Chemo in July 2015

6feetover

Batesburg: Whoa–my onco team told me that the toughest part was over (AC). Interesting. I pretty much sailed through my 4 rounds of AC–if you call the 4-5 days of "brain fog," crippling fatigue, and steroid-induced mini-mania "sailing." So far, it's not been easier on the TC combo, merely different. I wonder why I'm getting 12 Carbos along with the 12 Taxols..? Yikes! I wonder if I should "demand" a transfusion next week, even if my H/H levels haven't changed..? Maybe I'd actually have some energy for once! It seems that the thinking is (in my case, anyway) that I've been anemic for so long that I'd have to get *really* (i.e., dangerously) anemic in order to warrant a transfusion. The thing is, I can't do much of anything without tachycardia, lightheadedness (if I stand up too quickly, I have to grab on to something), and shortness of breath–but that's been the status quo for so long that I guess it's my "normal." This blows.

inkster

MDOC524 - my heart is with you, my friend. Huge hug from the PNW.

Twnkltoz

mdoc, so sorry for your loss.

I am finally bouncing back from the horrible fatigue. I was able to go out to dinner and still feel OK. Hurrah for feeling OK! One more week before the next taxol. I hope I bounce back so much that it doesn't hit me as hard. I've lost more hair... I hope I can have a nice, shiny bald head.

Batesburg

@ adarkadaptedi- not sure of the exact reason for not giving blood transfusions more often. I was insistent since I have been very symptomatic- same as you- light headedness and tachycardia and extreme fatigue just walking from one room to the other. Not a way to keep my spirits up to fight this cancer.

I can say that after the one unit of packed RBCs I have been better but not back to normal.....I'll take it.

Peabrain is on 12 weekly carbo/taxol....maybe they are finding out that better to do weekly carbo for SEs rather than DD that I have been getting...similar to the 6 vs. 12 weeks of taxol??

gargengirl09

Ruth Elizabeth-hang in there! Hope you start feeling better soon! It must be a good feeling to "graduate" to seeing your Oncologist every three months! Baby steps! Hoping your lymphadema therapy is helpful. I go to the lymphadema specialist on Monday.

Mdoc-First, I'm so sorry about losing your beloved Quinny. It's hard to lose a furry family member. Thinking of your kiddos too! I'm sorry you are having trouble with side effects. I also feel like things get stuck in my throat. I've managed to stay healthy!!!

I'm in a bit of a funk. While I try to not let the cancer define me, it's rather difficult. The fatigue, hot flashes and difficulty sleeping are catching up with me. I"m really looking forward to moving beyond this. Oh, and I'm tired of steroids. I feel like I've ballooned! I know that I'm doing well, all things considered, but it is just hard to keep upbeat going on four months of this.

Keep fighting ladies! Hope you all are doing well!

Peabrain

hello, there!

Triple negs, It seems that we are all at our halfway-ish point!

I had my first of 12 Taxol/Carbo treatments on Monday and am waylaid! Can't get off the couch. I have promised myself I will shower today, so those are my big plans.

I would say that AC and TC are both hard, but different and they tell you the one you finished is the hard part to keep your spirits up. The AC was a deep low and then a pretty good bounce back by the end of the 2 weeks. It seems like TC is going to be a constant medium blah. Hard to say which one to choose.

I did not have the pelvic cramping. Does this come on later?

I also do not get neupogen shots unless my counts take more of a dive. My platelets and WBC are still hanging in there.

So glad I have you wonderful people to lean on during this weird adventure! Hugs to everyone.

Thunder7

{{Mary and family}} So sorry about Quinny, it is never easy especially so young. I wish I could take the pain away.

Love,

Thunder7

gargengirl09

Headed to the doctor this afternoon. Found a lump in the other breast. :-(

mdoc524

All - thanks so much for the love and support! I have to tell you I am just so heartbroken - I don't know if it is hitting me a little harder because she died from Cancer and it really just sucks. She was wagging her tail and giving kisses right to the very end and I just sobbed!! And today my house just seems so empty without her - so many little reminders... I know it takes time and the heartache turns to smiling over great memories! UGH -thanks for listening!

To all on the Taxol/Carbo - I wish you well and less se's and not needing transfusions.. I will just be doing weekly Taxol after I get thru this 4th and FINAL round of the dreaded AC tomorrow!! Fingers and toes crossed no neutropenia or hospital this round.. I keep telling myself get thru the next 2 weeks and move on to Taxol - which I know there are other issues with that to deal with but AC hit me hard and I just want to move on..

Gargengirl - hugs to you - don't think the worst although I as I type that I know I would .. thinking of you keep us posted...

All - we will get thru it - I have to say that I consider you all friends and just could not get thru this without you! Being able to just talk to others who are going thru the same thing is amazing... Have a GREAT night!

Mary

gargengirl09

Fortunately, the lump is a cyst. Whew! They were not concerned about it. I can't tell you what a relief it was to hear those words.

Twnkltoz

phew!

Peabrain

@Twinkle - who would have ever thought they'd be so happy about having a cyst!

Twnkltoz

for realz :-)

mdoc524

WooHoo - great to hear gargengirl!!!

Mamiya

Adarkadaptedi/Peabrain, my doctor talked to me about some early studies that show that doing the carbo in a lower dose across the 12 weeks every week with the taxol is much easier on people who are sensitive (which I seem to be). I only have one more carbo left so we are going to just continue on with the dose dense, as far as I know, although he may change his mind depending on what my wbc numbers look like on Monday. I am doing the AC second and I just will get the neulasta shots the day after no matter my counts.

I got a unit of blood yesterday and while I don't feel like a super hero, this is the first morning I have felt human in almost two weeks since my hemoglobin went down to the 8ish range! So, I would tell anyone who has symptoms and low numbers to push the issue. Transfusion isn't without risk, but given how utterly crappy I felt, I was willing to accept that.

mama26

mdoc524- I just got home Wednesday from my 2nd hospitalization from my 4th and final round of AC. I was hospitalized after round 3 also. My MO changed my dose and it still didn't help. I asked about Taxol doing the same thing and she said that there is a risk of counts going down. She says I'm an extreme case and it terrifies me that if I react this bad to AC, will I react to the Taxol the same way? My hemoglobin dropped as well to 8.4 and I have already requested a blood transfusion. I'm so glad to be done with the AC. I hope your last one goes better with no hospitalization.

Gretagirl

Mdoc524 sorry about Quinny!

Ruthelizabeth hang in there !

Gargengril so happy about your cyst! I know it's crazy to be happy over a cyst but we understand!

Mama26 I hope Taxol is easier for you

Hope everyone is managing well! Have a great Friday

mdoc524

Oh mama26 - so many hugs for you! UGH!! how long did you have to stay? I was hospitalized for 4 days for neutropenic with fever after Round #2 (WBC and ANC were ZERO - this all with Neulasta Shot the day after chemo) and they dose reduced 15% for Round 3 and my counts dropped low but not to zero and no fever so I avoided the hospital.... Today I got my final AC (WooHoo) and as the same dose from Round 3 - soooo hoping I avoid the hospital again this time. The reduction in dose did nothing to help my side effects - I still went down for the count by Day 7 - in bed for 3 days - horrible diarrhea, headache, sorethroat, shakiness etc ... so to be honest I really feel any difference with the dose reduction but my counts were a little better although they said I was still considered Neutropenic just not severe as previous round..

I also asked about Taxol and impact on white counts and since mine go so low - I was told that Taxol completely different and the drop in counts during AC are not an indication for Taxol and we will have to wait and see... UGH .. I am not a fan of the waiting game..

I hope at least you are feeling a little better - it took me a full week to feel any better from my hospital stay - funny the day after I got home I could not get out of bed and I expected because I was home to feel better.. hope this is not the case for you!

Mary

mdoc524

Just sharing my Final AC Pic - so glad to be done with the Red Devil!!

RuthElizabeth

hi everyone.

Congrats MARY, for your last AC. I hope it goes smooth. My prayers have been with you and your family thru this all. Especially after loosing Quinny. I know, I had to put my diamond down cause she had cancer too, the same day I found out I had cancer. That whole weekend was a fog. And here, four months later, I still hear her and look for her. So many tears of how she loved me unconditionally. Hang in there.

Those dealing with diahrea. I was to the butt specialist this week. Learned the worse thing we can do for a sore butt, is use Vaseline. It's a super no no. Anything but.... He also said instead of wiping with toilet paper, use sensitive baby wipes. I also used t paper with witch hazel poured on it. Hope this helps

Gargengirl, so glad your lump was just a cyst. Whoo Hoo. What a relief. Keep your head up...

Triple negatives, I have been reading a little too much. I also must admit I feel guilty for finishing my AC, and not having to do more chemo. You all seem to be doing other rounds. I did ask my onc dr, and he said since it was stage 1, I didn't need to do more. I hope he is correct. October 5, there is a breast Cancer thing I'm going to. Someone is talking about the triple negative. I intend to take notes and will share what I find out. I hope some good new research....

It's 2 1/2 weeks since my last AC. I finally feel a little human. Actually ate a sandwich yesterday for the first time, and I think it gave me a little energy. After 12 days of diahrea, it felt good to eat. And I tasted a bit of it. My taste buds are slowly coming back. But I still get nauseated from food smells. That should change too, I hope.

Peace and love to all my friends, which you have all become. I couldn't have done it without you all, either. Bless us all. Ruth

mama26

moc524- I was hospitalized both times for 2 days. Neutropenic with fever. ZERO for me the first time. Not so low the second. I also had to go in yesterday for 2 units of RBC's and Potassium as my hemoglobin dropped as well. My heart was fluttering upon standing and it scared me so bad. Hence the potassium infusion. I feel better today. My MO is giving me an extra week off before starting Taxol so I won't have my first one until September 28th. I'm told most of the worst side effects are for those on DD not the low dose weekly so I hope that is truly the case. I also got the Neulasta shot the day after chemo each time. It did not work for me. I went in both times on day 6 after chemo. I guess that's my "magic" number. I'm so glad you got your last AC over with. Let me know how you do. I so hope you avoid the hospital this time! I will pray for you. My MO said I am an extreme case. Though she sees the low counts, most do not stay at ZERO for 3 days! Sounds like you are just like me in that regard. Take good care of yourself. I will check back to see how you are doing.

RuthElizabeth

hi everyone. Had a great, feel good day yesterday, and sick as a dog again today. Diahrea again. Super sore butt, and guts are killing me. Doing nothing but crying. It will soon be three weeks after last chemo. I must start feeling better soon. Eye vision is really bad. Having trouble focusing. I would like to go to the eye doctors, but felt it was better to wait a bit more yet. Sorry for complaining. Just curious how everyone else is feeling? Here's to a better tomorrow.... Rut

mdoc524

hey Mama26 - sounds like we are identical with the Neutropenic crap - I so hope we fare better with good counts during Taxol! Had my last AC Friday - hit me right away like getting hit by a truck fatigue wise! Yesterday on the steroid kick - today just so tired - did not sleep at all last night! My crash usually starts around Day 6 with extreme fatigue, bad shakiness/unsteady and the dreaded runs - which last I managed a smidgen better! So at least I know what is coming and as long as no fever & no hospital I can get thru it! 👍 My 1st Taxol is on 10/2 - let me know how your 1st one goes & how you feel the few days after - I have something going on my 1st weekend that I don't want to miss ..

Oh Ruth my heart breaks for you - few questions - previously you had stated you were still taking Senna & eating fruit while experiencing diarrhea - I might suggest holding off of those 2 things to give your bowels a break & maybe add in an Imodium or two! I am no Doctor so take my advice or leave but I have a bad gut thru all if this and my 1st 2 treatments I took stool softeners and I had horrible runs with bad cramping! My 3rd round I decided to not take any constipation meds & just really made sure I drank 70-80 ounces water each day and ate Raisan Bran & other foods to help me go! By Day 6-7 post AC the diarrhea hit but without the cramping and once I felt cleaned out from the constipation I would use immodium to calm down the runs - maybe 2 or 3 at most per day until stomach better. For sore butt- I use Cottonelle moist wipes - always have- they come In a little case and at Target where TP is sold. I also use Tucks medicated pads and Preparation H ointment several times per day. Sharing in case you might find anything I do helpful. Hugs for you - hope you feel better soon. 😘

Happy SE free Sunday All! GO EAGLES!!

Mary

Twnkltoz

hang in there, ladies! Hoping this round good OK for you with no hospital time.

I'm doing OK on the taxol, but I developed a rash on the back of my hands, which I guess is common. So far, benadryl and gold bond lotion with aloe are keeping it under control. I'm pretty tired most of the time.

mdoc524

Hey Twnkltoz- thanks for the well-wishes & thanks for sharing how you are doing with Taxol! Can you share how the SE's are for the few days following? I hear you say tired - anything else? Stomach issues? Did you have any immediate reaction on 1st time? I have my 1st Taxol on Friday 10/2 & have plans that weekend I would like to make!

Thanks

Mary

Cheesequake

Hey ya'll, had TCH #4 on Friday. Can definitely tell it's subtly, gradually fatiguing me more each time. Took longer to bounce back after #3 (and had somewhat more severe side effects - stomach cramps one day, blacking out from dehydration another - I canNOT seem to keep well enough hydrated and the MO says there's no point in adding fluids to the infusion day, she says I'll just pee it all out an hour later.)

I'm feeling weak and shaky right off the bat this time, on the previous three rounds it took a couple days to feel weak. I still pushed myself to do a half mile hike and play some Frisbee yesterday, and this morning we walked across the street to the park and sat under a tree... that's about all I have the energy for today.

Stomach is being weird, but that's to be expected. Trying to keep on top of the meds to keep it under control. Night sweats that started during the last round, but cannabis extract lets me sleep through them - which is awesome and necessary. I can't imagine trying to do all this without getting any sleep on top of everything else!!

Frustratingly, so many friends want to visit, help, get together... My street has been torn up by construction for months, traffic is awful, there is no parking, it's a hassle just living here with all the construction, let alone visiting. I'm definitely feeling too weak to safely drive, so I can't go see my friends, and I feel bad about them having to put up with my neighborhood... easier to just play on the internet.

Twnkltoz

@mdoc, I'm happy to share. I posted a long post on my blog, but I'll give the highlights. the first two days were cake. No nausea or stomach problems. Day three I started feeling fatigue, and I think the bone pain started day 4. It only lasted a couple days. I found the pain to be more annoying than debilitating, but I was very fatigued. Getting up to brush my teeth got my heart pounding. I felt like my legs could barely support me. I was constipated for 3 or 4 days and had some little pains in my gut-i think related as they went away once I was able to move my bowels. I cried a couple times... I just got so tired of being weak and needing help.

I started feeling better day 6 I think, and now it's just the fatigue. I can go out to eat, but I'm exhausted before we get home. I can putter around OK, but if I do too much at once or climb the stairs, I'm sweating and panting. And now the rash, but it's not too bad.

Peabrain

Hello!

@Mary - I just went through my first Taxol/Carbo and if you are anything like me, you will be ok doing something on the weekend. Treatment was Monday and then I was ridiculously fatigued (could Not get off the couch for love nor money) until Thursday. I have been tired this weekend (just woke from an unplanned two hour nap), but more or less my good chemo self. I spent time with a friend yesterday and ran errands today and was happy to be alive.

I was super nauseous on the AC but did not have to take any antinausea for the Taxol. The only meds I took were Nexium (I now take that every morning, prescription strength) and the usual combo of stool softeners and natural laxatives to keep everything moving.

My tastebuds have sorta recovered by the weekend.

I have an odd patch on my skin by my wrist, looks sort of like poison oak, that I suspect is a reaction to the Taxol, but I will show my MO tomorrow.

@RuthE - when my MO thought I was stage one, he planned to give me 4 AC, then 8 TC. When it turned out I was stage 2, he added an additional 4 TC. I would ask your team again about the TC, and maybe get a second opinion. It just seems like most of us triple negs are getting some T after the AC and we wouldn't want you to be jealous.

Is Preparation H the same as Vaseline?

RuthElizabeth

hi everyone. Pea rain, I go to doctors in two weeks, and will ask again about T. No, Vaseline is not the same as prep H. Use the prep h products. I was using the Vaseline every time I wiped, and even though I am still having problems with bowels, absolutely no Vaseline.

Hope everyone had a good weekend. I start my lymphedema therapy today. My grandkids came to visit yesterday. Abby drew a pic of me with no hair, just a few stumbles on top. I think I may have to frame it. It made me smile....

I'm going to try to work a little before therapy, so guess I have to try to eat. I still don't have any appetite. I kinda think my body is going thru some chemo withdrawal. I seem to have all the se I had when getting it. The vision problems are awful.... Sometimes scarey.

Peace and love to you all. Ruth

mdoc524

Twnkltoz - thanks for the info - quick ?? - are you getting weekly Taxol infusions or every few weeks ?? Mine are weekly and on Friday's ..

PeaBrain - thanks also for sharing - so you get TC on Monday's and down for a few days - good to know .. just trying to plan which is just so hard

Ruth - hang in there - my heart breaks for you now that you are weeks out from your last AC - I would be frustrated too .. your body needs time to recover!

Cheesequake - that stinks about your Street and Construction .. I have been neutropenic for weeks that I am in no visitors / no outings for weeks so I can relate - all internet for me! I hope that my counts come up on Taxol and I can get out ..

This last AC for me - I can definitely feel it more - just want to go to bed and trying to work today and a few days til I know the crash will happen on Thursday .. I don't have much FMLA time left - makes me nervous with work .. I used 6 weeks for my BMX and then now have Intermittent FML to use days when needed and don't think I will have enough to get me all the way thru it .. UGH

Take care all

Mary