April 2015 Chemo Crew... Starting in April? Please join us!

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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Little Blue - I SOOO can't wait. 2 weeks til final chemo. Although then a break and radiation starts. Should be done by Thanksgiving!!!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Sue! Awesome! Are you doing Dose Dense?

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Anybody got any hair to report? I've been staring at the March group's fuzz like a teenage boy stares at playboy LOL..

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    I just came back from my meeting with RO, and it was really great. I may have mentioned that RO is a friend of mine, we met online in a "working moms" mailing list. There were a bunch of us that lived in the area, so we decided to meet up - I used to see her more when our kids were younger, our contact is more tangental now, but she's a facebook friend, and I reached out to her when my mom was diagnosed with DCIS.

    Anyway, looks like I'll have 6.5 weeks of radiation. She scheduled simulation for after I get deported - so not until the 19th, and then won't start treatments until up to a week after that. I'm not thrilled that it's going to take so long, but glad that I have some target dates. Now I have to figure out how to incorporate this with going back to work, getting kids to school, etc., but that will come, and I'm going to try to chill about it for now. No use paying interest on money I haven't borrowed.

    She said that the first 3.5 weeks will be like nothing - "walk in the park" so to speak as my body continues to heal from the chemo, but radiation has not impacted it yet. Then she said the last 3 weeks I will get the sunburn - she went into some detail about all the possibilities, but then said that she doesn't see them very often or at all. She said that she would do targeted radiation around where my tumor was starting around 5.5 weeks.

    One of the things that I did not know what that radiation increases risk of lymph edema. She said it actually doubles the risk. She thought my risk would be low, but cautioned me away (well, first from reading stuff on the internet) from duing any repetitive arm movements or lifting with no breaks. She listed off a bunch of examples where it became an issue because someone raked for hours nonstop, or wallpapering, or packed a whole office nonstop. The big thing was to only do things for 25-30 minutes at a time, then rest. This is also more in the second half of radiation. I'm probably not likely to have anything like that come up, especially since I'll be back to work by then, but it was still good to know.

    Gwen is feeling a bit better - she's had 3 doses of antibiotics, but I'm still keeping my distance.

    My SE are still not bad today - feeling a little more medicine head/jittery, but not really to even complain about. But, the tastebuds are still dead! I hope that one doesn't last too long. It's so weird to eat something, especially something that you know tastes so good, and have it be dull. I keep wanting to add salt to everything, but then it just tastes like salt :-(

    I spoke too soon about my toenails, I went to cut one of the purple ones last night, and it started coming off, but I couldn't get it fully off (still stuck at bottom), so I have a bandaide around it right now so I won't catch it on everything. But, it will be gone soon.

    Lynne


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  • Rpayton
    Rpayton Member Posts: 235
    edited July 2015

    Dizzpark glad to hear that whole ordeal is getting better next door and doggies removed. Gosh would have thought police wouldn't leave animals like that. I believe in IL they send them to animal control and our local shelter holds them. Poor things so much stress on them too.

    gingeel feel better! I'm not looking forward to next week but I know it's the last and we are all getting to the peak now going down hill everything will get easier for all us. We will heal. Patience is so hard.

    Lovilynne sounds like you got the full scoop on radiation. Thanks for sharing! I meet RO Aug 20. I'll share what info I get and we can compare. Bummer on those toenails. Geeessshhh hope it goes off easy and gives you no problems.

    kbeee nice to meet a new BC friend!!! Especially one in same diagnosis. You will be such a great mentor and friend to share. Enjoy lunch!!!

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  • AndreaC
    AndreaC Member Posts: 220
    edited July 2015

    Hi everyone!

    Lynne, so sorry your daughter is sick. Sending healing vibes!

    Renee, congratulations on finishing chemo!!!

    Pegsurri - I too had a BMX. It was really not that bad...going through chemo is worse. The most important thing is to do your exercises religiously! You do not want to lose any mobility. I did not shower for two weeks...just had sponge baths and my daughter came over and washed my hair for me at the kitchen sink. You will not be able to raise your arms above your head for a while. I had four drains - I wore loose button-up tops and pinned the drains inside my tops. I still felt pretty bulky but people really did not notice. I did go out for short periods but did not drive till my BS okayed it (after two weeks). Re pain - again, not bad in my case. If I moved the wrong way I would have a lot of pain but otherwise it was quite tolerable. Sleeping was okay, as long as I had pillows under both arms and took a pain pill before going to bed. Good luck to you!

    All is well with me. My radiation has been postponed twice now...it was supposed to start July 28, then Aug. 4...now it's Aug. 14. They "need more time for planning". I think it may be because I had bilateral BC so will be getting radiation on both sides. But the RO has known this for weeks so I don't get the delay. But I would rather have things well planned than rush into something that may not be in my best interest.

    In the meantime, I am feeling much more energetic since I finished chemo and am enjoying the summer!

    Andrea


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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    Congratulations Renee! So glad your son came.

    Kbee - how nice to have made a friend that's a real live person!!!

    Everybody have a wonderful weekend, as SE free as possible

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited July 2015

    met my ps today he was awesome and very comforting! I guess I will be doing expanders inflate once a week for 4 to 5 weeks then the implants go in then I will have another surgery for nipples and he does tattooing in the office saw pics they looked great! He said I will be needing flex hd which is like donated tissue from other people kinda gross anybody have experience with that
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  • greenae
    greenae Member Posts: 540
    edited July 2015

    hi steph

    I had Alloderm placed at time of mx and TE insertion. The Alloderm (yes, from dead, sterilized cells), acts as a hammock to hold the TE in place, and later the implant. I haven't had any problems. The first fill was 400cc at mx, then 50cc every 2 weeks til I got to 600cc. I had the fills during chemo. No biggie. A little soreness and heaviness, i took a valium at night if the spasms kept me up. The implant is a lot more cmfortable. I am happy to have the Alloderm keeping it where it belongs. Lol. Good luck with your recon plans!

    Arlene

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  • Addie29
    Addie29 Member Posts: 307
    edited August 2015

    I'm currently going through the expansion process. I just had an expansion yesterday and I won't lie it's painful. I keep having spasisms BUT I find that heat helps with the pain. Whenever I had an expansion it always made my back hurt. J haven't had any issues with them healing wise and was going in every 2 weeks up until recently. I spaced the last one 3 weeks apart and will do the same For my last. Right now I am 600 ccs which is about a full c. I'm wanting to go in for one more then be done with it. I too have the alloderm. They won't do the swap until chemo is done. My ps said anywhere from 2 to 6 weeks post chemo. Good luck and if you have any questions about this feel free to ask me

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  • Addie29
    Addie29 Member Posts: 307
    edited August 2015

    oh and also I have my nipples- but I will need an additional surgery to fix my right side because that breast was a little larger and the nipple say lower on the breast so I will have to have that fixed

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    thanks for the response girls I never heard of alloderm until today my ps told me that j will get fills every week yikes sounds like it's going to hurt! I am going with a c I want everything gone so no nipple sparing so he said I will be filled 5 times then ready for implants sounds quick to me

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2015

    Steph, I think alloderm is pretty standard now. I had that as well.

    Addie, I hope your get some pain relief! My PS filled a little at a time, so I never had more than a day of achiness.

    Greenae, Nice to see you back. How've you been?

    Andrea, I am glad this down time for you is during the summer when you can enjoy it, rather than in the cold of winter! I hope they get their plan in place soon.

    Lynne, How cool that you know your RO! Sounds like she gave you nice details. I wish all of them did that. I hope your DD is feeling better. Darn toenails. I have not looked at mine in a week. Last I checked they were ok, but I know that can change!

    Littleblue, Get on Facebook...use an assumed name if you have to. We've been posting pix each week, but only the group can see them there, not the whole world!!! I've got some nice fuzz going on. Now the brows and lashes are another story. They have been gone for about 7-8 weeks with not a hint of growth in sight. Sigh. I have 2 more Taxols left. August 3 and August 11. I go for my rads planning on Aug 21, and will begin rads on or around Aug 25.

    Dizz, Glad the dogs are taken care of. I hope you have calm in the neighborhood now.

    Gingeel, I hope you are feeling better soon. My teeth ache sometimes too on Taxol. I figured I was the only one!!! Glad to know I am not alone in that, but sorry you are dealing with it too.

    I had a great lunch. We chatted for about 3 hours!!!!!!! Still feeling good overall. I have no numbness in my toes, but I do have a spot on my heel the size of a tennis ball that's numb. My tongue also gets numb for about 3-4 days the last few rounds and I feel like I slur my words! Thankfully these side effects are more annoyances than things that are horrible. For a while I was afraid that Taxol was affecting my vision, but then I realized I just needed to change out my contacts. I have disposables that I wear for 2 weeks at a time.


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  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    my hair never completely fell out I have a fuzz and now it's pretty long fuzz my hubby calls me fuzzy I know it's funny looking but I refuse to shave it off I told him it would take months to grow this back..my eyebrows are still here a little thin and all my eyelashes still here knock on wood they stick around after last treatment next week

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  • GingerChi
    GingerChi Member Posts: 252
    edited August 2015

    Gingeel and KB, you're not alone, my teeth are killing me tonite. I cant sleep because I'm aching all over, including my mouth! Ugh!

    KB, your lunch sounds like a nice time...how great that you two got to meet!!

    Littleblue, Hoping your hubby is back home safe and sound soon! My hair never totally fell out either, I always had some stubble. Now its getting thick tho!! I'm not to the halfway mark with Taxol yet, I had to take a 3 week break after being in the hospital, so I'm lagging behind you other chemosabes!! I'll get #5 next week. You should join us on the facebook page!

    Lynne, Glad your daughter is feeling better and that you haven't come down with it. Thats so cool about your RO being a friend, I bet that makes the process feel less intimidating! Sorry about your toes....hopefully biotin will help.

    Addie, hope your pain gets better quick, it sounds very uncomfortable!!

    I hope everyone is feeling good and has a nice weekend.....SE be gone!!!

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  • Addie29
    Addie29 Member Posts: 307
    edited August 2015

    pain. Pain. So much pain. It's 3:34 am and I've gotten about 2 hours of sleep. Just finally caved and took some hydros. Damn these expanders. Damn cancer

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2015

    Addie, I hope you get some relief. Can your PS do a little less of a fill each time. You will have to come in more often, but it is easier and you won't have this kind of pain.

    One of my very, very few remaining eyelashes fell out last night. I felt like I should give it a trophy for holding on so long, but I was mad at it because it landed in my eye. Why do they have to go into your eye instead of falling elsewhere???

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  • SpriteB
    SpriteB Member Posts: 49
    edited August 2015

    Hi everyone,

    I was on this board back in March/April when I started chemo but had to step away. I've had a rough time and my anxiety would spike when I would read of S/e's that others were getting. But I'm trying to get back to participating because you are all so supportive. 
    Here's my story (and this is the short version). I've been in the hospital 3 times since April. Two times for neutropenic fever and neutrophils functioning at 0%. My MO doesn't want to use neulasta/neupogen. I don't know why and I didn't want to have those if I didn't need them so I never questioned it. 
    Also, my port never fully healed and around Memorial Day a scab broke off and never fully scabbed over again. I was worried about this and the weeks I didn't have chemo I made appointments with my MO to have him look at the port because even though it didn't hurt I was terrified that it was going to get infected. Well, my fears came true. At the end of June my MO finally agreed that it needed to be removed. The port still didn't look infected but it was visible through the incision. So it was removed and two days later I spiked a 103 fever and had hard shaking chills. I had sepsis! And not just sepsis but MRSA sepsis!!!!!  I was in the hospital for 8 days and on IV vancomycin every 12 hours. This treatment continued for 5 weeks after I was released and Wednesday was my last day of vanco. I was told by infectious disease that mrsa sepsis has a 25-30% chance of recurrence and probably even higher in my case because of the chemo. I'm terrified of this. But he met with my MO and they decided that I was strong enough to have chemo and vanco treatment at the same time. The sepsis was caught early and never "seeded" in my heart and the 3 blood cultures I've had since the vanco started have been negative so I am praying that it won't come back and I can get back to just focusing on the cancer treatment. I have a picc line that will be pulled next week and I told my MO that I will not be getting another port or picc to complete my final 12 herceptin infusions and he agreed.   
    So my good news is that my final chemo was on 7/30!! Yay!!! I'm just praying I make it through the next two weeks without having neutropenia. MO is having me start oral antibiotics on Monday as a prophylactic measure to ward of any bacteria. 
    I do have a question. My MO was on vacation this week so I saw the NP. I asked if I would have any scans or tumor marker blood work done after chemo and she said probably not and that they "don't go looking for things" if I don't have symptoms. I know I was early stage 1a with no lymph node involvement but It seems to me that regardless of what stage, most of you are getting follow up scans. Is Anyone here not having any scans after chemo?
    Sorry for this long post. But thanks for reading!
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  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    wow sprite b I went through a lot you went through hospitalized once for neutropenic fever neulesta kept that from happening again and my port also was infected caught early they started me on vanco and my blood was clear the next day but I am on Antibiotics for a total of 4 weeks have 10 more days to go..I also would like follow up scans not comfortable with the wait and see approach

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  • Rpayton
    Rpayton Member Posts: 235
    edited August 2015

    spriteb just read your entire nightmare! Wow what an ordeal this has been for you. I am so sorry to read all you have been thru. So glad you came back here to share your story. I will be praying that the rest is now smooth sailing for you. Keep coming back to let us know.

    Addie hope you get relief today. Definitely talk to PS about all this.

    Kbeee so sorry about the eyelash. That is the part that has upset me the most. I have always had thin, fine hair on my head so losing that wasn't trauma, it grows back and may come in thicker, bonus. But my long, full dark eyelashes always my best feature. I still have some but they are so thinned out. Eeerrrghhh

    Hang in there everyone with SE. Woke up this morning with awful chemo mouth no taste. But last time....

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2015

    Dprite, welcome back. I am surprised, and appalled honestly that once you had a neutropenic fever, they never gave you Neulasta or Neupogen in later rounds. Sepsis is nothing to mess with. I think you should ask for periodic blood work over the next few weeks so if your neutrophils trend downward, you can get Neupogen before a fever or infection set in. Neupogen doeswork, but it takes a few days to kick in. Most docs do not go scans afterward without reason, though I know some do. It is very frustrating and scary to forever pkay the wait and see game.

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  • Addie29
    Addie29 Member Posts: 307
    edited August 2015

    wow spriteB you've been through a lot. I too am stage 1a and my mo Basically said the same thing about tumor markers and scans. Unless I'm having symptoms they really don't do a whole lot. I'm glad you're done with chemo. I have 5 more taxol left and then I'm done and into recon.


    As for the expanders last night I finally took a Tylenol 3 and was able to get some sleep. I took another this morning so I can enjoy the day with my family. I'm thinking the next fill I will only have ps do a little. I'm already at 600ccs and don't want to be much bigger so I'm going to wait about 3 weeks before I call to schedule my last fill. And I will use this appointment to talk about what's to come next. I'm hoping I can get in as soon as I finish chemo for the swap. My ps is leaving for TX October 1st and I'm really bummed out about it. He said they can do the swap as soon as 2 weeks post chemo- depending on what my lab work days and I really want him to do it and not someone else. I have I think 2 possibly 3 recon surgeries coming up. The swap, possibe fat grafting, and a definite nipple fix- I blame that on nursing my babies for so long- made my right side bigger. Anyway hope everyone has a good weekend. I'm hoping this pain will subside soon and I can enjoy the weekend

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    Addie! Poor dear! I hope the pain med worked and you got some sleep! Experiences like yours are why I didn't get recon- you are one tough chica!

    Kbeee, I hope you found that eyelash and gave it a stern talking to- recalcitrant little beggar! When I had lashes I'd have to stroke them out a few times a day to try to avoid them setting up shop in my eyes.

    Hi sprite, Geeze you and Steph have been through the wringer. I can't believe you didn't get neulasta! That stuff is nasty, but sepsis sounds terrifying. Wonder why your MO doesn't use it?

    I'm in awe of those of you who have enough self control to stay off this site and Dr Google when you see its freaking you out. Me, I seem to seek out the darkest possibilities. It's dumb. If I set up a Facebook account, how do I find the group ya all told me about?

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2015

    Little blue, if you set up a facebook account, PM me and I will send you a friend request on there. I have hte privacy setting so that the group cannot be searched for, and you have to have someone in teh group add you as a friend first, or I can send you an e-mail invite. That's so there are no lurkers there and we can be more free with what we post.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    Sprite- I'm so sorry and appalled at what you went through. I'm glad your finished with chemo now. Hope you start feeling more like yourself soon and this'd nasties stay away for good.

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  • Addie29
    Addie29 Member Posts: 307
    edited August 2015

    just realized this is the last full month I will have chemo!! God willing I NEVER have to do it again!! Or any of you other ladies either.

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited August 2015

    Stephanie! So glad you came back to update us - but also horrified at your story. I hope you have had lots of family and friends supporting you throughout your ordeal. We are all coming to the end now . . . healing thoughts.

    It's great when a "long lost" member checks in - we had 64 April "chemosabes" check in at one time or another in the beginning, but we seem to have dwindled to a dozen or so active members. I would love to hear from Sheila (sheshe3), Fran (fran2014), Karen (Karen30), Jen (mamajancoz), and Allison (allicat1214) - if you're reading, check in if you can.

    Lynne

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  • GingerChi
    GingerChi Member Posts: 252
    edited August 2015

    Sprite, Oh my gosh, so sorry to hear about your ordeal! Glad you're done with treatment and hope you have no further complications!

    It would be nice to hear from some of our group that don't check in often these days! In particular I wonder about x1mel. She went into the hospital after her first infusion and I don't think ever posted again. She's from Alabama too and I think of her from time to time.


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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited August 2015

    A little humor and some hair. So my daughter dressed me up, and while I can't beat the HOT nurse photo that Slyvia posted...I can dude it just fine. Thinking of going to work like this in Sept, LOL. Mom says I look like my brother when he was a teen

    image

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited August 2015

    Positive spirit, I love it! Sounds like you and daughter are having a great time!

    I had expected to not have any hair until weeks after final T/Carb treatment in September, but since my last A/C I seem to have quite a bit of soft fuzzy and some prickly hair coming back. I've waited for it all to fall out again, but it just keeps going. It's coming in either blond or light grey/white (hard to tell) and not as dense. Now that I've put that out in the universe, I expect it will be gone in the morning.

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