Starting Chemo March 2015

mysunshine48

Wj

What is L-glutamine? I get numbness in my fingers and toes.

IndyGal35

Yep, that'll be round 6 and done with The Big Nasties. I haven't tried L-glutamine, but I will look it up!

As an interesting side note, I went to a new PS yesterday for a pre-surgery consult, and he said that they are starting to use Botox for pain relief in the chest muscle after putting tissue expanders in. Since Botox paralyzes the muscle, it makes sense that you wouldn't feel the soreness and stretching as much. Hooray for extra pain relief

SpecialK

mysunshine - L-Glutamine is an amino acid that is thought to reduce or prevent chemo induced peripheral neuropathy (CIPN) from taxane drugs.

 

molly1976

I took glutamine throughout Taxol and for a few weeks afterward (just finished it yesterday, actually) and did not get any numbness. I had some sore fingertips at the end but they are okay now.

ksusan

You mix it in a glass of water. Swish in the mouth and gargle with it for mouth and throat sores, then swallow for neuropathy. Ask your MO if you can try it: http://www.jarrow.com/product/301/L-Glutamine

pboi

Molly - how long did you continue the glutamine pfc? I am almost 2 weeks pfc, no numbness but still a little tingling in hands and feet. Trying to decide when to stop, didn't want to stop too soon and have the tingles come back.

PB

BBwithBC45

Pboi - my MO told me to continue for 4 weeks PFC, so I did. Few days later part of my left foot started going a little numb - I don't know, it might be just coincidence because I doubt that a month PFC I would suddenly develop neuropathy, would I? Anyway, since I still have some L-Glutamine left, I will finish the bottle and see if anything changes.

molly1976

I kept taking it until I ran out, which turned out to be 3.5 weeks PFC.

pboi

Molly - have you been taking it during rads? The nurse told me at my info session yesterday to stop all my supplements. I told her I have been taking B6 and glutamine. She told me to definitely stop the B6 but thought the glutamine would be ok. I think I might check with the RO to make sure.

PB

avmom

Hello, all.

I've had neuropathy pretty much throughout my four rounds of dose dense Taxol. It got worse each round, and after round 4, my toes had given up on stabilizing my feet when walking, so I have been using a cane just for balance. Both hands and feet are affected, and I was having trouble holding a pen. The numbness and pain was throughout my feet, and creeps up past my ankles as the day goes on. Sleeping has been tough.

But, now that I'm two weeks PFC, I think I'm starting to notice the neuropathy receding! My feet are still the same, but my baby fingers are starting to feel a bit more normal. I'm starting to hope that this, too, will pass.

On the minus side, I still have no appetite to speak of. I don't really get hungry, and nothing seems appealing. Things don't taste as funky as before, but I wouldn't say things taste normal yet. It's probably a good time to make some diet changes.

molly1976

PB, I did take it for the first couple days of rads. I saw the RO yesterday and they told me not to take any B complex or multi's during rads. Fortunately I am terrible about remembering to take my vitamins so I don't think I have taken any since I started.

Trvler

BB: I to remember hearing that neuropathy can develop afterwards. Maybe the other ladies can comment on whether this is true or not?

BBwithBC45

Allison, that would stink. Here, I thought I escaped it without neuropathy, and it may be catching up with me afterwards. I hope SpecialK chimes in, if she reads this. She's knowledgeable about those things.

Trvler

I would keep taking the glutamine for a while at least. I don't know. I need to take more. i am only taking it once a day. You have to mix it with cold water and keep stirring it because it doesn't mix with the water. I am feeling tingling in my body but no numbness unless I sit for a while and not necessarily in my toes, feet or fingers. But I am only on #5. I just came home.

BBwithBC45

I was taking it 3 times a day, but I couldn't stand the taste of it in the water, so I used to drink it with juice, cranberry or pomegranate. Much easier to tolerate.

You just came home from # 5 Taxol? You'll need your rest now. I don't know about you, but I used to be wiped out from the Benadryl (and also from cold capping).

Trvler

My Benedryl dose is down to 12.5 mg so it doesn't even affect me much.

ThePrincess

I told my MO the benedryl was too much for me ( I have to work all day after infusion ), she said Claritin 2 hours before infusion would be equivalent. Has worked fine, had second taxol today.

molly1976

I kind of liked the Benadryl! Fun wooziness! (but I did not try to do anything after except sit in my house.)

Trvler

I hate Benedryl. I got 50 mg the first time and my eyes were rolling back in my head. I didn't feel much like sleeping, although I did nap later on when I got home.

rleepac

I love my Benadryl/Ativan nap. It lasts almost the entire treatment so I get to sleep right through it. Works for me

Trvler

My night sleep is so f-up lately I hate to nap for fear of making it worse.

eheinrich

Has anyone started Tamoxifen yet? I'm ~2wks in. No problems so far (yay!)

Jackbirdie

E- great news on the Tamox! You must be so relieved.

So sorry about the continuing neuropathy everyone is experiencing. Hopefully it will recede pfc for all.

Here's today's Jack and Tutti check:

Getting along great!

lovlilynne

FYI, another data point, my MO said to take the L-glutemine 10mg 3x a day for only 3 days (day of Taxol+2). Also, I read not to take or mix with anything acidic as it negates the effectiveness. Not that it matters, I'm having neuropathy in fingers and feet anyway (unless it would be worse w/o glutemine).

BBwithBC45

E - I started tamoxifen 2 weeks ago too. So far just hot flashes, but I've had them with chemo too.

Katy, I missed Jack! Tutti is adorable.

Lynne - yikes, that means that I was taking L-Glutamine all this time for nothing, because I was drinking it with juice? Boo hiss.

so-she-did

Just had my brain MRI and bone scan. Now I'm freaked out that I am having my port taken out tomorrow and I might need it in the future. Ugh, I hate worrying

eheinrich

After the no raw veggie situation through all the chemo I have become a salad fiend - I was so-so about it previously. So fun. Going out for sushi tonight. My daughter's last night in town, a little celebration.

Trvler

Amy: I am counting the minutes til that stupid port comes out!

pboi

I liked the Benadryl nap at infusion and would nap when I got home, but boy would I pay for it that night - sleeplessness. They let me take Zyrtec 2 hours before infusion as a substitute for the Benadryl and I slept better at night.

PB

Jackbirdie

Amy-try to think about something else today. It's normal to worry but they wouldn't be taking the port out if they had any real concerns. Think of it as a baseline for the future. Which sadly we all need. But for now, try to realize that there is little likelihood any cancer progressed while you were on chemo. I wish I could give you a little hug of encouragement. You've been so strong, and gotten through so much. We all have. It's scary territory out there without weekly blood work, Dr. appts out the yazoo, etc.

The next step for all of us, whenever our individual treatments are done, is to try to think about the little bitch less and less each day. I am already terrified at the thought of not being monitored every day/week/whatever. So allow yourself a little worry then stop.

I think you should plan a little party for yourself the first Saturday night after they take the port out. You did it! I'm sure nobody wants to tempt fate with forever proclamations. But for now, you have shown yourself (and your loved ones) just how strong you can be. I am very proud of you