April 2013 Chemo Group

Virginger

What Vitamins are you taking? Now I'm feeling like I left something out of my prep..

Irene1975

Has anyone taken Herbalife protein shakes during treatment. Pros or cons? Oncologist said it was ok, but he is on the other side of the treatment

indenial

I researched various vitamins & supplements but so many had possibilities of making the chemo less effective that I ultimately decided to take none of them. The only thing I'm taking now is l-glutamine, primarily to ward off neuropathy. Once chemo is done, I already have my list of supplements I plan to take to help my body recover quickly, but in the meantime I don't want to do anything that may interfere with chemo because I'm only doing this once!

AllieM

Indenial, I'm with ya on that!

I've asked my MO about various vitamins, supplements, herbal stuff, etc. and he said don't bother with that, you are taking enough pills already. I decided to do the l-glutamine anyway, because I found a couple of verifiable studies that say it may help and doesn't hurt. Otherwise, I try to eat the foods that include some of the things suggested such as omega 3's, selenium, magnesium, vit C....Also drink green and herbal teas, put some chia seed in my cereal. I grow a lot of herbs, so I just add a bit of this and that to my food.

Skigirl72

Here is my list.

womans multi, 6000 IU D3, lysine, B6, B12, cal/mag/zinc and prilosec. Most of the time if I hear of something to take I google it to death and then before I take it I test my MO. I go in and say "ok so I started taking this vitamin for this reason. That's ok right?"  I get my answer because you have forced her to make a decision. If you just simply ask... alot of times they will just say don't bother. So, I force the issue for things I read, hear, see... especially if I think it will benefit me somehow.

You are doing way more research than they are right now. So, coming to them with information is beneficial to you... and expect answers and reasons. Not just a blanket no or don't bother. This happened with Vitamin D. I asked my primary if I should take more vit D (I have 1000 IU in my multi) and he said no I was fine. No test...nothing. HAHA nope, wrong answer. I went to my MO and after 4 months of taking 6000IU of Vit D my level was 47. She said to keep taking this amount and my levels were ok, not great.

Anyway, my point is be you own advocate. I am constantly reading and learning more about this disease. There is so much to earn and a ton of studies being done. Hopefully they will find a cure.... someday.

jo92879

I started chemo on April 2nd and it was by far the hardest part of this journey for me, there was no turing back. I have yet to start loosing my hair and I think I may be in denial about it. It scares me. My next treatment is on the 17th and I just pray that this time goes better. Any advice or support would be so helpful...

LKSHER

Okay, so I started yesterday at 1:30 and finished around 6:30, went to dinner, been feeling fine. Woke up around 3am in cold sweat and shaky, drenched pillows and sheets and jammies. Hard to open left eye. Got it open. Husband helped me to bathroom....think I was panicking...changed clothes and pillows, took an Ativan and went right back to sleep. Woke up like normal. Took meds this am, plus colace and mirilax. Took Claritin for Neulasta later today....I feel fine today.

Question: Is it true tomorrow will start sucking? I know everyone is different.

I am drinking a ton of water.

Jen987

Well I crashed and burned again and made my second visit to the E.R. this week on Wednesday. I had an excruciating headache again after having the spinal tap and they told me to come back in. Finally after 5 hours they performed a blood patch to close up the spinal fluid that was leaking. Today I actually feel a little better after laying flat for the past few days. Now I'll have 1 good week before my next infusion and hope that nothing like this happens again. We have to figure out which medication gave me the horrible headache. Hope you all are hanging on and having minimal side effects. Rest and take care of yourselves.

LKSHER

Oh boy. So scared of the Neulasta shot now. My counts were very high, so sounds like I will have more pain. Wonder if I should take Aleve?

daffyc

Waving "hi" to all my fellow April chemo starters.  This is my first post on this site, but I've lurked for a few weeks now gathering some valuable information!

I had my first infusion of neoadjuvant dose dense A/C this past Wednesday, the 10th.  So far, not too bad with SE.  A bit of nausea, but (knocking on wood) it's not been too bad and controlled.  A bit of constipation, but finally some success there, too:)

Cut my hair shorter (about 6 inches off) and it's about mid neck length now.  I haven't felt the need to shave it yet and kind of want to see what happens as it comes out.  I feel like I will know when it's time to be done with it and shave it all off.  Wig bought that's pretty cute and a variety of hats and scarves.  I'm not 'hip' or super stylish, but hope to have a little fun with all this.  

I have 3 boys, ages 8, 12, and 16.  My husband is active duty Navy.  So far his job has been fantastic with giving him time off for appts and chemo days.  It will get a little tougher in months to come when his ship is set to sail (so to speak), but we'll work with that when we get to it. 

Just moved to our new duty station a few weeks before diagnosis.  No family and few friends in the area.  BUT, it is amazing how people have been placed in my life that are lifting some of those day to day burdens.  

Looking forward to getting to know you all better and wade through some of the great information some of you have!  Hopefully be able to contribute more myself as I get more knowledgeable.  

daffyc

One question...has anyone had sinus headaches as a SE?  I do get them once in awhile normally, but I'm definitely thinking there must be a link to the chemo as one started the afternoon after my first treatment.  Went away, came back, etc... now on day 3 still there.  That's not really normal for me.  But, allergies are going around as well.  So who knows.  Not a regular headache tho.

Just wondering if anyone else has experienced this.  

indenial

I was told Cytoxan can cause a sinus headache, they can slow down the drip to help with that. Not sure whether you would still feel it now if that's what it's from, but maybe?

I'm on day 3 as well & feeling basically fine... waiting for the worst to hit is a bit anxiety-provoking, I want to enjoy feeling good right now but don't want to set myself up for disappointment when I come crashing down! I have a sore throat, slight headache (probably the rain), occasional short-lived aches & pains but nothing major. I feel just as good or maybe a bit better than usual, but I have been chronically ill for many years so I don't have very high standards lol. 

Tricia81

I'm so disappointed right now. I went in for my first chemo treatment this morning and my MO told me that a spot showed up on my liver in the CAT Scan. It's 17mm. So I have to have an MRI later this afternoon to see if the MRI can tell us if it's bein or not. I was feelin so prepared for my chemo and was in such good spirits. Now Im sick to my stomach! I'm praying that this is just one small snag in the road and the spot is nothing. I don't think I can handle more bad news.

BeHereNow

Daffyc-I have had horrible sinus problems since chemo. I was afraid I was getting infection, so they put me on antibiotics. I was told not to take Tylenol. I am on Claritin because of neulasta. I'm doing nasal rinses with my neti pot. Today I added plain mucinex. After a week of this, I don't feel any better!



Thanks for the opportunity to vent! Lol



Lksher-what counts are up that makes you think neulasta will give you more bone pain?



Jen987-I'm so sorry you are going through all the headaches, ER visits, spinal tap, etc.! I hope your MO will be able to get things sorted out. I hate the thought of you suffering any more than you have. Hang in there!



Jo92879-welcome! What kind of information would be most helpful for you?



Skigirl72- you are a great self advocate. I take D3, as well. 50,000IU on Mondays and 1000IUs daily the rest of the week.



I also take a multi, B50, B12, calcium/magnesium, and iron--but I have other medical issues, so don't necessarily recommend what I do.

BeHereNow

Tricia 81- that's awful! I would feel very upset. It's scary and also you were mentally prepared to get started! I hope they can move through the testing quickly and get you back on track. At one point during diagnosis I told the scheduler I just couldn't wait a week, because I had too much anxiety, so she brought me in the next day. It's ok to make some demands . Sending you warm thoughts. Be gentle with yourself.

Jen987

My sister in-law sends me words of inspiration everyday and I thought I'd share today's with you all.





Grant me the strength to win this battle, courage for the journey & wisdom to recognize hope in each day’s triumphs.

Jen987

Did all of you that received the Neulesta injection have labs drawn first to see if you even needed the shot? I did not, they just gave it to me two days after my first infusion. I'm starting to think maybe I didn't need it because when I was in the E.R. my WBC was elevated twice what it should have been. Maybe that's why my headache was so severe.

Jen987

Tricia81: You are in my thoughts.

LKSHER

I just meant my blood counts were really good to start. Actually WBC read mildly high.

heather214

LKSHER, so awesome it went better than you thought. I think for most of us, that is how it ends up. Although, I have one week to #2 and am getting terrified. I hope I don't get as sick this time!

Skigirl72

Sinus issues- Ask to have the cytoxan slowed way down... That is known to give sinus troubles. I had trouble the first go around with it. They slowed it down the next time and no issues.

I never had the neulesta shot but I would want blood work done to see if I even needed the shot. Sounds like the extremely high counts are a source of a lot of pain. I was on the every 3 weeks AC plan and my counts hovered around the very low acceptable range. The 4th tx they were too low so they just postponed me for a few days. I never needed to ask about the shot. hmmm.

heather214

Tricia,

I am so sorry for that, will be praying for you! Just realized we are within about 45 minutes of one another! Message me if you need any support, hang in there!

                                                                                            ((Heather))

heather214

Jo92879,

I started about 1 1/2 weeks ago, and honestly I thought I would die, I got SO sick. With #2 coming next week, the panic is slowly building. I am trying to tell myself that #1 was a shock to my body, and #2 HAS got to be easier. When I think long-term, like the 1 1/2 years of treatment I am looking at, I cannot deal with it. Just deal with day to day, or week to week. I don't know if you are spiritual, but my faith gets me through when it seems too much. I give it up to God when I know it is way more than I can handle. Now that I know of some of the tips these ladies have given me, like the Claritin for the Neulasta, I feel more in control of the side effects. Just be kind to yourself, and make sure you seek out all the support you can find. (((HUGS))),

                                                                                           Heather

heather214

Can anyone tell me when they started the Herceptin? I don't think I shared, but my oncologist was NOT my first, or second, choice. My insurance has been awful, and he does not seem too on top of things. I saw them about a week ago, and asked when I would start the Herceptin. Again, I am one of the only one's it seems getting preadjuvant chemo. The Dr. told me "At the next visit". I forgot to ask why. I was of the understanding that chemo and the Herceptin start at the same time? I love my surgeon, but he himself told me my Dr. is an idiot. Great. That is why I feel like I have to be such a good advocate for myself, like Skigirl (girl, you amaze me!) but don't always have the time or remember things I want to/need to ask.

jo92879

BeHereNow: I'm not sure. All of my life I have been a planner, I can't plan for any of this. I don't know what to expect and I tend to let my imagination run wild. I have several family members who have gone through chemo and have seen way too much. I am terrified of losing my hair. I have already had to give up school, my breasts, and now my hair? It's overwhelming. Does anyone know what it's going to feel like once it starts to fall out?

heather214: I too am starting to panic about round 2. I was getting like this anticipatory nauseated feeling every time I would think about round 1. I have had four good days in a row and although I am still nervous to go back, I'm not as nervous as I was several days ago. I have spoken with with my MO about the meds I was on and I think he is going to adjust them for me. I had a good cry session in the shower the other day and begged God to take this because it is just so unbearable at times. Thank you for reaching out to me 

daffyc

Tricia81, uggh, that stinks about the spot on the liver.

I, too, am dealing with a similar situation.  A small spot, less than a cm, lit up on my liver in the Petscan.  Slightly smaller on MRI.  Can't locate it on ultrasound so can't get a biopsy (and it's evidently in a tough location to get).  I had a second opinion and second ultrasound at a more renowned Cancer institute and they couldn't get a biopsy either.  No one will risk opening me up and trying to get a biopsy that way.

There seems to be the feeling that it's nothing, but they just don't know for sure.  For now, they, my team, and docs from the 2nd opinion, all agreed that it's best for me to do the neoadjuvant chemo.  I will rescan after my 4 dose dense cycles of AC and then we might know more of what is going on.  Or not.  So, unless they can get a biopsy at some point, it's really best educated medical guess.  Not too reassuring, but I'm trying to not think too much about it at this point and just get through the next 3 cycles of chemo.

I hope you are able to get some better answers than I have.  I've not done too much research, but it seems they have these random spots show up on premenopausal women, not to mention many of us have never had MRI or CT/Petscans before to have a comparison.  Just found out about a week ago that a friend who went through this had the similar liver spot and for her it turned out to be nothing.  So there is at least hope!!

Many hugs, it's so frustrating for sure.  

Virginger

Well had my first treatment yesterday....went in @ 8:30am and was out the door by 12:30...had a friend from High School fly in to be with me and we passed the time laughing and drinking LOTS of water....made sure to chew some ice when getting my second drug...no pain to really speak of...we went to lunch...did a little shopping, I'm from a VERY small town so took my buddy to Garden Ridge...she shopped and i hit the bathroom a few times and rested...had a little bit of an upset stomach but never got sick...took some pepto bismol chewables and that really seemed to help...had a relaxing evening.

BeHereNow

Jo- my hair is beginning to fall out. I've heard our scalp gets tender, and that has been my experience so far. I hear you on all the losses. It feels like there is little time to grieve before we get hit with the next thing. I had an awesome appointment with an oncology counselor at my hospital. It helped me tremendously.



My heart breaks to know how much pain and fear so many of us face. We are not alone.



I've gone through three family members' cancer, and agree it adds to the anxiety for me. My husband, too, saw his mother go through it, so he's asked me not to wear the kind of hats she wore. He doesn't want to be triggered.



To add to the fear factor, my husband was diagnosed with chronic lymphocytic leukemia this past October.



We will get through this. It's totally doable. Thanks for sharing. It helps us all.

BeHereNow

Glad to hear your chemo day went well, Virginia!

BeHereNow

Once it starts, how quickly is hair loss really noticeable?