January 2013 chemo group

SherylB

skimommi,

Yes I started the claritin day before chemo and am still taking it 7 days later. I figure it doesn't hurt anything. I have a bad back per MRI but just kept on going. Don't know why so much back pain right now. I actually took a copy of my MRI from 3.5 years ago to my MO today and she has referred me to a pain specialist. I don't know why the pain I just know it takes my breath away. I am doing pretty well otherwise, drinking a gal. per day plus, eating better, sugars much more controlled. Still have a couple of bad habits I haven't given up yet. All I can do is "keep on swimming" from Finding Nemo.

Sheryl

Skigirl72

Colleen- definitely not heat... not for our kind of swelling. No hot tubs, really hot showers... etc. That sucks for me b/c I love steaming hot showers I have been taking a few extra minutes in the shower and using soap to just rub the swollen area under my arm to try to get things moving. I think it's working. That's the advice the nurse at the PS office said when I saw her last. So good luck!! 

Watta- All 24 pages!! Good Job! I miss just half a day sometimes and I am reading a few pages to get caught up. You are correct!! Oh my... definitely no vitamin E... it has been known to increase bleeding risks among other things. Its a good vitamin in small doses for normal people. We, unfortunately are not normal right now.  Vitamin D was the one that I was referring to in an earlier post. My levels are very low due to little sun exposure and other factors. I take 6000 IU daily (along with a calcium/magnesium/zinc to aid absorption) through the winter months. I will drop it back to about 2000 IU in the summer months. Most people can get normal levels by taking 1000 IU which is a safe amount. I also take a women's multi, a C and a L-lysine. I want to add an additional B-12 but I am waiting for the MO to say sure...

I did stop some supplements because my MO was not familiar with them and how they would react to the AC and T. They are Honopure and Pectesol C. My dear father is a 10yr prostate cancer survivor and does so much research on stuff. When I told him I had cancer he ran right over and gave me these supplements and said "TAKE THESE". I was given pamphlets and instructions and away I went. All the docs have been interested in these but, none have given me the ok to go back on them. So, maybe when the chemo is over. I did find my joints aching less when I took those supps... who knows.

Well, time to venture out with some friends for a change. Dinner and some shenannigans... oh boy!

Have a good night ladies!

NikkiLiz

Hey everyone-

Went for my Neulasta shot this morning and still hoping the aches stay at bay. I napped for 3 hours because thanks to the steroids I was up 3-7. I've been taking my zofran and no real nausea but I've eaten little things and pounding the fluids. I also took an alieve beforehand to be proactive.

Hope everyone else is well and I'm off for a lie down. I have never been much of a sleeper-looks like thats changing.



Ciao-nikki

Lauren15

WTF - A week out and I feel like I have the flu.  I have been feeling really good since Monday and today boom, I feel achey.  My back is killing me too.  when I walk I feel like i did those machines at the gym where you spread you legs and push them together, then do the machine pushing out.  I have not exercised, but that isn't new for me.  (I'm sort of a lazy cow, although I love my zumba classes).  I just sent DH out to buy a new thermometer.  Mine registers me at 96 - so not working. 

Skimommi - i wonder if my back pain is similar. 

gr8flmama21

Ciao ladies!  Have been down and out with the flu (of course I get the strain my flu shot didn't cover) since Monday night and am finally feeling better today. Figuring all the in & out of the hospital/dr's I've been doing it was inevitible.  Supposed to get my port Monday so we'll see how I'm feeling by then if they are going to do or not...dr. said we'll make the call Monday morning.  Not sure how that'll go with start of chemo Wednesday-have to call onco Monday and see how I am feeling. 
Been reading about the juicing-I bought a blender last weekend so I have the option of doing smoothies and such. 

Mandy-hoping you're feeling better. That's quite a port story! 

Sandra60

Ski girl 72 - can not find a ciao Bella's Facebook page - is there another name for it to search by it ?

ldcpt1

Hi Zorina!

Yes, we are definitely similar with diagnosis, surg, and treatment...glad to know the port site will get better, and really thankful to hear that you are feeling good after your first treatment. Let's pray that continues! How did you feel the day after chemo? As of now, I'm planning to go in to work. I will look for your posts, and it's so comforting to know that we all have each other to pull this out!



Other Ladies,

I also relied on ice several times daily after my lumpectomy and lymph node surg (REALLY helpful), and am continuing the same with this dreaded port site.

Lastly, I also was told by my MO that there seems to be that correlation noted above regarding nausea during pregnancy and after chemo, though he couldn't explain it. I'm hoping that holds true, as I felt great during both my boys' pregnancies.

JudyinNC

Sandra60, I'm having the same problem locating the group. I find MANY groups named ciao bella, but none of them seem to be ours. Anyone out there who can direct us - thanks!

Skigirl72

I think we who are in the group have to add you.  Judy and Sandra, I think I just added you. I guess it is a secret society, you only get in by someone that is already in... 

Skigirl72

Yay about the correlation with pregnancy sickness and nausea with chemo. I heard the same thing. I guess if you were not sick during pregnancy you have better chance of not having bad nausea with chemo... no idea why, but YAY!! I felt great through my pregnancy with my son.

Lauren15

I'm going to break the theory here.  I had no nausea at all for both my pregnancies, and I was pretty sick after my first chemo TX.  Sorry . . .

Skigirl72

damn... oh well, it was worth a shot. 

SherylB

Skigirl72,

Regarding the vitamin D, are you referring to D or D3? It has only been in the last few years that the medical profession has realized the importance of D3 and have started testing for it. I was tested in May 12 and my level was 15, I was placed on D3 5000 IU daily, when retested in 12/12 I was only 25, most want us >32. I added 1000 IU for total of 6000IU dailyl (as instructed by my MO). So ladies if you haven't been tested for D3 ask your doctor and Google it you will be amazed at what it is responsible for.

Another test that is being missed is Ferritin and Tsat. If your Hgb, and Hct are normal then the doctor thinks all is ok. When I went for my first MO appt. she tested my Ferritin and Tsat. My Hgb was good at 13.9 but Ferritin was 16 (normal varies from lab to lab but approximatley 15-200) even if Ferritin is within range the low end means that you may not have enough stores (ferritin is an iron storage) to make RBCs and anything else body needs. My Tsat was 11 (normal ~12-45). So today I went to the cancer clinic for 6 hours for an iron infusion. The have to do a test dose of 25 mg and then wait about 45 minutes to make sure you don't have a reaction (pre-med with Bendadryl and Decadron) then the rest of the infusion over 4 hours. Takes about 2-4 weeks to see an improvement. The biggest problem I had was the cost, I hadn't met but half my deductible so had to pay $399 for the infusion and may need more. I don't care as long as I can come up with the money if it helps. For years I have said that I was so tired (56 yo) was age, poor diet, lack of exercise etc, while all that is true my body didn't have the iron or the vit. D3 it needed to be balanced.

Don't be afraid to ask for the tests they are important. Didn't mean to sound so teacher like but if I didn't know this after >35 years in healthcare then many others don't either.

Hang tough, Sheryl

Anonymous

Skimommi~I get the sinus type headache. With the first AC a friend told me it was caused by the pre-chemo zophran, but someone on this thread mentioned it being from cytoxan.



I get a small IV bag of Emend, 3 zophran pills, and 3 decadron, before chemo. I haven't had to take anything for nausea at home except the decadron they have me take once on day 2 and twice on days 3 & 4.



Blessings

Paula

SherylB

Lauren, I posted almost the exact thing at about 5 am. I felt good Monday and Tuesday after hurting a lot on Saturday and Sunday. Wednesday evening my back started to hurt so bad!!!! The spine not kidney area. I could barely walk, sit, or stand, I had to be at the cancer center at 0830 for iron infusion and had a fever of 100.3. Took drugs, thank God I had some lortab left and 800 ibuprofen and was able to shower about an hour later and the pain finally eased up around 1000. I had the nurse give me a warm blanket and folded it up into the small of my back. I asked the MO if the Neulasta came back a few days after given and kicked ass again, she said no it was just the inflammation. While I disagree, (didn't say anything to her) you and I had chemo same day, neulasta same day and almost the same time frame for the pain from hell to come back. Makes me think the neulasta hits, meditates for a bit, then hits again. Who knows??

I feel ok tonight thank goodness, but don't have any more pain meds so hope this doesn't happen next time. I am taking the Claritin for 8 days now, take 800mg of Ibuprofen in am (have MO's permission) and drinking a gallon of water a day plus other liquids, (I slosh when I walk). So don't know of anything else I can do. If this hits me like this next time I am dragging my moaning, groaning ass to the ED, let them deal with me LOL.

I have to tell you I have been in healthcare >35 years and it really pisses me off that doctors think something isn't so because it doesn't state it exactly in the research study (felt this way before I was the patient too). No one seems to want to listen to the patient anymore if they ever did. Enough of ranting.

Hang tough, Sheryl

PS going to the dentist in am for crown, broke a tooth, hope don't need a root canal because I won't do that in the middle of chemo and being neutropenic. It would have to be an emergency. Tooth doesn't hurt so hopefully just a crown.

Later, S

Anonymous

Sheryl, I love the "I slosh when I walk" comment.

Colleenkelly

Nikki, glad your first treatment went well. I was trying to.find the post of where u said u got your wigs and what brand but I can't find it.can u please give me the info again? thx,Colleen

gd2shuz

Hi all. First let me ask,  How do I create the info I see on everyone's posts, below the horizontal line, with their dx and tx etc? I tried to find it but couldn't. 

I went for my first post-op visit today with my surgeon and he removed all my staples, but drains will have to stay in til next visit next week because they are still draining pretty well.  Thank you to whoever's idea it was to use a fanny pack to hold the J-P's...it's so much more comfortable than pinning them to a t-shirt or a scarf or whatever. 

Got my pathology reports today. . My lymph nodes were negative so they only took two sentinal nodes from each axilla.  

The right breast is Invasive Intraductal Adenoid Cystic Carcinoma Stage 2a in the right breast,Triple Negative, and I will be scheduling an appt with a medical oncologist, hopefully can see him the same day I go for my next post surgical f/u since the hospital is quite a distance from where I live.   DCIS in the left, no tumor was actually found...surgeon said it was so small that it was actually removed when they did the biopsy that found it. 

I have no idea what type of chemo is used for the type of tumor they found, so one more week of waiting, and learning from all your posts. I will ask the MO lots of questions, and then find a MO closer to my home because I do not want to drive 75 miles round trip alone every time I need a treatment.  

I am nervous about the SE's.  I do not want to miss too much work, I need the job, it's my only source of insurance! Which I am sure is a common situation with a lot of you.  Anyway, will cross one bridge at a time.  I worry though because I am a nurse and work in a clinic where we see lots of coughing and sneezing people and don't want to get sick on top of sick.

Hope you all have a good day tomorrow. Will be joining you at the bar shortly.

gd2shuz

I just sent a friend request to Debbir Inzana on Facebook.  Hope I did it right! I didn't actually look for ciao bellas.

SherylB

gd2shuz.

Go to the top of the page and see "My Profile" Click and then you have the categories of surgery, treatment etc. Add what you can now and you can go back and add more later or remove.

Welcome aboard,

Sheryl

Sandra60

Gd2shuz - you've come to the right place for support ! Sorry u have had to go thorough this but u are taking the right steps and with the excellent chemo treatments you will be on yur way to kicking it !! Regarding work - if u time your treatments for a Thursday you might be able to return to work on the following Monday but it just depends on side effects . Keep us posted on our schedule and we will all pipe in with our recommendations based on our experiences .

Big hugs and thinking good thoughts for you !



Sandy

gd2shuz

Thank you Sandra60!

gd2shuz

Thank you SherylB.

EmmaL

new members joinning in...

i started my chemo this wednesday. so far the side effect hasnt hit me very much yet. but i do have a funny feeling of my stomach. sooooo many people around me mentioned the 'horible' side effect and it is for sure in my mind now. so i am a little confused whether that is 'real' feeling or simple from my imagination.

anyway, good luck to my self and to all of us! 

Anonymous

Lauren~I had waves of nausea throughout the day during both my pregnancies, but I've had NO nausea with chemo. So, I guess I break that theory too.



Blessings

Paula

Zorina

Breathe in, Breathe Out is a Jimmy Buffet song written about Katrina, but I think it has a lot of relevance to our 'hurricane' so check it out if you need a mantra.

ldcpt - The port was rough for a little while, but the drainage tube was the most annoying and uncomfortable thing I have had to deal with yet.  

The day after treatment, I was groggy,  tired and a little quesy.  I wasn't bed-ridden, but I took a lot of naps.  Some folks get a big steroid rush which sends them into cleaning frenzies.  Not me..but I was taking fewer steroids and had been given a bunch of benedryl because I had a rash develop from Cytox. I didn't have trouble sleeping or any pain. Acid Reflux and constipation were an issue, though.  My only other significant issue was cognitive...I felt dumber than a blonde!

While your experience will be different, it is very possible your SEs will be limited and at least tolerable.  I had a fairly significant issue three days later because I was severly dehydrated,  so drink, drink,  and if you cannot drink enough, call the MO.  I went in a couple of times and just let them hook me up to an IV for fluids.  I think the Adriamyacin is the culprit.

gd2shuz - They cannot fire you for cancer. If your employer has more than (I think) 25 employees, they fall under the jurisdication of federal laws for Family Medical Leave Act (FMLA).  This grants you leave for medical reasons and they are required to offer you a comparable job with comparable pay when you return. I think it also includes continuing the insurance during your absence.  Talk to your HR department.  Check to see if you have Short-term disability coverage with your employer, too.  That would allow you some percentage of your salary while on leave.  if your employer is small, there are other rules, but I just don't know them.  Just try to work with your employer and let them tell you what your options are.

Re: Nausea - I was never pregnant, but my MO did ask if I had problems with motion sickness.  I had a dreadful time as a kid, but it is much better.  Still, she said that can be an indicator that I would have nausea issues.  I did not.  I stopped taking anti-nausea meds three days after chemo.

I am off to AC#2  this morning, so hopefully, my luck prevails.

Anonymous

Zorina~I'm also off to chemo this morning...AC #3. I pray we both stay hydrated this time around and have NO SEs!



I also got motion sickness really bad as a kid. I think a big part of that is, you ride in the back seat. If you look out the side window, everything is moving by you really fast. That's what made us nauseous. To this day, I'm fine looking out the front window, but if I start looking to my side, I get nauseous really fast.



Blessings

Paula

Anonymous

EmmaL and gd2shuz, Ciao Bellas! That "feeling" you have EmmaL is probably the real deal. My SE's were the same. It wasn't bad enough that I felt horrible so, like you, I thought maybe I was just imagining it. It is real, and we are just lucky it isn't worse. Gd2shuz I am also working through chemo. I have only been to happy hour once, and so far haven't even missed a full day. But, I am lucky enough to have the ability to telework some days. Here is to hoping that we can continue with somewhat of a normal routine.

Zorina, Paula - have a shot for me.  Here's to hoping you don't have a hang over this weekend. I always get motion sick in vehicles, even to this day. That worried me a lot thinking that was a sign that the nausea from chemo would kick my @ss.

Bryona

skimommi, I hope you've managed to get some sleep. I'm way behind on mine--I was up on and off all night. I should have been in bed hours ago, but I feel like I missed out on most of my day in a chemo fog. Pretty silly of me, but there you go. I was also thinking about what you said about overeating. I think it's natural to gain weight. We've spend weeks (or more!) preparing not to be able to eat, so the willpower is low and the whole sense of normalcy around eating is ruined. I'm hoping that after a week or two of getting used to this, we'll be able to get back to something more like healthy and normal. Fingers crossed!

Sheryl, I hate that you're in pain, but I love that you've found bright sides in this marvelous forum.

Paula, my nurse told me in advance that the sinus headache could happen with Cytoxan. In fact, she offered to just start it on the slow drip to begin with, but everything had been going fine up to that point, I figured we might as well try for the faster drip. The good news is my headache was gone by morning.

Nicole, thanks for the suggestion about Sudafed for the Cytoxatini headache. I'll definitely give that a try.

IFight, ldcpt, and watta ciao belle! That's our groups way of saying, "We don't want to say welcome because we're sad you've had to find this place, but if you need this place, we're happy you've found us." As for the port, ldcpt,I found mine uncomfortable for the first week after I got it in, but now I hardly notice it at all. Hang in there!

ziffy, glad to hear things are going so smoothlye for you. One down!

gr8fulmama, I'm sorry to hear about the flu. We've heard of port placements the day of the first chemo treatment, so two days from that perspective is an age! And for me, the port itself was never painful, just the tiny top incision, which they'll leave alone during tx. Anyway, you should be able to put on lidocaine (Emla) cream to make it numb on the surface.

gd2shuz, did you get your treatment information sorted out? Just make sure to mark things public if you want them shared at the bottom of your posts.

Emma, ciao bella! I'm glad you've found your way here. It sounds like you and I started chemo on the same day, along with NikkiLiz and Nance. I know what you mean about that bad feeling. I've been using Ativan for nausea instead of Zofran or Compazine, because that way I know it'll help with the nervousness if that's the real cause of the SE...

As for me, I spent most of last night and today in a bit of a fog. It felt like my legs were made of lead, and I was definitely struggling with food. It's all cleared up no, although I notice my typing fingers have become dislexic. How awkward. On the bright side, I did get out for a prebald haircut. I updated my avatar to show you all; please note the uncany resemblance to the crack monkey....

Good luck today, Zorina and Paula! Bottoms up!

Anonymous

Bryona~I love the new pic! I'm taking my sudafed with me today, just to run it by the onc. Unless she has a really good reason why I shouldn't take it, I'm taking it before treatment starts.



Blessings to all my Sisters

Paula