Starting Chemo March 2015

Jem27

Hi All, apologies I have not logged in for awhile. Delighted to see so many of you have finished your chemo. I have finished my adriamycin and cytoxin and have just completed round 2 of taxol. 10 more to go. I ended up getting a picc line for my 4th AC dose as my veins got very sore. It has turned out to be a blessing in disguise. At least I dont have to worry about being prodded weekly for the Taxol or lab draws. The L glutamine sounds promising . I hope I am allowed take it. Unfortunately my neutrophils and WBC did not come up wth the neulasta shots so I now have to get neupogen shots on a Tuesday and Wednesday, bloods draw on a Thursday and then the Taxol on the Friday . Just as well I live near the clinic or my gas bill would be crazy too !! I am forever grateful for this blog , I have learned so much and felt your support .

Hugs to all

Jackie xo

DavisD

pboi-I'm so sorry you have to deal with more of this beast. We would all embrace you and help if we lived closer.

Since most of you are further out from last chemo than I am maybe you'll have some suggestions...when I took off my scarf yesterday I noticed tons of little flecks of dried skin, I think. What did you do to help prepare your scalp to start growing hair in terms of supplements/topicals?  It's kind of exciting thinking about working toward growing hair back instead of losing more! Any suggestions would be appreciated.

molly1976

Diane, have you been shampooing your bald head? I did, although I'm not sure why (habit?) and I didn't notice any of the flaking after chemo. Maybe try using conditioner in the shower?

eheinrich

Coconut oil! I rub a bit on at night.

Jackbirdie

Diane- I'll chime in with Molly and Eileen here and say I do both. My stylist made a big deal to me of washing my scalp because I had some flaking. She washed it the day she noticed, then conditioned. It got better immediately and I continued.

I also put coconut oil on every night. I happen to use the Skin Food one with the lavender infused. It doesn't seem to irritate my scalp and helps me sleep I think.

My hair is coming in slowly, but softly and no flaking. Yay!

In other news, I had a few days after round 6 where I thought maybe it wouldn't hit so bad. But now the full array of SEs, aches and pains, have arrived and are camped out with me in bed. This time, for the first time, the nausea continues. So glad it's the last.

SpecialK

My hairdresser indicated that making sure the scalp was clean would help the hair come in - flaky skin or residue from anything topical can block the hair follicles.  I would suggest that moisturizing the scalp is a good idea, but also wash your scalp a lot too.  I am one that did not have hair that grew back curly, mine grew in straight and stuck out like a chia pet. I had very straight hair prior to chemo and it has grown back the same way.  I had to use a lot of sticky product to get it to lay down so as not to look like I had just been electrocuted, so had to wash my hair a lot more when it was short compared to what I do when it is long. She also recommended taking Biotin (I take 5,000mg, and am careful to use one that does not contain soy), but said not to start it until 3 weeks PFC, any earlier was a waste of money.

so-she-did

I had major folliculitis and then dandruff about a week after my hair fell out. I have found that Selson Blue does the trick. There are different formulas but I got the one recommended for folliculitis that has selenium sulfide in it. I haven't had trouble with dandruff or folliculitis since I started using it.

Jackbirdie

just wanted to say

WAAAAAAAAA!!!!

This is the worst. Everything hurts. I want it to stop now. Please someone remind me it's almost over......I'm losing it.

Italychick

Katy, hang in there. You are almost done. I had my worst fatigue three weeks after my last chemo treatment, but other than burning feet, all other side effects seem to be gone one month after last infusion. I was really surprised about the fatigue I felt three weeks post chemo, but my husband said it was because the steroids really do a number on the adrenals and it takes time to recover. still slower on my bike, so I know I still have residual effects, but they aren't as noticeable during normal activities except for the feet.

Jackbirdie

Thanks T. Made me feel better just hearing your strong "voice".

BBwithBC45

Hi Katy. All I can say is this too shall pass. I know, it's a slogan but it helped me many times.

Now, if only the sudden, late, surprise neuropathy passed instead of getting stronger almost 6 weeks PFC...

so-she-did

Katy - cozy down with Jack and Tutti, ride it out as best you can with your meds, and know that the end of the worst of the worst SEs will be behind you soon. Then it is all about recovery and rebuilding after that.

Jackbirdie

BB- a good slogan. Thanks.

Amy- thank you too. Every word from you guys is some o dat salve

avmom

Oh, Katy, hang in there. Keep in mind that you. are. done. No more infusions! Your only task now is to just let your body flush the last infusion out, and let the recovery begin. Like Theresa, my fatigue was worse after my last spa day. It really is cumulative.


I am now nearly 3 weeks pfc, and yesterday, for the first time in a very long time, I slept fairly well overnight, and could feel that I had a bit more energy. I'm not "there" yet, not by a long shot, but I believe that things are on the mend.


Have a quiet day cuddling with your fur babies. You will feel better soon.

Beachbum1023

Hi everyone, I thought some baby mallards would bring a smile to your day. And pretty flowers are always good! I hope you are all having a peaceful, restful day! Cheryl

Jackbirdie

Beautiful, Cheryl, and adorable. Little lives.

Thanks Avmom, I know you've suffered and understand. It's just the worst now.

I know it will get better soon.

Thanks everyone

greenae

Jackie

You Can Do It! The Sunday after my thursday infusions was the worst. Just lay around, eat lightly and often, snuggle with your babies. It Will Pass. My neuropathy didn't kick in til the last TC, and I still have it, but it's improving. Get through this week and Everything will start to feel Better! I Swear! You are a Trooper and an Amazing voice for All of Us!

F this BC! We Are Strong!

Love, arlene

Jackbirdie

Thanks Arlene. Every word is helping, guys

Italychick

BB, what neuropathy symptoms are you feeling? My feet hurt today, but I also went to the fair Friday and was on my feet for 10 hours. It is this burning inside with numb spots and a feeling like I have sticky tape stuck to the bottom of my feet for me.

MO said it should fade with time, but it is concerning. I have upped all my neuropathy supplements In hopes they will help. MO said take alpha lipoic acid and B6. I don't do l-glutamine because I found research saying it helps cancer cells survive. I am interested if anybody thinks differently, and has research links.

http://www.nature.com/cr/journal/v23/n5/full/cr201...

pboi

Thanks, Diane!

Hang in there Katy! This was the last infusion, and little by little you WILL start to feel better. Bye bye chemo...and it's awful side effects! Hoping you feel better very soon.

PB

Beachbum1023

Jackbirdie, every passing minute helps! You are getting further away, and headed the right direction. Sleep if you, you can count dead cancer cells instead of sheep!! F cancer, F cancer, F cancer, you'll be snoring soon...............feel better. Damn side-a-f*&ks!

greenae

hi Theresa

My neuropathy started with some numbness in balls of feet and all toes, 3 days after the TC infusions. 2 weeks After the last TC (4 total), I felt numbness, itchiness (horrible), burning and pain in my hands and feet. It lasted about 10 days. Now, 4 1/2 weeks PFC, I still have numbness, and achiness kicks in at end of day, just in my feet. It is so much better, but still there. My MO said B complex and Biotin supplements, only. She said hopefully, the neuropathy will fade with time, since it really didn't kick in full force til the last infusion. I still ride my stationary, and I stick my feet in cold water before bed. Ice packs for 20minutes help, as well as keeping up with fluids to flush this crap out. If it doesn't go away, or gets worse, there's PT and Neurontin. But I prefer to not take meds. I have surgery July 7, so maybe be off my feet for a few weeks will help?

I hope yours is improving? I have read that we need 8 weeks PFC before the taxanes are mostly out of us. At least it doesn't afffect pedalling. Alto I do trip every so often when walking. Ugh. Lol

Let's Keep on Truckin'

Hugs!

Arlene

pboi

Theresa...how far PFC are you? My neuropathy didn't start until almost the end of chemo. And even got worse PFC. I've even heard of symptoms worsening a few weeks PFC, so it might linger awhile. Unfortunately with nerves, things often heal very slowly. My MO whose been in practice 15 years, says he's only had one patient end up with permanent neuropathy, so this will likely go away, but I know it's so hard to be patient and you just want it to be gone NOW!

The fair sounds like fun, but perhaps being on your feet that long aggravated it?

PB

pboi

I've been relying on Ativan for most nights to sleep during chemo, which was great so I could get at least 5 or so hours of good sleep. Now that chemo is over, I've been weaning myself off of the Ativan. But now I'm finding that as I'm lowering my Ativan dose I'm waking up throughout the night with night sweats.

Anyone else having a lot of night sweats? Tips on how to get through them and sleep?

PB

BBwithBC45

Theresa, I don't have any mentionable pain. For me it is numbness in my left foot - part of the heel, outer side of my sole, going up to the ankle. I can feel the temperature when I touch it with something cold, but I cannot feel regular touch.

I have similar numbness on my right leg, by the knee and outer thigh, but this one doesn't bother me much.

This morning I woke up with half of my right hand being completely numb. Eventually bout 90% of the numbness left, but pinky and ring finger are still tingling and slightly numb 9 hours later.

Throughout chemo I didn't have much neuropathy, occasional tingling in my hands that went away quickly. After chemo my MO told me to continue with L-Glutamine for 4 weeks, so I did. Few days after I stopped, I noticed the numbness - it could be just coincidence. What bothers me, is that it came on so late after PFC, and now it seems to be progressing to my hands. I have been taking B6 too.

What other neuropathy supplements are you taking?

I'm going to ask my MO about alpha lipoic acid. Not happy about your L-Glutamine news. The deeper I get into this cancer business, the more I realize there is so much they don't know about it yet. Frustrating and anxiety inducing.

eheinrich

Katy: You got this. It's almost over.

((hugs))

SueH58

Nice little Hershey squirt at Kohls Dept Store today--how pleasant and unexpected!

Trvler

Katy: I know you can do it!! Just take it easy and be kind to yourself. I am glad you have Jack and Tutti keeping you company.

Theresa: Ugh on the glutamine. THIS is why I didn't stop eating anything and hate starting anything. So many mixed messages. I just get stuck.

I need to do something about my scalp. I have very dry skin anyway and my scalp is dry. I will try more coconut oil. I am not seeing any growth yet, as many times a day as I check.

PB: I was told magnesium helped hot flashes. And exercise. I am doing both and my flashes are pretty mild in comparison, I think. I also find that if I get cold at night (and I do sometimes because I have cranked up the AC), then put a lot of blankets on it will bring on the flashes. My temperature regulator is off, but not terrible.

AV: So glad you are feeling more energetic!

I am also trying to wean off Xanax. I am allowing myself to take it two nights a week, the night of and after chemo and if I lay away all night, so be it. I am lucky that my schedule is pretty light during summer with the kids in their various camps. The good news is my daughter is doing better at camp and I doubt she will get sent home. I actually really miss her now, but I can use the break.

Going for #6 Tuesday so I will be halfway through Taxol. I just wish I could feel this stupid cancer getting smaller and I swear if feels bigger to me.

Italychick

Arlene, my husband rubs my calves and feet before bed, and it helps me get to sleep. If he can't, I lay on my stomach and curl my toes under and push up. That seems to help too. I also do the water bath with Epsom salts in there, feels so good! So I am wondering if a part of the foot issue is that our leg muscles are affected by all the chemo we got.

Avmom, I also take Benfotiamine, but I stopped all that during chemo because it was an antioxidant and I cut those out during chemo. B6, B12, choline, potassium, magnesium. I had foot neuropathy once years ago from wearing high heels, and my hubby put me on these supplements and it went away, so I'm hopeful.

I am 30 days from last chemo infusion. Hope this foot pain goes away!

Pboi, I do a lukewarm bath before bed, and it seems to help with night sweats. I also check with hubby, because most of the time when I have them he does too, and he didn't do chemo, so that helps me realize it might just be normal.

Allison, a lot of my new hair growth is coming in white and is hard to see. I get a magnifying glass to look, or have my husband take a picture I can look at. You are blonde, right? So maybe yours are growing in so light you can't see them yet, fingers crossed. I have a lot of dark little nubs, kind of look like blackheads at the surface of the skin, so that might be hair follicles coming back.

My son is having an end of chemo celebration party for me starting in an hour, hooray!

SueH58, don't ya love it? I have been wearing the extra long panty liners just in case, but things seem to be stabilizing now, but I keep wearing them because I don't know what will happen with herceptin only.

Sometimes I feel like the doctors panic us and are overboard. I think to myself how is breast cancer different than other cancers, and why are we put in such an extreme position of panic? And then I will get an ache or pain (knee hurts right now), and the worry train is off and running again. I hate it.

DavisD

I have been shampooing my bald head but only every other day. Haven't been using conditioner. I do have coconut oil so I'll try that. It might have just been a fluke thing, I didn't notice the flaking any other time. I really appreciate all the suggestions and encouragement, as always!

Katy THIS is why I wish we were all closer. You need some human distractions but I guess the furry ones will have to fill in for us. Just remember you've been here before and you made it through! Big hug!