
    edited August 2011

    PhillyBird: If you'd like some extra patterns, just PM me and I'll send a bunch your way. 

    Misswim: That's great! Good luck! 

    Off for some retail therapy! Catch you later. Wishes for a great SE free day to all. 

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2011

    Hi ladies,

    Just popping in here to remind you all of the main Breastcancer.org site and the Managing Chemotherapy Side Effects page. It has links to common side effects of chemo, with tips on how to manage those side effects.

    Hope this helps!

    --The Mods

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  • khs113
    khs113 Member Posts: 105
    edited August 2011

    Hi Paintingmywaythru---Mentioned your concerns to me doc this morning before chemo and she said when something like mouth ulcers and other SEs reach an extreme point it's not unusual to cut back on chemo. She said they don't want the patient's health compromised on top of the chemo. But I agree with you that if you're not happy with this hospital and not comfortable with your doctor you should try and make the switch. So you have any doctor friends or people who have been through this that can recommend someone else, it only to get a second opinion. I found my docs thru friends in the health profession and a woman who had breast cancer 5 years ago and they all mentioned the same practice and it was a no brainer. We have to major facilities here in Ann Arbor that are both excellent but The University of Michigan is much better at treating the unusual or rare while St. Joe's is excellent with the every day kind of cancers. I've been lucky so far with the care at St. Joe's.

    We have a grown son that has some special needs and so we've been having this battle with doctors and specialists his whole life and there's nobody who is a better advocate for you than you. It's just not fun adding this stress on top of not feeling well. Wish I could be there to help out. Hope you find the right doctor and staff.

    Krista

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  • Snoopy73
    Snoopy73 Member Posts: 287
    edited August 2011

    Hi ladies; I just updated my first post with all our chemo dates...

    Thanks Rabbit:-)

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited August 2011

    khs113 Thanks so much for your follow up and suppport. I am going on my gut instinct here. I don't think things had to get so bad the first time.  I wasn't armed with all the tools to fight off the thrush and mouth ulcers.

    I do think my doctor took everything appropriately seriously and got me good care. I may have more of a personality issue with her than I have a competence issue. I have had to do more advocacy than I would like and I feel that I have gotten really good care at this hospital before but this time around I ran into the problem with internal bleeding with my lumpectomy that landed me 3 surgeries and 5 days inthe hospital and then I went back to work too soon...my fault...money worries...and ended up on bedrest and so on... I was less than at 100% at the start of  chemo becasue of this.

    I am trying to be very proactive this time with watching everything. I think I have figured out a lot but clearly need to rely on my oncologist for her medical expertise. I have 2 doctor friends who are retired from this  hospital who think very highly of it and the staff. So I think it is more me. I have a friend who is a doctor at MGH who also thinks that all the area hospitals are using the same treatments and he suggests I go where I  feel most confident.

    I have been advocating for clients for many years as a therapist and have been very successful....actually do a lot of work with special needs...go into school systems, write reports, help families secure outside placements, etc., but I have not had this much frustration as it wasn't me I was worrying about.

    If I hadn't caught that chemo orders weren't written to decrease my second chemo to 75%, I would have been given the full dose.Luckily i asked the nurse and she stopped everything immediately and said I would have to wait until the oncologist retruned from vacation. She checked my records and saw that I was correct. I respect  that the oncologist took full ownership of this but it screwed up my schedule and does make me feel that I have to question everything.

    As to radiation, the question I have is will it be virtually the same at any major hospital?

    I would  think so but I will look into this when I meet with the 2 other radiation oncologists.

    And, my surgeon who discouraged me from getting a  baseline MRI today because insurance wouldn't cover it, and said there are 5 times the amount of false positives and I would have to go through that stress, maybe even another biopsy, agreed to ask her staff to follow up on it and insurance approved it immediately....so I see that self advocacy really pays off. I have read that a baseline MRI of both breasts is a good way tobe able to have information should anything crop up later. I guess I am willing to take the risk that I will be anxious and worried that something else might show up. I would rather have them have a baseline in my files. I hope I never need it.

    Snoopy 73..that must have taken some time. Thank you...wow...good for you.

    Misswim...good for you..you have made it....

    Ellenquilt...fabulous hat....looks beautiful on you.

    Have a great day all you wonderful ladies.

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  • dexxy
    dexxy Member Posts: 229
    edited August 2011

    ok I know I'm a dork but I've seen you guys asking about dates.....chemo fog is there a link? 

    mine 7/7, 7/28, 8/18, 9/8

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  • ANA_424
    ANA_424 Member Posts: 109
    edited August 2011

    Hi all - I've been reading and glad to know what is going on with everyone. Trying to catch up on it all now. The last couple of days I've worked from home and just felt very tired and little appetite. Overall, though, not so bad. I'm just trying to give in to the fatigue and ickiness when I have to instead of fighting it and that seems to help me not feel too frustrated.

    Sounds like everyone is ok post-earthquake and pre-hurricane. Man, sometimes things all just hit at once, don't they?

    Today I went to Gilda's Club for a pilates class. They have both pilates and yoga here once or twice a week. The class was really short today (teacher had to leave early) which was fine with me since I was so tired. It did feel good to do something physical. Hard to explain, but I just felt a little better. I know rabbit has talked about Gilda's Club and I second the suggestion to find one close to you if possible. They have a lovely facility here and I hope to do more activities as I feel up to it.

    I have to say how much I admire all of you going through this and also taking care of children, families, anyone else. Just getting through treatment can really take it out of you, so please give yourselves a break in any way you can. I don't have kids, but know they can wear down patience under the best of circumstances :-). I agree that letting your kids see that you are human is not all bad.

    Frances - really interesting about your tumor testing coming back different - but that's great! Hope you are feeling comfortable with the results now.

    bcisnofun - I'm really not sure how long I'll need off work for the exchange surgery. For the MX, I took two weeks off work and was fine to go back at the end of that time. I'm going to just plan for that again. If I can go back sooner - or start back from home - then all the better. Exchange is supposed to easier (although I'm also having work done on the other breast), but I don't want to underestimate. I've given up on the idea of any vacation this year - will make some great plans next year to make up for it. Hope your last treatment goes well tomorrow!

    ellenquilt - Great that your energy returned and you had a good day! Hope you enjoy the movie with your Red Hat group. I love both of your wigs, by the way. The punk one is fun! And great hat :-)

    J-bug - Hope the move on to Taxol goes well!

    Catron - Hope you are feeling better. :-(

    paintingmywaythru - Man, hiccups! Who would have guessed! As far as your onc goes, listen to your gut, and try to find a situation you can be comfortable with. One of the really hard things about this journey is that we lose control of what happens to us. We also have to put a lot of trust in a lot of new people (medical professionals). The trust thing is huge. I wish you the best in finding a solution that works for you.

    About the MRI - I had one just after I was diagnosed. They said something about doing it because I was diagnosed relatively young, have dense breasts, and family history, etc. The MRI did find another tumor in the same breast that was not seen on mammo or US. I've also read about false positives, so that is a risk. But it gave me peace of mind that they did not see anything in the other breast.

    Lindaqs - About going on disability or not - everyone is going to respond and recover differently. I think the smartest thing is not to second guess, but to allow yourself what you need to heal. I have a computer job that I can do from my sofa some of the time, so it's not like I'm out doing heavy lifting when I go to work. I also have not been the best employee the last few months, but my boss/coworkers are very understanding ;-)

    misswim - Congrats on being done with AC! Wishing you a speedy recovery from this tx and better things ahead :-)

    Thanks rabbit and Snoopy for getting our tx plans posted!

    Ok - I know I've missed some things I wanted to comment on, but I'm blaming it on chemobrain. Hang in there everyone - you don't have to feel good or strong or energetic or positive all the time, but know that you ARE strong and you ARE getting through this - one step at a time.

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  • kk11
    kk11 Member Posts: 210
    edited August 2011
    Ana - I would do a pedicure, but I had a few people tell me their nails fell off with Taxol, so now I think I'll wait. I'll have to figure something else out to treat myself. DH did promise me a root beer float once I finished AC, but I'm waiting for the big craving (I had a craving before my las AC treatment, but not since go figure!). I know it's not good for me, so I have to really want it to have it! I'm glad you have an understanding boyfriend and some friends who can do the low key thing. It sucks to have those other friends that demand more of your time and energy. You have to look out for you though and not worry about their feelings.

    Ralston - It was definitely good to finish AC! I'll post about my Taxol experience below, but it's so far better than AC! Of course, the bone pain has yet to hit, so I wil wait to say that definitively until next week! August 30th is not far away. You are almost done with AC!

    Paintingmywaythru - So far I've been told by all the experts (molar and breast) that the two are not related. We just got unlucky twice I guess. Did you ever have to get chemo for yours or did it resolve itself? I feel like the chemo I got from the molar pregnancy might have actually helped me with the breast cancer because I had negative lymph nodes and I also think the tumor would have grown much more in the 5 months from my CT scan in November (where they missed the cancer) to when it was actually diagnosed. The growth rate at the time of my mastectomy was pretty fast, so I guess in a way, the molar pregnancy was a blessing. But it still hurts and I still wonder "what if". I also wanted to respond to your latest post about being your own advocate. This is absolutely what you must do. A baseline MRI is always a good idea when you're diagnosed with breast cancer. I had mine within a week of my diagnosis. As for your insurance, if they don't want to cover it, fight them on it. This is your life. They should cover it at least once a year. If you're not happy with the care you're getting by your oncologist or surgeon or both, you are perfectly within your right to switch. Who cares if you ask more questions than the average patient? They're there to serve YOU. I always go in with my list of questions and I don't leave until I'm satisfied I've gotten all the answers!

    lovetorun - Don't feel bad if you don't have any SEs! I think that's great! I WISH I could do the biking and running I was doing before my diagnosis, but I'm settling for walks right now. I may try swimming very soon. I just had to wait until my surgical wounds were all healed. They head to re-excise it just before I started chemo since it wasn't healing the way they wanted and then I only got my stitches out a month ago, so I had to wait after that. As soon as I have the energy though, I'm going to be doing more exercise! I hope it keeps up for you through your final 4 treatments. Which regimen are you on?

    Rabbit - That's so nice of your sis to go with you for your treatments! My husband goes with me to all of mine and my dad has come to 3 of the 5 for part of the infusion time. My mom has only come once but she has a hard time getting away from work. She's going to try to come next time and my brother wants to come next time too. None of them are clinical experts though, so you're definitely lucky! So when exactly is your b-day? I hope you're feeling well enough to enjoy yourself! Oh, and AF = Aunt Flow, or in other words, the good old fashioned Period. lol. As for having Snoopy edit her post on page 1 with treatment info, that might work. Or we can start a new thread, but not sure if everyone is up for that.

    Mary - Welcome to the group. Sounds like you're getting the works in terms of treatment. So you are doing 6 cycles of Taxol and then AC (3 each)? Or are you doing all 3 drugs at once? I've never heard of them all being done together.

    Cathy - It's okay to have those not so strong days. I think it was round two of AC that I said "I can't do this. This is no quality of life"  to my DH. He was instantly worried since I'm usually very strong willed and together. It happened again during round 4, but I honestly thought I was going to die since the study drug I got for the sleep study appears to have interacted poorly with my other meds. My blood pressure was low and pulse was high. I was not feeling good. It's important for us to share what we're feeling with our family though because they need to know that this is no cakewalk for us and we can't bottle up our feelings.

    Ellenquilt - Thanks for the virtual hugs. I hate that this disease takes so much away from us too. I'm sorry your crash day was postponed. I hope you are feeling better today since you have to work tomorrow and hit the chair again on Friday. Lol about not having to cook or clean and it tasting good! I think steak is a superfood during chemo since it gives us that much needed protein and iron! And I love the red hat and purple flowers on you! Very cute! Good luck with going back to work on September 9th. Is there any way to go back part time first? I feel like it's making it a bit easier to transition for me. Going back full time for me right now would have been too much.

    Sandy - I've also experienced low bp. It makes it hard to get up and move around. How many more treatments to you have left and what is your treatment regimen?

    Frances - How scary that your first and 2nd pathology tests were SO different! And on the same tumor! It's good that they could explain though why their was such a discrepancy. And thanks for the encouragement. I am less worried about the age and more about the quality of my eggs after this. We did freeze 9 embryos, but that was after I had already had chemo for the molar pregnancy, so who knows how good those are, but at least I have some hope. I'm just upset that I am being told to wait so long to try again for a baby. If we wait 5 years like I was told, then I will have lost 6 years of my life wanting to have a baby. It just plain sucks, no matter what my age. You know?

    Ladyboss - That's awesome that you are doing so well through your chemo! I wish we could all be like you. Don't forget to take time to take it easy though too if you ever have a day where you're not feeling quite up to things. You don't want to burn out! And thanks for the nail tips. I'll have to ask my neighbor, who's a nail technician, if she can pick some Tea Tree Oil up for me. As for bad taste, I find that putting lemon juice in my water (without the added sugar) does help. I don't drink coffee so no answer for that, but pickles actually tasted off for me in the latter part of AC, so I had to stop eating them. Glad they work for you though! I agree with Phillybird that spicy food burns a bit.

    Krista - Wishing you much luck in the chair today. Hopefully treatment #3 is better than the first two!

    Phillybird - You seem to be doing well this week! Exercising and cleaning! I try to get walks in when I can but most of the cleaning is done by DH. I do chip in here and there when I'm up to it, but I never do too much at once. Lol about zapping those errant cells! I agree, we're not going bald for nothing! I hope your nails don't fall off! I am freaked out about that. Take all my hair, eyebrows, and eyelashes, but please spare my nails! I need them! I am also starting to feel some tenderness...hope it goes away. My oncologist said it's rare to lose nails with Taxol, but I know a few people already, so that doesn't mean much!

    bcisnofun - Just saw your post today after having my Taxol session, but so happy to know you were in my corner! As for the counts question, well you're right, we won't know until we go in for another treatment. I'd say continue doing what you're doing until you're told that they're too low. In other words, base it off of the most recent one. Just be sure to wash everything thoroughly though. Did you say your absolute last treatment is on Thursday? No more? If so, woohoo! I hope you do something to celebrate once you're back up and running. :)

    Pinkpalette - I too wish the pre-chair feeling could last. It will once we hit our final treatment though! I know you've got the herceptin, but I do hear that it's better tolerated than the chemo. You can be the judge of that though. I hope your SEs get better quickly. I am all too familiar with all of it. :(

    J-Bug - I just had my first Taxol yesterday. So far it's been better than AC! I may change my mind about that once the bone pain hits, but I'm staying optimistic! 1 Taxol down, 3 to go. You will soon be able to say the same!

    Snoopy - Have you looked into disability benefits in your state? I was able to get 12 weeks paid disability without having to tap into vacation (they put it all in one bucket at my work, so no separate sick days). Now I'm back part time and my disability continues for the days I'm not working (but I do have to use vacation to supplement disability at this point - about 10 hours net every 2 weeks after I earn some back by working). That should get me through the rest of my chemo and a little past that. Anyways, check it out because you may be entitled to benefits. And thanks for the encouragement. Like I told Frances, it's just hard when I have no idea if the embryos we froze will work or whether I'll get my periods back after all of the chemo. I can only hope. As for the kids, I'm sorry you're having such a tough time and they're probably too young to truly understand. Try not to feel bad though. It's okay to have your off moments and your family will forgive you. This bad time will pass.

    Catron - Sorry you're feeling so lousy. I'd let your oncologist know about the tenderness if it continues. I believe it took a few weeks for me to really get used to it, but it shouldn't last much longer than that. And I never had any numbness, so they may want to make an adjustment for you.

    Honey - Hope hurricane Irene stays away for you!

    Lindaqs - I just started Taxol and I'm doing okay so far, but it's only day 2. You will probably sleep in "the chair" next week while getting your treatment since they will put benadryl in your IV. Don't fight it. Just go with it. It actually passes some of the time quite nicely since you're there much longer than with AC. I haven't had any nausea, though I did have a little lack of appetite last night. I'm thirsty, but nothing that extra fluids won't fix. The bone pain will hit tomorrow or Friday. The bone pain from Neulasta is usually mild for me, but Taxol is expected to be worse. I was told it starts about 3 days after the infusion and lasts for up to 3 days. That sounds about right from what others have told me. As for not being able to do basic things, don't feel bad if your'e on disability since everyone has a different situation and responds differently to chemo. I was on full term disability from my mastectomy until just last week. The only reason I'm back at work part time (I work the 4 days before my next chemo) is because I ran out of FMLA and don't want to deal with COBRA. Otherwise, I'd rather be off too. I've been a little tired with Taxol, but it's not nearly as bad as AC so far, so hopefully you'll be feeling better soon.

    Misswim - Congrats on your last AC treatment! Hope it's a SE free one!
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  • kk11
    kk11 Member Posts: 210
    edited August 2011

    Missed the last two posts...

     Snoopy - Thanks for putting our schedules on the first page!

     Paintingmywaythru- Way to advocate for yourself!

     AFM - First Taxol yesterday. 1 down 3 to go and then done with chemo! I feel like things are starting to turn around a bit. I'll see how the next few days go since the bone pain will hit and I don't have the neuropathy yet, but I am sure it's coming. But, today is good other than being thirsty and tired. I am going to take what energy I have and hit the grocery store with DH. We are out of some of our staple foods!

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  • J-Bug
    J-Bug Member Posts: 626
    edited August 2011

    paintingmywaythru: I agree with your thinking on changing doctors. They know enough about the treatment plans to get up to speed quickly as soon as they can get your charts.

    As for the MRI, I am very surprised to hear that it is a problem. I had 6 during the diagnosis process, 1 breast MRI to start because they were having a hard time seeing with ultrasound what the size of the tumor was and if it was 2 smaller or one very large. After a PET scan they found something on the left side, so they did an MRI biopsy, then an MRI of the pelvis (then a CT guided biopsy of pelvis) and one of the spine, and in the very beginning there were two MRI biopsies on the right side on 2 different dates. They were finding things to check all over me, but fortunately in the end, it was all in the right side, one very large tumor (over 8 cm), but at least just one contained area. I was exhausted trying to keep up with work and all the incessant testing, but I was SO glad to go into treatment with stronger knowledge of what was going on within my body. 

    So, maybe the difference is the kind of insurance you have. As a self-employed person, is it possible that your insurance just doesn't cover as well? With all the employment problems I have had, the upside is my husband seems to carry good insurance through his work. I am finding one bill that is getting rejected for around $7200 that I need to find out more about, but other than that, things are getting covered well.

    Is there a cancer support group in the area where some of the people might be able to tell you more about some of their experiences with the docs? Also, you could put out a new thread that you are looking for people in such and such area to give you their recommendations on docs. I am amazed at how many people I am finding on here from the all the areas of the country that I have lived.

    Good luck! I know how much work this can be, and now that you are the patient and not just the advocate, it is a whole different ball o' wax!

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  • Izzy325
    Izzy325 Member Posts: 59
    edited August 2011

    I am so excited that some of you are wrapping up. Very encouraging to see that time has passed. I had #3 TCH today of 6. Friday and Saturday will be a mini "he!!" but one step closer. I had some good-ish news today. The lump on my throat. I had the ultrasound Monday and found out today that it is likely a goiter. No tx plan yet but at least it's not cancer by the initial report. So Whew... And hoping we are a step closer to figuring out how to minimize my SE. The kidney bleeding is known to be progressive with each tx. So she reduced my treatment this time. Also had mild mouth sores with tx 2. And similar GI pain that Rabbit described. So with extra hydration on Friday and reduced dose.... Hoping to do a little better this go around.

    Sorry I have not responding to much of your posts but I am reading... and laughing .....or sympathizing. Love the red hat and wig pics LOVE them.

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  • J-Bug
    J-Bug Member Posts: 626
    edited August 2011

    paintingmywaythru: I also meant to add that I had a muga scan and breast MRI after first 2 AC treatments and then I just did another muga and MRI today after 4th AC. I was told that the plan was to continue this every 2 treatments until chemo is done. So this will be a total of 4 mugas and MRI's just related to checking progress during chemo.

    I don't know if the size of my tumor is a factor in this decision. I thought that he was doing it to check the effectiveness of the meds. Also, I will not have surgery until after treatment, which will be a mastectomy, so that may be a factor as well. Or, my surgeon keeps saying that the AC and Taxol dose dense is one of the toughest treatments on the body, so I think that is why we are continuing with muga scans - but that is for looking at the ejection fraction rate of the heart, but maybe it plays into the MRI's somehow as well.

    I hope that helps to have the whole story! 

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  • J-Bug
    J-Bug Member Posts: 626
    edited August 2011

    Lindaqs: There are two threads that you might want to see that talk about side effects of Taxol. The first one also includes Herceptin. The 2nd one I started because I had some specific questions in preparing for my first one this Friday. Hope this helps!

    http://community.breastcancer.org/forum/69/topic/772044?page=1#idx_12

    http://community.breastcancer.org/forum/69/topic/773117?page=1#idx_23

    khs113: I am from Kalamazoo and Battle Creek. I was born in Kazoo, grew up in BC, moved to KY for 10 years, then moved back to Kazoo for 15 years. I have a little love affair with Ann Arbor. My degree is in painting and graphic design and I always wanted to go to U of M for grad school, but got sidetracked. I love to go there for the art fairs, they are like nothing in the world. I studied in Italy for awhile, and I still think that those art fairs come in as a close 2nd in fabulous to my time there.

    Also, my daughter was at the Children's Hospital there for around a month. She had a congenital heart defect that she had repaired, but the surgeon made a mistake and cut a cord loose which they thought was a very large clot. So they put her on Hepron and started preparing us for sudden death or any organ failing, aneurysm, etc. She spent close to a year on Coumadin, covered in bruises while learning to walk. With all of that, I still felt like it was such a wonderful facility and staff. We were able to stay in the hotel that is attached to the hospital on the same floor. So I was sleeping at my daughter's bedside who was 9 months, and my husband was keeping up with our son who was 24 months and we would trade off every so often.

    If I could pick a city and jobs were not a concern, Ann Arbor would be very high on my list. Sorry for the meandering, but I just wanted to share my love for your city! : ) 

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  • khs113
    khs113 Member Posts: 105
    edited August 2011

    J-Bug Thanks for the love letter to Ann Arbor. I moved here in 1971 and moved away in 1973 and came running back in 1974 and have been here since. In 1984, I married a lawyer who grew up here and we have a son who probably knows more people that we do put together. We feel very blessed to live in a town with such great medical facilities these days. My husband was diagnosed with throat cancer this past January and while most hospitals operate first and then follow up with chemo often with disasterous physical results, U of M has a preeminate radiologist who basically eliminates the surgery portion with radiation and chemo combined. 97% survival rate!!!

    Next time you're in town please feel free to get in touch. Would love to meet a fellow survivor.

    Krista

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  • dexxy
    dexxy Member Posts: 229
    edited August 2011

    Izzy325-good to hear the lump is not a tumor, congrats.  Interesting enough today i was doing so  me research on BC and as some of you know thyroid problems have a direct link.  But here's the interesting thing.  Have you had your Iodine level tested?  Iodine is directly related to they thyroid, and a deficiency can be sure link to BC  I have an article if you would like to read it just PM me with email address and I'll send it.  Hoping you get through the weekend as smoothly as possible, thinking good thoughts

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  • J-Bug
    J-Bug Member Posts: 626
    edited August 2011

    kk11: How are your counts doing? Have you had to have any transfusions or anything else?

    Anyone else have any issues with RBC or HGB levels? I started a thread on this. I just don't want to slow down the treatment plan. This stuff takes such a chunk out of your life, I want treatments to keep moving forward. My RBC yesterday was 3.2 and my HGB was 9.5 and I do my first Taxol on Friday.

    Check it out if this pertains to you.

    http://community.breastcancer.org/forum/69/topic/773630?page=1#idx_7 

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  • ladyboss1997
    ladyboss1997 Member Posts: 202
    edited August 2011

    Yesterday I had blood drawn for the BRCA1 and BRCA2 test. My onc expects it to come back negative, if my insurance will even pay for it. I want every test that insurance is willing to pay for. Di     

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  • ANA_424
    ANA_424 Member Posts: 109
    edited August 2011

    Izzy - I'm also glad to hear about your thyroid lump. The whole thyroid connection is interesting to me, too. My levels have been tested and I'm told are within normal range, but I've had two cysts - one palpable and one only seen on US - biopsied in the last few years. They have scheduled me for thyroid US every two years now.

    ladyboss - I think BRCA testing is more common for those with a BC diagnosis. I'm not sure, but it does seem to be useful info for treatment plans. In my case, because of family history, I had the test done a couple of years ago and it was covered by insurance. It was negative, which is good, but I think it also meant they were not as agressive testing me as they could have been. In retrospect, I wish they had done MRI or ultrasound on me before there was a problem with the mammo. Hindsight . . .

    About Ann Arbor - I've never actually been there, although I hear friends say many good things. My only recent connection is a fabulous gift box someone sent to me from Zingerman's Deli. Would love to go there in person one of these days :-)

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited August 2011

    last chemo done today - yeah!!!  My nurse and I both cried when I left.  She was so wonderful, but I told her I NEVER want to see her again (in this venue).  I'm so glad it's over.  Now for the decline and climb back out of the chemo hole one last time (hopefully).  Port scheduled to be taken out on the 9th.  Can't wait.  Thinking of you all and wishing you a SE free day.

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  • ANA_424
    ANA_424 Member Posts: 109
    edited August 2011

    Yay to bcisnofun! Another one done - congratulations!

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  • ellenquilt
    ellenquilt Member Posts: 172
    edited August 2011

    BCisnofun:   Congratulations on your graduation!  

    AT work today -- good all day but now at 2:30 I needed a compazine.  What's up with that? 

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