Anyone.Starting Chemo in October 2016?

b2alicia · November 2016

YAYY BARB!! What a star you are! Injecting your own self! WOO HOO!! And I'm guessing that it might get easier the next time.

So the nurse I saw this morning, Carol, was a VERY sharp cookie. She was the one who did my evaluation for the acupuncture program. I will be seeing her again next week, and I plan to ask her to repeat the stuff that went over my head today ! She explained some things about my horrible diarrhea last time, but I didn't quite get it, so I can't wait to try to understand it again. I'm so glad she's there!

Also, my sweet poodle friend finished knitting my hat, and brought it over to me.

She also said she would bring some Thanksgiving dinner over to me on Friday. Yippee!

Luwusu · November 2016

Barb- well isn't that great that you have successfully injected yourself!!!!!! Way to go! That is such good news. Wooo hooo

Nancie

Abracadabra · November 2016

Betty - You look so happy, and your post is so full of positive energy!

I'm so glad that you have found another good person to be part of your network ... this nurse sounds great! And your cozy hat looks like just the thing for snowy weather ... we got dumped on in Montreal too, and my little cotton scarves just aren't cutting it outside anymore. The cold wind she blows!

Take care, Barb

Abracadabra · November 2016

Thanks, Nancie. It felt like such a huge deal 24 hours ago, and now I feel such relief! Hugs!!

Barb

VLH · November 2016

Yay, Barb! A nurse called from the ER the next day. I wish I had thought to mention the lack of compliance with my request on not using my left arm.

Miles, bummer on the cold . This stuff is bad enough without adding cold cooties to the mix.

Nfullblume, you look gorgeous! Regarding the Neulasta pod, I've had no problems at all with it on my abdomen. Mine, too, is above the waistband so there's no jostling there. Luckily, I've only had mild headaches, but no idea if the placement of the pod is a factor. I have a herniated disc and have been hurting, but the pain coincides with having to give up ibuprofen although I can't rule out Neulasta as worsening things.

Kate, I would pursue the surgeries in your position as well. It's obviously a major decision, but could certainly provide some peace of mind. I hope no infection develops. Fevers can be scary when we know our immune systems are so compromised.

Alla, how great that you were able to work throughout your AC treatment. My friend has been doing so as well, but is concerned as she moves into the weekly Taxol phase.

Mel, sorry, I'm not familiar with fed-d so can't offer any input.

Lyn

Nfullblume · November 2016

Barb, I cackled out loud on the realization that your head could skinny dip! Awesome!

Thank you guys for the compliments. You made my day. My poor scraggly hair isn't look so hot today, but I went out with a few friends tonight and had a good time. I still think it's funny when I see folks out and they don't recognize me with no hair. All of my friends are so supportive though. I'm very blessed.

I'm definitely going to query my MO on the Neulasta placement. If I could avoid the blunt force trauma to the head, I'll try! Lol

Alla, I did surgery prior to chemo. My tumor was very small, 9mm, but my BS gave me the option of mastectomy with reconstruction or lumpectomy. I think you will have the option as well. Your insurance company may need to be persuaded if the double mastectomy is elective though. I was willing to get rid of all my girlie parts if my BRCA testing came back positive. I was lucky and opted for the lumpectomy instead. I'm very pleased with how much the girls still match! If your tumor really shrinks, it could be a super small lumpectomy.

I hope you all have a fantastic Thanksgiving!!

Connie1230 · November 2016

Abracadabra, do you take notes or what? I have trouble remembering to names to reply to one or two posts much less several?

B2 Alicia, love the hat! Now I love everything about living in FL after living in snow country all my life but the occasional well fitting stocking cap would be a great thing to wear. Unfortunately I would melt here in our temps 90% of the time. I have found that I can't even wear the chemo caps because I can't stand them being tight over my ears. I am limited to a wig (which is hot now at times so summer will be a nightmare) or scarves that are pretied (most comfortable). I do not have patience for those pretty scarf techniques I see. I know that without even trying.

Luwusu, thanks for telling me the taxol side effects. I think I do better when I know what to expect...or dread...without being caught by surprise. I am choosing to believe this will go well and I'll breeze through at least until Thanksgiving is over. Then I will allow reality to reappear. I have 2 sons coming without their families for Thanksgiving. Their families are going to the other side of the family. Since both have children, everyone is afraid of me catching a bug. Since both of these particular dils have lost their mothers (one to breast cancer and the other to Alzheimer's) in the last 5 years, they are very supportivel of my sons coming here. As they live in Ohio and MO, I haven't seen them since this lovely journey started.

Alla, I start the taxol and carboplatin Dec. 5 so just a few days after you. I will be anxious to hear how it goes. When I allow myself to dwell on it, I just about go into panic mode because AC seems to have gone easier on me than most and I know you've had your fair share of problems. I do not think it's realistic to think my luck will continue. I know no one ever reacts the same and while I'd love to think I'll do well, how much can I expect after doing well on AC!

Mood swings....I could write a book. The oncologist prescribed the lowest dosage of a zanax generic. It didn't even begin to touch it. Yesterday, probably because I burst into tears in her office, she prescribed the next lowest dosage which is twice as much. I took the first one tonight because I wanted to make sure I wasn't like a zombie when our sons are here. No zombie, no major mood swings so maybe this will help. Since I don't work, it isn't a huge issue but I really don't want my sons to see me like this so I hope it works. The only side effect they're really aware of is exhaustion. My husband really laid that on the line to thembecause he didn't want them to be thinking Mom would cook, pick up the miscellaneous junk they seem to leave all over etc. I have somewhat turned into a neat freak, not because I truly am one but because I'm afraid if the mess accumulates, I won't have it in me to get it all picked up and I can't bear the thought of it being a mess til this is over.

Abracadabra · November 2016

Hey Connie - You caught me! When I'm doing a 'catch-up' post and want to touch base with a bunch of people, I open a word document and type everything up there as I scroll through previous posts. When I'm done, I copy/paste it into position and Ta-Da!! (Otherwise, I try to go back and forth and often manage to lose my post in the process! Live and learn. I mostly live by lists these days, anyway, or I'd never get anything done.)

I think that doing well on AC is definitely a positive sign for how the Taxol will go. I am crossing my fingers for you, and following in your footsteps (I still have one more AC to go before my Taxol starts).

Since I've always been the main housekeeper, I find that the mess builds up quickly if I don't stay on it. But I've realized that my men (son and hubbie) are quite willing to pitch in if I tell them I need their help and give them specific instructions/tasks. (Note: they may not do it the same you would do it, but that's OK!!!) I've never been a neat-freak, but this helps to keep it sane and reasonable.

Also, its great that your doc gave you something for mood ... I've been on antidepressants for a number of years, and know that they have made a world of difference to me. I find that they help me to feel clear-headed and balanced and positive, without the distraction of depression or mood swings. I hope that they do the same for you.

All the best, Barb

deemendoza · November 2016

Good Morning BEAUTIFUL girls,

I've been a tad MIA since my last infusion thankfully I've had very little SE this time around compared to round #2. I think going back on the steroids was the key, I know they cause jitteriness and rapid heart beats etc. but I truly feel like it's helped out with the SE of nausea and the SE post neulesta.

Everyone looks great and I LOVE everyone's spirit. I just wanted to wish YOU ALL a Happy Thanksgiving, I know that in the midst of our journey we find it hard to see our blessings but I'm blessed and thankful to be here and to have met (cyberly) each and everyone of you. You've all made this journey so much easier. So enjoy the holiday with your love ones and as I say grace tomorrow you, your families and your health will definitely be part of it.

OASN: My oncologist is the head ONC for the entire region group in my area and she personally called me yesterday to check up on me since round # 2 had been so rough she wanted to see how round# 3 was, talk about bed-side manners.

1 more round of A/C to go and then off to 4 rounds of taxol (another small victory to be thankful for)

Dee

Abracadabra · November 2016

Good morning to you, Dee!

Thanks for your Dee-lightfully positive morning message. I'm glad you're doing better, and looking forward with optimism. I echo your message of gratitude for the support of all of my sisters on this forum ... what a difference it makes. Happy Thanksgiving!

Barb

b2alicia · November 2016

Okay, REALLY whining now, but this is the only place where I feel safe doing it.

I'm by myself tomorrow. On Thanksgiving. *sob!* Tomorrow will be day #7 after Infusion 2. The diarrhea has started up again. Thankfully , NO mouth problems this time. I was invited to go up to my friend's in Nederland for dinner tomorrow, but it's a long, winding drive through the mountains. And I just can't do it. Today I had to go to my pharmacy at Safeway, and I could barely make it. The sweet pharmacist asked me about my plans for tomorrow, and soon I just had tears rolling down my face. And even if I DID go somewhere to eat, what can I have that will be okay on my stomach? Poor poor me!

Okay. That's enough.

Luwusu · November 2016

B2Alcia,

Oh, you don't know how much I wish you lived close to me. We would come and pick you up and bring you home afterwards. The best I can do is tell you that thing will get better and you'll get through tomorrow. I wish your friend could arrange transportation for you! What about Uber? Know that you aren't the only one who will be alone tomorrow. You are one of many.

Maybe make a list of things you'd like to accomplish tomorrow, like begin a new book, watch the parade or dog show on tv, make a list of all the positives you have in your life, get out some holiday decorations, begin to listen to Christmas music, begin knitting, crocheting or sewing something if you do those things, make a batch of your fav Christmas cookies, write out some holiday cards and get them ready to mail, do some journaling, go for a short walk even if it's very short.

Again, I am sorry and wish you lived in New England! Our group tomorrow is small, only 5, but we would welcome you in heartbeat.

💚 Nancie

Luwusu · November 2016

I edited the abovepost 4times trying to fix a typo- unsuccessfully- but you'll get the idea

Abracadabra · November 2016

Betty - Oh honey, I wish I could teleport there to be with you! It sucks that your Thanksgiving has gone off-track this year, but there will many many many more to celebrate down the road when you're feeling better!

Try to focus on all of the good you have in your life ... you put out such positive energy, I know it must flow back to you through your friends and the people you help in your work, not to mention the ever adorable Percy and Dillon! I know I'm thankful to you for the support you've given me along the way.

Be kind to yourself tomorrow, take a bubble bath, watch Netflix, eat whatever appeals to you, and know that we're all with you in spirit!

Big hugs, Barb

Whistlestop · November 2016

Sending you a virtual hug b2alicia. Agree with the suggestions - pamper yourself in whatever way gives you the most relaxed pleasure.

Or a polar opposite note, maybe release more of the stuff that's brining you down....Here's Something I call .... "break a plate" . Literally take a plate, this works great with garage sale cheapies, and break it. Out on the driveway works. Throw it, release the frustration and sadness. .... Sweep it away when you clean it up. Sometimes you just need to release it and let it go.

Your fellow sisters are here sending you loving energy to replenish you.

Terry ( aka Whistlestop. )

Miles · November 2016

Melinda, Nancie, Barb, Lyn and all of you who have wished me well; I thank you. I am feeling better.

Betty: I am so sad that you are feeling lonely. I am praying for your comfort. Being alone can be difficult. I find that listening to or watching comedy helps me.

Terry: I love the idea of braking a plate. I might just try that one.

Welcome to all of the newbie's.

(((gentle hugs)))

Luwusu · November 2016

HappyThanksgiving to all,

I had chemo #6 yesterday. Just Taxol this week. It went well with no problems. I talked with an NP re red (inflamed at times) areas of skin and rashes on various parts of my body. Two cortisone type creams were prescribed, but she said it was par for the course with Taxol. As far as the foliculitis is concerned, she feels that will soon go away on its own and wasn't concerned. I also fell last week while running around on my wood floors playing charades and bruised up my arm. So I'm not looking my best right now with the bruising, the rashes and the foliculitis . . . . .

I bought three new hats while at Dana Farber yesterday. I am finding that I don't wear my wig often- just sometimes when I go out. But I like my caps and hats to match what I'm wearing (says the bruised, red rashly girl) so I'm building my. collection.

Whistlestop, I know you are just days behind me on the exact treatment I'm having so I wanted you to know my chemo #6 was good yesterday. I am still getting a reduced amount of steroids to manage the high/low emotional trainI was on with a higher dose, and I'm still on a full amount of Benadryl as pretreatment on Wednesdays due to a slight reaction I had during chemo week #2. You've got this.

As soon as I figure out how to do it I'm going to post a few pictures. I am now 6/12 weeks done with my first group of chemo- halfway done with that. "I get by with a little help from my friends" and a lot of help from my sweet, good family.

I see many of you are able to type someone's screen name (to address them in a post) where it shows up blue and is easier to spot. Can anyone tell me how to do that?

I hope everyone is feeling well enough to enjoy today, Thanksginving. Whether you're spending it with everyone you wish to be with or spending the day in a quieter way, I hope it is a day of reflection and thankfulness.

Nancie

Charlene1 · November 2016

_{Hi everyone, today I will have infusion 8 of 12 Taxol treatments I am doing Taxol only I see most of you are doing A/C and then Taxol or a different combination and I though I would post my experience with the Taxol.}

_{I take 5 steroids 12 hours beforehand and another 5 6 hours before Chemo, they give me Benadryl and zanax premeds by IV, I also get a Zofran and a maxaran (both anti nausea drugs) then the Taxol - entire infusion time is about 2 hours. I do get restless leg syndrome with the Benadryl but have food keeping my feet firmly on the floor or standing and walking around eases it.}

_{Infusion 1 - only SE was numb toes, constipation}

_{Infusion 2 - SE's - numb feet, 1 day of mild nausea, constipation. extremely dry skin}

_{Infusion 3 - SE's - neuropathy to feet and hands, mild nausea, tingling of scalp and hair starting to shed, constipation, dry skin}

_{Infusion 4 - SE's - neuropathy hands and feet, slight headache and hair falling out in clumps, joint pain, fatigue, constipation, very dry skin}

_{Infusion 5 - SE's - neuropathy hands and feet, hair loss slowing down, joint pain, constipation, all over feeing like I am coming down with the flu. dry skin}

_{Infusion 6 = SE's - acid reflux, neuropathy hands and feet, HAIR STABLE AND NO LONGER FALLING OUT, joint pain, slight headache}_{, mild nausea, 2 days of not feeling great, dry skin}

_{Infusion 7 - acid reflux, neuropathy hands and feet, nausea, joint pain, headache, fatigue, dry skin}

_{All my side effects have been mild to moderate and quite manageable I have noticed that when I started the first few infusions that I was amped up on Steriods for a few days before I crashed and the SE appeared, but now they usually kick in by day 2 after infusion and now last 2 to 3 days instead of 1.}

_{I have had no nail issues, I did cut them quite short beforehand and they are quite brittle but that is it. I did not ice nor does anyone at the Cancer Center I go t_{Eyebrows and Eyelashes - have had no loss of them whatsoever}}

_{Wishing everyone well}

Abracadabra · November 2016

Charlene - Thanks for your very detailed summary of your Taxol experience to date. Is the neuropathy cumulative, or does it subside after each treatment? How are your hands and feet feeling at this point? I have one more AC to go, then I'll be starting the Taxol phase ... I'm so interested in your experiences.

Thanks, Barb

Charlene1 · November 2016

Hi Barb,

the neuropathy seems to come and go around day 3 it starts and by day 5 or 6 it is pretty much gone other than my toes which are numb all the time. My biggest aliment is the joint and bone pain which also comes and goes but my MO is trying different drugs to help with it but so far have not find one I can tolerate.

Overall this Chemo experience is a walk in the park compared to the Cisplastin I had for my throat ( that is one nasty drug)

Abracadabra · November 2016

Thanks for the info ... I guess I'm trying to hope for the best, and plan for the worst! I asked my nurse about Taxol neuropathy and icing, and she said that they don't recommend icing (but will accommodate anyone who wants to). Can't say I'm particularly tempted on these snowy Montreal mornings!

So great that you are 2/3 of the way through ... getting so close to the end of this phase! I'm used to having 3 weeks between treatments, and imagine that moving to weekly will be an adjustment. I've finally persuaded my MO to install a port (scheduled for next Monday), so hopefully my veins will be spared. Thanks again for sharing your experience ... it gives me strength to know that I'm following in the steps of others who are getting it done!.

Barb

KLNiss · November 2016

Hi Ladies - after my last post I slid into some unpleasant side effects - a full week after chemo. Trying to manage myself out of them now. If anyone needs help on anal fissures, let me know. Otherwise, I'll keep this post torso up. : )

I have the dreaded mouth sores, even after the preventive care. Any advice on speeding up the healing process? anyone use orajel for comfort?

I also have tingling in my left thumb.

I am going to AC chemo #4 today - last of the AC!!!! Headed in with the tingling, mouth sores, fissures and some serious fatigue. Hoping the steroids help me get through the first couple of days. But, I am worried about next week.

Xylitol over night tabs - I have been using these intermittently since the sores came. They are helpful - back to drooling on the pillow - but they can leave the area where you put them irritated.

Connie1230 - I start my carbo/taxol cocktail on 12/9. Just a few days after you. I will be going weekly for 12 weeks, with carbo on weeks 1, 4, 7 and 10.

thanks for all the taxol posts. I find them helpful and encouraging.

welcome to the new posters!

xo - Kathy

Luwusu · November 2016

hi Kathy,

You are probably using the Biotene toothpaste and mouthwash- but just wanted to mention it. My dentist also said she could prescribe a wash for me if I needed it. I have been using Biotene products since chemo #1 and have only had one small sore on the roof of my mouth.

Some people have lots of side effects with Taxol, and some not as much. I had week #6 last Wednesday. My side effects have all been manageable.

I'm sorry that you've been dealing with SEs from your current drugs. That's no picnic. Hope things get better soon.

Let me know if you have any Taxol questions. I have 6 weekly treatments left if it, along with Perjeta and Herceotin 2 more times.

Nancie

Nfullblume · November 2016

Hey hey ladies!! Question for those who didn't razor their heads clean...are some of your hairs still hanging on? I'm on day 24 and I feel like the hair has really slowed down on coming out. Only a few hairs on my pillow at night. Will it all fall out and look like Mr Clean? It is it possible some are strong enough to hang in there?

Connie1230 · November 2016

I buzzed my head and still have stubble after all 4 AC treatments. I imagine it would look pretty pathetic if it weren't buzzed but no, it's not Mr. Clean smooth by a long shot.

KLNiss, it looks like I have Carboplatin all 12 times according to the treatment plan the oncologist gave me. Sorry to hear of your side effects. I have no helpful hints for you though....wish I did. Can't say I'm looking forward to starting another regime. Hope this goes smoothly

VLH · November 2016

Nfullblume & Connie, You were reading my mind! With the holiday & AC #3 landing me in the ER, we delayed AC #4 until next week, but I've been surprised at how much stubble I still have. I expected to have a smooth noggin by now. Ironically, I found a lovely, long hair in my 'stache area. DOH! I'm fighting a frequent runny nose, as others have mentioned. I don't know if I've lost nose hair as a contributing factor to the sniffles, but it's annoying.

Betty, I've spent holidays alone a few times over the years. I generally enjoy quiet time alone, but holidays are definitely associated with family. As a side note, my best friend of 25 years & my mom's best friend of decades are both named Betty. :-)

Charlene1, Thank you so much for the detailed summary of your Taxol experience & related tips. I hope that Taxol isn't as, well, taxing as the AC treatment has been the last couple of weeks.

Dee Mendoza, We're on a similar program except that I'll have 12 weekly Taxol treatments. Good luck & keep us posted!

Whistlestop, as cathartic as the plate slamming sounds, please don't use that release technique if there is a possibility of a dog walking in the area. I've dropped glass items in the kitchen & have been amazed at how some tiny bit of glass will escape the broom, vacuum AND lint roller to embed itself in my feet. I avoid being barefoot outside, but my dogs obviously run around with exposed tootsies all the time. I haven't played video games in ages, but maybe shoot some aliens or scream into a pillow instead? ;-)

Luwusu, I'm having some weird skin issues just on the AC so am concerned about what added fun will come with the Taxol. Where I rest my crossed left leg over the right, I got a 2x2 inch rash which progressed to bumps and the "age spot" that is there became raw & irritated. I haven't seen the oncologist since this happened so no idea how common it is. It's difficult to avoid the leg cross because it helps with the chronic pain related to a herniated disc & sacroiliac joint issue. I also noticed that the sole of my left foot is bright red. That caught my eye because my skin has been super dry & I was putting some Burt's Bees coconut foot cream on my heels. I bought a tub of organic coconut oil at Sprouts this week because I think it has some natural antiseptic as well as moisturizing aspects to it. I also got a nasty paper cut from, of all things, the cardboard half page on the cover of a cancer resources magazine. Sigh...

Kathy, thanks for the reminder of the melts for mouth sores. I should put those on my Amazon Wish List for the next order I place. I've used AmazonFresh twice now & it's fantabulous! I picked up a handful of things at Sprouts that Amazon didn't carry, but scooted in & out of there quickly. After the incicdent where I ended up lying down in the frozen food aisle at Target, I've been a bit apprehensive about shopping.

Lyn

Abracadabra · November 2016

Kathy - When I had mouthsores, my MO gave me a prescription for magic mouthwash. They mixed it together at the pharmacy, and it really did the trick for me within a day or so. Maybe an option for you!?

Nfullblume - I started AC chemo on Oct 3, and I still have quite a lot of hair on my head (my hubbie says maybe 20% left). It's fair and very short and evenly spread out, so not very visible when my head is bare, but I don't think it's going anywhere soon! No new hair has appeared in my armpits for a while, but my legs still produce the odd hair here and there. Still have my eyelashes and eyebrows, so I'm not complaining! I'm going crazy with mascara everyday, just in case that window closes soon (I love my mascara!!!) LOL

Lyn - Glad to have you back! Sorry you've have struggles ... I love that you keep your sense of humour!

All is well here ... I'm feeling pretty good after AC #3 on Monday ... I guess I've adjusted to everything because this time my energy is good, no nausea, and not even any SEs from the dreaded daily belly shots of Neupogen (still cannot believe I am doing it, but I am doing it!). Am convinced that the swimming and yoga and walking are helping to move the chemo toxins through my system, and really helping me through this.

Hugs to all,

Barb

VLH · November 2016

Yay, Barb, on adapting to the tummy shots!

Free HBO / Cinemax / Epic for four days so spending far too much time in front of the boob tube (noting the expression is especially appropriate for us, yes?). ;-)

Lyn

Abracadabra · November 2016

I wish I could watch some tv ... I'm still on dexamethasone from Monday's chemo, and tonight I have the attention span of a flea on steroids!!! I keep jumping up to start a new project (like cleaning out the guest room closet), then getting distracted and wandering off to something else (ok ... I did stuff all the crap back into the closet, but I'm afraid of what's gonna happen the next time that door gets opened!).

Can't focus on tv, can't read ... feel like I'm counting down the hours until I can take a generous serving of Ativan and go to sleep. In the grand scheme of things, not much to complain about, but I'm getting on my own nerves! (Already warned husband and son that I'm in a mood tonight, so they are keeping a safe distance.)

That's all I've got. Have a nice night!

Barb

Nfullblume · November 2016

thanks for the info on the stubble, guys. I'd be ok with keeping some!! I shaved my legs this week and I don't think they've ever been this soft. A silver lining! I'm heading in on Wednesday for #3. Ive got most of my Christmas shopping done and got a lot of wrapping done tonight. Yay!

I hope you all have a great weekend

Anyone.Starting Chemo in October 2016?

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