Chemo in July 2015

Twnkltoz

i am on a dose dense schedule-every two weeks. I don't know what the dose is, but I assume pretty heavy.

Has anyone else noticed general shakiness? For me it started with chemo, I think. My hands shake a little, I fumble things and am generally clumsier. I hear a little shake in my voice sometimes, too. No neuropathy yet, though.

mdoc524

twnkltoz - yes been shaky/unsteady since starting chemo - somedays way worse than others

Peabrain

Twinkle - I am generally athletic. On chemo I am a mega klutz and am unsteady enough some days that I make sure my DH is home when I shower, just in case I go down. It hasn't happened but it feels like it could. I hold the railings on stairs and place my feet deliberately. I carry things with two hands. I have more empathy for older people and the permanently disabled.

My mind is also affected. I set things down, turn around and forget where I put it. I play online word games and my rating has steadily declined. My attention span has dwindled. I cannot read a novel or anything longer than a medium magazine article. Some days my vision is quite blurred. I carefully choose the days when I drive and leave the radio off to minimize distractions.

I will be 48 in two weeks, but I think I've been time warped to 72. Know what I mean?

I have no idea how any of you all are working at all during this! My sincere appreciation of anyone who is still functioning with work, kids, household chores, exercise. I am greatly impressed by your abilities to push through this.

Hugs to everyone.

Twnkltoz

ugh... Tonight I broke out in hives, so add that to my symptoms.

@peabrain, I'm a professional dancer, so I feel you! Definitely lose my train of thought often, but I'm still able to work a bit. Thankfully I do it from home.

Mamiya

@mdoc, just to weigh in on the taxol question (and in support of the idea that "everyone is different") I get weekly taxol over 12 weeks, with every third week also getting carbo (I have had 5 taxol only and 3 taxol/carbos so far). The taxol weeks are sooooo easy, almost like getting nothing at all. I don't take any meds, I do whatever I do, and really I feel fine. The carbo weeks are harder, much harder, but I would not fear taxol (I hope that your experience will be a good one like mine that is).

Jbandkb1

Notdoneyet I start DD 4 rounds of just taxol today every 2 weeks. Hoping I respond like you have.

Gretagirl

Twnkitzo I get real shaky and forgetful too. I do Taxotere Carboplatin and Hereceptin every third week

Thunder7

Last chemo tomorrow!!!! Now getting nervous about reconstruction. Hope everyone is doing well.

Love,

Thunder7

mdoc524

Notdoneyet - thanks so much - so hoping Taxol for me is easier at least on the stomach! Hope yours stays easy even with the Carbo

Peabrain - I honestly some days don't know how I get thru work like today & other days are better! I am able to work from home - would not be able to do it otherwise!

Thunder - how exciting for you! Thinking of you for last day of chemo!!!

I am just trying to get thru this AC last round from Friday! So wiped out & shaky - waiting on the dreaded runs which should hit tomorrow into Thursday if history repeats! Fingers crossed no neutropenic with fever/hospital trip this time!!

Have a great night all

Mary

Twnkltoz

happy for you, @thunder7! Good luck!

I'm supposed to have #6 tomorrow, but if these hives haven't subsided significantly I think I'll ask to delay it. I'm miserable.

Sharazhad707

@ Mdoc, yay for the last round of Red Devil! I just had mine on Tuesday... glad to see the last of that bugger. FYI I thought Red Devil was a south african term for it :P Had no idea it was global

In othernews, the lumpy growth thing that I found under my arm turned out to be quite benign and nothing to worry about, so good news there.

Current sides effects experiencing at the moment:
- nausea
- skin sensitivity
-burning sensation under the skin
-Not all the hair has fallen off my eyebrows and head, so I just fill in the patchy bits on my eyebrow with a pencil and concealer.

I'm just curious about masectomy options that you've all been told.My doctor informed me that because I have two lumps on one quadrant they wont have to do a full masectomy, they can remove one quadrant however I have to do 5 weeks of radium. What are your experiences of rad? I'm worried about reoccurunce; and I'm a bit confused which option to take. What sorts of questions should I be asking my doctor when I see her again?

Kind Regards,
xx

S

6feetover

As I just posted in Calling All TNs, my geneticist called me yesterday during my infusion (Round 4) to let me know that the extensive genetic testing came back negative, as she'd assumed it would. No BRCA (which I'd already been tested for several times, including the BART large rearrangement) and no Li-Fraumeni (which I was *convinced* was the culprit, based on my extended family's history of a variety of cancers, including breast and bone).

I'm actually more freaked out, now, instead of being relieved. Right now, I'm still an "uninformed negative," because I don't know if any members of my extended family ever had any genetic testing done. My geneticist told me that if my mom's BRCA "variant of unknown significance" (which I didn't inherit) is eventually classified as a true mutation, then I'd be considered a true negative. To me, that's not a blessing, it just makes it all worse. I guess my cancer's a fluke, then...an ugly cosmic joke. Fabulous.

Twnkltoz

@adarkadaptedi, I'm a fluke, too. No breast cancer in the family I know of, BRCA negative. And I'm triple negative despite not falling into the ethnicity for it. *shrug*

Saw my doc and did labs this morning. Still have a fever, store throat, lots of hives, and I feel awful. Stop chemo #6 is delayed until next week. It's a bummer, but I guess it gives my counts a chance to bounce back. Although my wbc and neutrophils were high.... Probably because I'm sick?

RuthElizabeth

hi, I'm TN too. Negative BRCA. My mom was the first to get breast cancer. She had IDCS in situ. Had mastectomy and no chemo. She was in her 70's, so thay kwouldn't do genetic testing. My daughter also did genetic testing and was negative. So, not sure what it all means either.

Had my third day of therapy. It's going well. Some swelling has gone down. Might be able to go to sleeve much sooner. Yea.

Hope all are well. Ruth

Sharazhad707

I'm a TN fluke too! No history of BC in my family ever!! I'm the first... You're right darkadapted.. it feels like one big cosmic joke. Like : eeeny...meeny... miny...moe! Oh you're the lucky bastard to get TN!
One of the biggest things I can't seem to wrap my head around is what caused this; because my lifestyle was no different to my friends. It feels like was I genetically engineered to recieve this cosmic gift.

Peabrain

Freaking out here.

Had my second of 12 Taxol/Carboplatin treatments and my fingers and feet are starting to tingle. I SO do not want permanent neuropathy. Is this normal to have tingling so soon? Is there anything I can do to avoid it getting worse?

RuthElizabeth

peaBrain, I went to a natural store and bought Quantum Derma Herbal Skin Crack cream. She said her mom was getting the tingling from chemo and this helped. Not sure if it will help, but check it out

mdoc524

Hi All - still in the thick of se's from my final AC last Friday! From extreme fatigue/unsteadiness to this time severe constipation which I usually get opposite - so bad that it hurts so much just to sit down! I have cried & actually almost puked over how painful my butt hurts & think how does this heal.. - sorry if TMI! Soooo glad I am done with AC .. Any butt tips again please share!

Peabrain - I actually have mild finger tip neuropathy from a bad neck injury/accident 5 years ago (you would not believe the story) & asked my MO if there are things I can take to help to get ready for Taxol! She said to take daily dose of B-Complex! I also read & think someone here may have mentioned that taking L-Glutamine may help as well & asked MO - she was fine with taking that also & said the powder was recommended! I have both but did not start taking them yet - waiting til my AC stomach issues settle down!

Twnkltoz - feel better soon - sorry you got delayed!

Erika - so agree with the frustration of the genetic crap - when I was 1st diagnosed - I wanted all answers & wanted to know why! I have very strong maternal history & still tested negative for BRCA & full genetic panel! The genetic counselor actually said for my family there is probably a gene not isolated yet! Wow well that did not help especially for my kids & my 14 nieces & nephews! For my family = Maternal Grandmother -Breast; Maternal Aunt -Ovarian (died age 37); My Mom - Colon.... And now add me to the list - I am the only other female on maternal side besides the kids... Still want answers but don't think we will get them - SUCKS!

Sharazhad707 - great news about your benign lump! As far as Mastectomy vs Lumpctomy - search the articles here - there are a few good comparison ones that give questions to ask for both! There is also a lumpectomy forum you may want to look at too! For me my Surgeon told me she can get it all with lumpectomy & Rads! I made the decision on double mastectomy myself due to my age - small kids - family history & wanting to throw everything at this & not look back! There are many women who have lumpectomy & are fine - for me I felt more comfortable with BMX! Your surgeon should go over both with you - he/she may make a recommendation but ultimately the decision is yours! I had mine done with Tissue Expander placement at same time so that when treatments are done I will be ready to finish reconstruction! PM me if you want more details & check out the forum "April May Surgery Sisters"

Ruth - glad therapy going well ... How are you feeling? Better from your last AC ?

Have a good weekend all! ❌⭕️❤️👍

Mary

gargengirl09

Peabrain-Sorry you are having numbness and tingling in your fingers. I talked to my doctor about Neuropathy when I started Taxol, and mentioned to her that I did acupuncture for chemo side effects. She said there was a study done recently and that acupuncture was just as effective as Gabapentin. I highly recommend acupuncture. I haven't had any neuropathy and it has really helped with my hot flashes.

I saw an article from the American Cancer Society about getting a flu shot when you are undergoing chemo, they recommend it! My MO said no to a flu shot until I was done in November. Has anyone else had their doctor tell them to wait until done with chemo? Thanks in advance.

Hope everyone has a great weekend!

gargengirl09

mdoc-have you tried Desitin? I've heard that it works really well on chemo bottoms. I used it on our daughter when she was a baby. Hope you are feeling better soon.

mama26

Mdoc524

Sorry I haven't been on here to check how your last AC went. I am in the hospital AGAIN. They are investigating a fever of unknown origin. I had to get a blood transfusion and potassium infusion and within a few days started running a fever. I'm getting scanned tomorrow. I'm so glad you are finished with the horrible AC. It looks like you will experience Taxol before me as mine has been postponed due to my health. The only thing that even came close to stimulating a bowel movement for me were plain old glycerin suppositories. Hope you are almost over the hump. Take care and let me know how Taxol goes.

RuthElizabeth

hi everyone. Hope you are all having a good weekend.

Mary, I'm still struggling with my belly. Pain, nausea. I feel sick whether I eat or not. Bowels are still not right. I started a pro-biotic pill my daughter got me. Only a few days now, but not sure yet if they are helping. I go for my first doctors appointment Monday. Curious what he will have to say.

I did a full week of lymphedema therapy. They measured me for a sleeve. It should get turned in Monday and ordered. Till then, I have to keep wrapping my arm. What a pain. It's so uncomfortable. But, I have to do it, I guess.

Keep the faith! Ruth

Twnkltoz

@mama26 sorry you're having such a hard time! I hope you get past this soon.

I had a rough week, but I'm finally better. Hives and fever are gone, and it never got quite high enough to put me in the hospital. Now hopefully I can have a few good days before taxol #3 on Wednesday.

Suzanne1971

hi all, I disappeared for a bit (because I've been feeling GOOD), and just now am catching up with the board.

First, Mary, my heart aches for you and your family. I am so sorry for the loss of Quinny. My Olivia (11) has just been the best thing for me, and I can't imagine the pain of losing her during all of this. Xoxo to you.

I am bRCA negative, and adopted. I don't know my genetic history, and you can be certain I will be doing some digging pretty soon. As soon as I knew I needed a biopsy I knew it was time to learn more about my biological history. If I do learn that there was a strong presence of cancer, I know I will feel an bit resentful that I didn't do this sooner (or that nobody tried to notify me). So, lots to deal with there.

As for dealing with things here and now- got my first yeast infection, so that's something. And eyelashes and eyebrows are making their exit. I don't miss shaving or the hair on my head, but will miss my eyelashes and eyebrows.

Round 5 is Wednsday (6 total), so I can really see the light at the end of the chemo tunnel. Side effects have truly been manageable, and I am so grateful. Fatigue is definitely there, and I just try to nap when I can.

My chemo is neoaduvant, so I still have quite a road ahead of me- bilateral with reconstruction in December. I'm not a candidate for nipple sparing, so that is unfortunate. Then rads to follow. But I will be happy when I can check off the chemo box from my list. I feel like this is the worst of the three.

SVGsurvive

Hi ladies. I'm also guilty of being a silent watcher of this particular board topic, but wanted to jump in & say thank you for being so open & helpful. I'd feel very isolated when SEs are at their worst if not for boards like this.

My 1st chemo was 7/29. I've since completed my 4 rounds of dose dense AC, and my 1st of 12 weekly Taxols last Weds. I recently got news that I'm positive for the PALB2 gene mutation resulting in a definitive BMX in January.

My biggest saviors during crappy times are daily exercise, music, and myself! We all have it in us - and we're proving it now. I'm proud of me & I'm proud of all of you!

madrew

Hello ladies! I finished my last chemo almost two weeks ago. Physically, I feel pretty good overall, just the usual aches and tiredness. It's not fun, but I feel like I'm able to deal with it better than in the beginning. Mentally, I am having a hard time calling it my "last" chemo and being as excited as those around me are. While I know it makes no sense, I just don't want to "jinx" myself. I am triple negative which is part of my nervousness about a possible eventual return of cancer, but I know I'd feel this way no matter what my stats were. I also have some family history (breast, ovarian) and have come up negative on the many genetic tests that have been done on me. Go figure. I still have a thin "chemohawk" but have lost a few eyelashes and eyebrow hairs. I am praying they don't all leave me.

I will now move on to some radiation treatments. Of course, I'm not excited about this but am hopeful it will be a little bit easier to handle than chemo was.

Wishing you all the best.

Twnkltoz

@suzanne1971, it it makes you feel any better, even when they spare the nipples there is no sensation. And I've heard the ones they make during reconstruction look great.

RuthElizabeth

hi all. Is anyone waiting for reconstruction? I figured I would wait the three years, hoping to stay clear of more cancer, due to the triple negative. I'm just not ready for more surgery and time off work. I haven't even had an appointment with a plastic surgeon yet, either. Maybe I should at least talk to them. I don't know

Tomorrow is my first follow up appointment with the doc. I'm anxious to hear what he has to say.

Night all, hope you get a good nights sleep. I know I'm surely due.... Ruth.

Twnkltoz

I'll get tissue extenders in during my mx, and I'll probably have reconstruction next summer after I've recovered from radiation.

27heart

Hi all, I thought I would make my first post in this thread. I'm not sure when I've started my chemo, but it does seem like it was some time in July. I've completed 4 AC (man, that was a bad time). I'm having my 4th infusion of taxol tomorrow.

I'm struggling with my spirit but I'm trying to move on and look forward to each day. I'm scheduled for mx in Dec after I'm done with all 12 rounds of taxol. Praying hard that the chemo will get all, if not most of the cancer (I'm stage III advanced). I suppose I'll have to go though a month of radiation next year after my mx. Not looking forward, but time still moves on.

I get SO dizzy on benadryl! It's good though, I sleep through the rest of chemo. No waiting time there.

Hope to get to know some of you here. Cheers!