September 2013 Chemo Group

Options
14142444647143

Comments

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2013


    Lisa- I am originally from NJ, but visited NYC a lot, and was in the hospital for few months as a kid, with no TV, so people watching out the window was my time passer. You can definitely go bald there and fit right in. Your friends probably don't care, and no one will give it a second glance!


    Kim- Great news on the no chemo! You'll have to report how it goes on Tamoxifen. A lot of us are headed there next.


    70ch- I'll have to try Club soda. Anything to rid my mouth of the dirty gym sock taste.


    JellyK- Glad day 3 was not as bad this round. Hope it gets better each day.


    Josgirl- I hope you and fiancé can work everything out. There have been a couple nights I have had DH go out to play cards with the boys, even though I really wanted him here, just for a sense if normalcy...and because he loves playing cards. I'll be praying all works out for you.


    Sheila- I haven't heard of Halavan. I hope the side effects ease for you. I was on the pill...off and on...for probably 6 or 7 years. I've had 4 pregnancies, and I have 3 kids. I never carried my phone in my bra though I did see a news report a few months back about someone who did, and got a tumor there. I could not carry mine there, well...there was not enough there to support it, and it would have just dropped out of the bottom of my shirt! I was not exactly well endowed. Mine is usually in my back pocket, and yes, if you are wondering, that did just make me assess my butt for lumps.


    LHL- It sounds like you had a great trip, and that you have a top notch surgical team lined up. Your BS probably could not tell the difference in lump size because he has felt so many breasts between then and now, it is probably hard for him to remember exactly what it felt like. I did not have a sentinal mode tested on the opposite side. To find the sentinal node, they inject the tumor with dye to see which node it drains too...it seems testing one on the other side, they would just be testing a random node??? I would ask how they would determine which node to test.


    So my issue of the day is hair...ok, not hair...stubble. My hair seems to want to grow in, but the new stubble that keeps growing in, just falls out when it is about 1/8 inch long. So my head is in this constant state of random stubble. I pull at it all the time when I am hatless and wigless, and am constantly using tape or a lint roller. It drives me crazy! I am glad it wants to grow, but I wish it could either be hair or smooth. This chia pet that has been hit by a broken lawnmower look is obnoxiously disgusting...especially when you throw in the acne on my head. Sorry if I made anyone lose their breakfast on the visual. I guess I am thnkful that I reLly like my wig.

  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013


    LOL KBeee - I told my hubby the other day that I look like a fuzzy coconut. Not all of my hair has fallen out, so what's left is scraggly and sporadic and sticks up. But since it's not bothering me (other than to look at...ha) I'm leaving it. I really don't get it, though... you'd think when my hair decided to fall out, it would all FALL OUT. But no. If I went topless I could probably play a part in a horror movie. :-)


    Ok....is anyone having issues with redness/itching "down there"? I am, and the gyn onc yesterday said it's just from chemo. It's not a yeast infection or anything like that. What can I do? It's driving me crazy and very uncomfortable. She kind of got off on a tangent during my exam so we never really revisited the issue.

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2013


    LHL- I use diaper rash cream down there, and it helps somewhat. I have a new found respect for my kids when they were babies with a diaper rash.

  • kjsimpson
    kjsimpson Member Posts: 445
    edited October 2013


    JellyK,


    I take the Claritin (generic) starting the day before Chemo, so it is well in my system when I get the Neulasta shot the day after chemo. Stay strong!

  • BetterDay
    BetterDay Member Posts: 116
    edited October 2013


    You can add me to the triple negative and BRCA negative list. I have the same questions about how this all started. So many questions with no answers. And I have the same reaction to and fear of chemo and surgery being the end of the road as far as treatment. I was very interested to hear about Halaven and I'm definitely going to do some research on it. I am so sorry to hear that the SEs are so terrible. With regard to rads, my BS said they would do SLNB after chemo and before surgery to see if there is any evidence that cancer cells made it to the nodes. If there is, definitely rads whether I do a lumpectomy or mastectomy.


    Wishing everybody an easy week.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    jellyk - take the Claritin (regular, not Claritin D) at least an hour prior to the injection and continue at 24 hour intervals for as long as you feel the need. If you are replacing a daily antihistamine, just keep taking it! I chose the redi-tabs that dissolve on the tongue because I was tired of taking pills. Also, I could carry them in my purse and take without something to drink if I needed to.


    lighthouse - on the question of radiation for mastectomy - it can depend on how close the margin was to either your skin, or the chest wall. Also, dependent on whether axilla rads are required for a micromet if axillary clearance surgery was not done. The reason for the delay of recon after rads is that the skin damage from radiation inhibits healing and stretching. Doing recon too soon may endanger your results - that is why the delay, and yes, it is normal. They may want you fully expanded prior to beginning rads as the skin doesn't stretch well afterward. I had bi-lat SNB and did have a finding of ADH and ALH in the prophy breast. One thing to think about is both the risk of lymphedema in the prophy side, and the fact that you really should not use either arm for blood draws, blood pressure, etc. So, bi-lat SNB = bi-lat restriction. If you have had imaging done on the prophy breast and nothing is showing, and also knowing that they will do pathology on the breast tissue from that side so they will be able to see if there is any cause for concern in your nodes on that side, it is something to give careful consideration to. Use a squirt bottle for "down there" to rinse off when you go to the bathroom. Adriamycin is caustic so it is important to rinse it off of your skin when it is excreted.


    peacock - Herceptin is only given for those who express Her2+++, it is about 20% of total patients and has no bearing on whether you are hormone positive or negative.

  • josgirl
    josgirl Member Posts: 231
    edited October 2013

    LHL - I agree with Kbee about the SNB - asking how would they identify the SN would be a good question.  And just to emphasize the arm restriction is hard. Port or not I will be getting stuck for a long time in the future and limited to one arm for the rest of my life.  I know they can do the blood pressure and draws on your leg but since I have now been an IV regular and they have trouble with 'good' my arm....no thank you for trying less common methods.  Also in regards to Lymphedema - my first cousin has had 2 primary BCs and developed LE from her second one (which requried no surgery...so not sure what happened but...) and her forearm is double the size of her other forearm and while she says it isn't debilitating it isn't fun.  Really made me be firm about not using my left arm for ANYTHING!

    OK and just to share :) - I cut my hair pixie cutish (donated to locks for love and with my fiancee just cutting the ponytails off so lets just say it looked like a chainsaw went through it).  But I never clipped or shaved - just let it fall out - which led to black pillowcases.  But now with I would say with 99% gone the remainder looks crazy - I could be Jack Nicholson from the mental institution movie.  But I guess I really want to see if it will all fall out and maybe if it doesn't then it may look even crazier growing back.  And maybe TMI here - but today in the shower - yup my hair down there - going going....  Thankfully my eyebrows and eyelashes so far are staying.

    Kbee - I am laughing about diaper rash cream ...who knew?

    And as for me - doing better.  We talked through it which was utterly exhausting to do but reinvigorating in the long run.  The cloud is dispersing. 


     

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    When they do bi-lat SNB they inject the same way they do on the cancer side - they are looking for which node leads primarily away from the breast, not the tumor. The injections I received were at the clock hands noon, 3, 6 and 9 around the nipple, on both breasts. The dye and radioactive tracer lead to the first node away from the breast in the chain of nodes, regardless of the location of the tumor. The thought behind SNB is the first node is the "sentinel" but they are blind looking for it without the dye/tracer.

  • 70charger
    70charger Member Posts: 963
    edited October 2013


    lighthouse. I ended up getting an anti-fungal cream from my Dr. Worked well itch gone next day & mine was extreme.

  • BetterDay
    BetterDay Member Posts: 116
    edited October 2013


    I am having a port problem. When the nurse accessed it this week, it really hurt. It has continued to hurt and is now pink around the accessed side (it is a dual port) and under the incision. It even hurts when I move my arm. Is it normal for it to be irritated? Maybe it is infected? Has anyone else had a similar problem?


    Thanks in advance.

  • kjsimpson
    kjsimpson Member Posts: 445
    edited October 2013


    Vanessa,


    It certainly warrants a call to your doctor's office. An infection could be serious since the port drains almost directly into your heart.


    All,


    Had Chemo today and doctor's appointment. They gave me some additional oral medications for nausea. I'll have to go look, but one or two are steroids that I am supposed to take morning one and morning two after chemo. Apparently they are the pill version of one of the dripped steroids, so help the dripped nausea medication last longer. Will post their names in the morning. Hoping for a better week. Neulasta shot in the morning.


    So grateful for my family and friends. It would be very tough to go this alone.

  • Viji
    Viji Member Posts: 195
    edited October 2013


    My tumour was on the left side too. Another week almost done... Enjoyed reading everyone's posts. Take care everyone!


    Viji

  • DeliriumPie
    DeliriumPie Member Posts: 1,370
    edited October 2013


    good morning ladies. I'm so glad it is Saturday! Got a good nights sleep last night for the first time in weeks. Of course, now I've been wide awake since 4:30. But I do plan in heading back to bed for a while and having a pretty lazy day. Best part about today, no rads! 25 more to go, but not today. I am taking Halaven as a clinical trial. It is currently used for metastatic treatment but they are trying to get it approves as a secondary treatment. I've been having severe fatigue, far worse than any AC day I had. And it lasts for days on end. Also really bad brain fog. I am just in a daze for days. Severe back and bone pain also. I've never experienced such intense pain. It gets scary because since the surgeon rearranged all of my parts, I have a hard time differentiating where pain is coming from. My back hurt so bad the other night that my chest also hurt and I couldn't tell which side it was really originating from. Since everything I'm doing has potential heart damage, I started wondering if I was having a heart attack. I started running off the other symptoms: weak left arm, tight chest, chills, sweating, etc, but I have all those things too between surgery rads and chemo. It's almost comical what a mess it is.


    Kbee, I hope your butt was lump free, lol. Thanks for givin em heck jellyk, makes me smile.


    Hope everyone has a pleasant weekend.

  • Lengbong
    Lengbong Member Posts: 10
    edited October 2013


    I ended up at the hospital for 5 days- neutropinic low WBC 0.4- bacteria infection- gall bladder inflammation and got colocystosiss procedure now I have draining tube to drain gall bladder until chemo is done then I can surgery laparoscopic. Just got 2nd chemo Thursday amd nuelesta yesterday now just gave flu like symptoms I slept all day n night. Hopefully it'll get better I took tylenol for minor pain on ribs.


    My back pain went away after draining my gall bladder. I have my tube for another 4 weeks .

  • 70charger
    70charger Member Posts: 963
    edited October 2013


    Lengbong OH my Goodness. Sure hope you are on the mend now. BIG HUG!

  • alfranco
    alfranco Member Posts: 200
    edited October 2013

    Lengbong- sorry to hear this. I hope you get better soon.

  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013


    Lengbong - What a rough time you've had! I'm so sorry.


    Vanessa - I agree, definitely call your doctor. If it is an infection you don't want to let it go untreated. Sounds like it could be.


    I still have eyebrows and eyelashes, but my lashes have thinned a lot and my eyes water ALL THE TIME. It's annoying. Plus it's hard, because I try to use makeup to disguise the lack of lashes, and then it all just runs off anyway. Ugh. I have very sensitive eyes and allergy issues make them water anyway, so this is just ten times worse. Hmph. If it's not something, it's ten other things!!!!

  • knightzoo
    knightzoo Member Posts: 171
    edited October 2013


    Vanessa, let us know what they say! Sounds scary.


    Lengbong-I hope you are on the mend and stronger everyday!


    LHL, my eyes water constantly too and my nose drips. Annoying.


    I shaved my head Thursday. I feel like a freak. I don't think anything ever prepared you to see yourself bald. But every day is better. Very few people have seen me without a hat or wig. Not even my kids. I know it'll get easier. But not fun.


    Taxol #6 done yesterday, and now I'm on the road watching our oldest play hockey in Colorado and Wyoming. Much needed distraction.


    Have a great weekend all!


    I think left is winning in the poll!

  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013


    knightzoo - I think you're right, nothing can prepare you to see yourself without hair. I still have some sporadically all over my head, but that may look worse than actually being bald! LOL I don't ever go anywhere without my wig or at least a bandana, even around the house. My son told me the other day that he hasn't seen my hair lately. I told him I don't have any hair, and he said, "Well, you know what I mean." I don't know if it would make him feel worse to see my pathetic head or not.

  • Viji
    Viji Member Posts: 195
    edited October 2013


    I have made my peace with the hair thing. We did not ask for any of this and yet we have to deal with it. Accept and move on. I am now the proud owner of two wigs, two wraps and a selection of hats. When i go out I try to make myself look nice because I did NOTHING to deserve this and I am not going to hide in a hole. I - we will all get through this with dignity and pride. Still have some fuzzy hair on my head, most of my eyebrows and eyelashes. One foot forward...


    Lengbong thinking of you...


    Viji

  • hockeymommy
    hockeymommy Member Posts: 77
    edited October 2013


    hi gals,


    LHL- I finish on dec5 too! We are on the exact same schedule!


    For the poll lump was on the right.


    Thursday will be my first of four taxol treatments.....getting nervous but just want to be closer to the finish line!! Have a great rest of the weekend ladies!!

  • PeacockGirl
    PeacockGirl Member Posts: 162
    edited October 2013


    I may not have mouth sores but....... &%$#%^$...... just the last two day mornings it feels like i'm pooping shards of glass :( No blood but I suppose a call to the onco is in order on Monday. I've never had a hemorrhoid or bowel issue in my life. Am religious about taking Colace the days after chemo and have not missed a BM or been constipated since chemo started. Anyone out there know the difference between a hemorrhoid and an anal fissure? They both suck and I don't want either of them.

  • Juli50
    Juli50 Member Posts: 859
    edited October 2013


    Hi Girls,


    Sorry to hijack your thread for a minute. I was in the Chemo in Sept 2008 group and just celebrated my 5 year cancer-free anniversary. I celebrated by renting a cabin for 6 days in the Smoky Mtns in Tennessee and meeting 6 other women from my chemo group that I had kept in touch with through Facebook. As you know by now, there is a special bond between chemo "sisters". No one can totally relate to the chemo experience unless they have gone through it themselves. I wish you all the best during this battle. If you have any questions, I would be happy to answer if I can. One hint for hair falling out... run a lint brush over your head every day, works like a charm. :)


    Juli


    image

  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited October 2013


    Good Morning!


    Today is the Making Strides Breast Cancer Walk. Our team has raised some good amount of $$$ & I have many friends walking for & with me. It will be awesome! My friend from up Maine can't make it, they need to travel to Boston for their grand in the hospital but she SHAVED Her head last night in support! Can you believe that. I am overwhelmed. Are there any Walks in your area?


    SEs: I have the constant drippy nose, & tearing eyes for the last couple weeks. And this week mouth sores.


    Next Chemo (#3) is Tuesday. I will be down for the count next Thursday through Saturday. Hope it's not as bad as the last two crashes but I will handle it.


    The wig I got isn't bad. I wore it for Witches Night Out (but had a witch hat on) and yesterday all day out & about. Stays put & doesn't look too *wiggy*. But honestly scarves are fine. My only issue with them is I have a really small head & need a little POOF to balance it out.


    Now I need to go through to see any posts I missed. Hang in there Women Warriors!

  • alfranco
    alfranco Member Posts: 200
    edited October 2013

    Juli50 thank you and congratulations.

    I am still going regular to bathroom but I do bleed. Dr told me to change to colace, no change yet.sorry

    Nervous about starting taxotere on Monday, anyone already on that?


  • KBeee
    KBeee Member Posts: 5,109
    edited October 2013


    Alfranco- I am on Taxotere and Cytoxan. It differs for everyone, but so far, a burning throat and dirty gym sock taste in my mouth are all I am left with on day 9. The biggest side effects I have on days 3-7 are fatigue and pain...abdominal pain and some muscle cramps and bone pain. Pain is not constant...comes and goes, and is relieved by Ibuprofen. Neuropathy can be a problem, but that seems to come with later treatments as they accumulate. oh, and one ugly black toenail despite icing my fingernails and toenails. The rest are holding so far.


    Vintagegal- awesome about the walk! I am doing one next weekend...Race for the Cure.


    Juli- You all look great! Thanks for posting that. I am looking forward to the day when we are done, recovered and all planning our own trip...hopefully somewhere warm.


    Peacock girl- I have not had hemmerhoids (yet), but did have anal fissures a few years ago after a bout of food poisoning which caused digestive issues for months. The best thing that helped me was rinsing with a squirt bottle or shower head after BMs...basically not touching it at all. It hurt like hell, but finally did heal. It is worth a phone call since it could be a breeding place for infection.


    Knightzoo- For me, the hair thing has gotten easier, probably because my wig is nicer than my previous hair. I hope it gets easier...never gets easy...just easier. I hope you had a good trip.


    Lengbong- how scary!!! I hope you are feeling better.


    I am out of the day 3-7 black hole, and it is like someone turned on a switch. I feel myself other than the throat. I went to my daughter's swim meet yesterday morning, and then worked an ambulance stand by from 4 pm- 11pm. It was so nice to feel normal for a day! Today I slept in and it is a lazy day to catch up on things at home. I am hoping the next 2 weeks bring more normalness before I hit the chemobar again.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    For the dryness, that can lead to anal fissures, I recommend Aquaphor. And, yes, I am speaking from experience.

  • alfranco
    alfranco Member Posts: 200
    edited October 2013

    Thanks Kbee. I feel my breath already stinks.

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2013


    Alfranco, I am on TC, so we've both had the Cytoxan. Maybe that's the bad breat common denominator. You'll have to let me know if Taxotere alone does that. Now I am curious!


    9 days post chemo#2 and I decided to try out my running legs. Slow, but successful. I really want to run the Race for the Cure 5k next weekend. Crossing fingers to stay heLthy this week!

  • Viji
    Viji Member Posts: 195
    edited October 2013


    Juli! Thank you for taking time to post that wonderful news. We all need to hear good news especially now.


    Viji

Categories