Starting chemo Thursday, May 31 - June Group?

DorisMarie - interesting - maybe my sense of smell is heightened too.

Ellebee- I too am so sorry about your kitty. 

Simplyblessed- Thank you for your words on not forgetting about our own grieving.  Women always are givers and we forget to give to ourselves even in grieving.

Pam- I'm so happy that you are enjoying your scarfs. Keep it up!! People are very sweet. Good luck tomorrow!!

Marcia- It is weird, my right side where they took out my nodes, have no sweat or smell but the left side is on overload. Nothing works. It seems to pour out chemo smell.  If you figure out something that works let me know.

Everyone have a wonderful day!!!

Maria1111:  Let me e the first to tell you... Billiemae has the same complaint pretty much from day one! And now as an added bonus she also sweats allot on her head as well, now that we've started to shave her head! I guess it's the chemo making it's way out in the only places it can find?? We had wondered if it was related to the lyphnodes being removed because her complaint is primarilly on that side? Not really sure aout that though.

  Have a great day,

 Steve 

Hi Pam- You have a great and positive attitude. I love it!!! The chia pet made me laugh. Ive gotten use to my bald head. It really didn't bother me like I thought it would.  The first time I heard that I might have cancer, I thought about losing my hair.  Funny how we learn more and more about are selves when we are actually going though the situation.  We are stronger than we know. I'm having a good day. Ive been cleaning my house today also.  Will you have to do chemo again after your surgery?  I sure hope not, how does that work?

Pam-  Your attitude is terrific.  Many years ago I read  "Be kind for everyone you meet is fighting a hard battle" Plato;   similar is " Be especially kind to all you meet, each of us carries a burden that others can't see."   Well, now I guess some of our burdens will be pretty obvious.... I even had that for an email signature.   

Doris  Glad your day went well, taking positive action on the hair thing.

Someone posted a few days ago that their child was in a swim meet, actually you've mentioned it a couple of times.  I am an old, swim team Mom..... spent so many days at a muggy, indoor swim meet.  Most of ours are indoors in Oregon.  Give me an update, age, fav. stroke, etc. etc.  We always felt swimming was such character building sport, great families at those meets.  Long, long days and drives.

Today is day 2 cycle 2.  Laying on couch all day, totally beat.  I did ask for a copy of my first blood analysis and then yesterdays, i want to keep an eye on it myself... gives me more control.  I had the neulasta shot today, so glad I can get it at the hospita ten miles away as we wouldn't drive 200 miles again today, would have to stay overnight.  I was shocked my white count was actually up from pre chemo count.  Read up on nutrition etc.  we need red meat, green leafy vegs, egg yolks nuts.... going to work on that. I need to look for some charts, I think some of you mentioned.  Today is my sweetie's 71 birthday.

I pray for everyone on this list every night.  Bless you all,  Stephanie 

Good Luck to those having chemo this week!!! You can do this!!!! 

FYI:  If you are getting the Neulasta shot, please try the regular 24 hour Claritin for 7 days beginning the day you receive the Neulasta shot.  It may help the bone pain from the shot.  There is no guarantees that it works for everyone.  There is an ongoing clinical trial studying the effects of Claritin for the bone pain induced the the drug in Neulasta.

Hi Everybody,

I had my 2nd chemo Monday.  It went well, only a little chemo brain that night.  Was going to go to the mall to Sephora to check on the eyebrow things, but then I thought of Steve and Billiemae's fever story.  Decided not to chance it.  The eyebrows can wait until the weekend!  Thanks Steve & Billiemae.

Ellebee -- so sorry to hear about your cat.  I know pets are just like family members.  Hugs.

Kimmie & Steelersluver -- I agree....get the cream for the port.  The nurse accessed mine without the cream, and it was quick, but NOT fun.

Pamelahope -- good luck on your chemo tomorrow.  This is #3 right?  One more AC to go!  This phase is almost over!!

Melrosemelrose -- thanks for all of the chemo info about icing and the nails.  I noticed dark nailbeds and dark cuticles after my second infusion.  I didn't know that would happen with AC.  Just have to figure out how I'm going to chew on ice and also have both hands in ice.....maybe it's the cytoxan?  Black, gross nails....yuck!  I want to wear gloves.  My hands look dirty and I hate dirty hands!

Marcia1111 -- I'll be on the lookout for that body odor.  I haven't noticed that yet and no one's told me, but I'd rather be safe than sorry.

Has anyone NOT gotten bone pain from the Neulasta shot?  It worries me, because I've heard that it's a common SE.  Maybe because I take 2 extra-strength tylenol to help me sleep?  But, wouldn't I have the pain during the day?  Guess cancer does some strange things to the mind.  I'm paranoid about NOT having the pain.  I used to take Claritin for allergies and it GAVE me leg pain.  

Also, has anyone not had a PET or CT scan?  Seems as if everyone has had one and the BS said they don't order them if you're asymptomatic.  Has anyone else heard that?

I worked up until now, but I feel as if I'm losing energy and am down for the count.  Hope I can make it to work Thursday and Friday, which will be the start of my challenging days.  Have to make my FMLA hours stretch.  Sorry to be so winded, but I don't get on here much.

God Bless all of you wonderful people.  May things get better for each and every one of you....love.  

Keep moving: It was never my intention to scare anyone from living a free life, only to warn anyone on chemo that any minor infection is always to be taken quite seriously. Never ignore syptoms of mild illness, especially a fever! If your WBC count is low it's possibly deadly. But if your feeling well enough, and show no signs of danger, enjoy your normal activities! This crap already robs you so of so much, that a chance to get out while  your having a good day is truly a blessing...so enjoy it!!!

Stephanie: I was unable to attend her scans, and hate it so much! It was a terrible day for her. For some reason I still fail to understand, she was scheduled to have her scans 3 days after having her gallbladder removed! Really...that's what you would recomend?!? She was struggling to keep water down and you expected that she could keep that chaulk crap down? No to mention that violent vommiting isn't recomended for anyone fresh off of the operating table!! And puke she did...twice on the exray tech. and a number of times leaving the lab heading home...poor girl! She to was diagnosed negative...the surgery was a success. All of the remaining treatments are a precaution. We were told by her specialist that the numbers are staggering, if you opt out of the regiment and rads more often then she is willing to wager it can spread to other organs and be potentailly fatal. Infact we have met a few while waitng that were cured 4 or 5 years ago and didn't do any kind of chemo or rads and now will be lucky to survive! I realize they knew so much less even 4 or 5 years ago that I am hopeful this is the ticket! Infact I never put in our profile that Billiemae was diagnosed and treated almost 20yrs ago ( 2 rads) and now we are picking up the pieces...if it were I, I'd be willing to try anything they suggest! I thank God Billiemae see's it that way as well!!!

  Keep up the fight,

Steve    

KeepMoving: I asked my onco about PET imaging specifically since I read it is commonly ordered for people who are doing chemo before surgery. He told me that the MRI and other tests all suggest that I am stage 2 and that there is no lymph node involvement. Therefore, CT or PET isn't really warranted. He said he thought if there was a chance that I have significant lymph involvement, he would order the tests. Also, my friend (who is nearly 2 yrs cancer-free) said that the PET scan was the only test her insurance would not cover, saying that based on her diagnosis (stage 2 DCIS), it was unecessary. PET imaging is a whopper of a bill, so I guess they have to be discriminating in terms of who needs them. They did some other imaging technique using radioactive dye to identify suspicious lymph nodes prior to her surgery. So maybe this means good news for you if they have not ordered them? But go ahead and ask about it in your next appt. Doc's should be open to questions and should have no trouble explaining their thought process. 

Pam: I do have pretty thick hair. The strands themselves are medium thickness, but there are a lot of them. Maybe you're right, and it will be more gradual. But evey time I run my hand through, I have 5 strand in my hand. I just want to have hair for the next couple weeks. My anniversary is this weekend, and my birthday next weekend. We have a nice date planned for my birthday, and I would like hair for it. But I am not going to stress over it (at least try). I will just buy a new scarf or something. And you have #3 today, right? You are nearly there girl! And I have to say, you are getting stronger and stronger! That comes through loud and clear in your posts!

I too have learned something through this experience (one of many lessons, I am sure). I have always been a good coper with stress. I was raised in a chaotic environment, so coping with stress is just natural. But last year, I had a very large stressor that I had difficulty coping with. Well anyway, I wasn't myself. And my husband completely came unraveled. He started having panic attacks (not his fault, of course) and was pretty emotionally unavailable. He sort of shut down. This was a really rough patch for us because I felt like he didn't have my back and was ignoring my emotional needs. But I have since interpreted this as he can't tolerate seeing me in pain, or being less than my usual strong self. Apparently I am the glue around here . Well, to my delight he has been so wonderful in this cancer process so far. He has not had any significant anxiety (although I noticed he got his Ativan refilled), and he has been very involved in the process. He has been exceptionally affecionate and loving, and patient. So my fears that when faced with a crisis he would crumble have been proven false. But of course, i am handling this situation differently, so that probably helps him feel reassured and confident. Over the last 6 months, we have worked our way out of that rough patch and had been doing better than we have in YEARS when cancer came-a-knocking, and this darned cancer seems to actually be drawing us even closer! So I guess I can thank cancer for that? Maybe I won't go that far. Ha!

So I have heard from one person that you have to use the brand-name Claritin instead of a generic substitute when combating Nelulasta side effects? Have others heard this as well? Why in the heck would this be? I just don't get it. They should be identical in terms of their chemical structure. Anyone try the generic and have good results. Of course, we have the generic on hand always (for husbands allergies). Just trying to cut costs where I can. All these copays/deductibles and prescriptions/OTC meds are adding up.

Good luck to anyone going in the BGC today! Hugs to you all!

ElleBee 

all - if you take Claritin prior to your Neulasta, take it about an hour before the injection, then continue every 24 hours for several days.  You will most likely have had the most pain after the first injection because this is the first time your bone marrow will have expanded to produce more white cells.  Subsequent injections will not cause as much expansion, so less pain.  Claritin is thought to relieve pain because the antihistamine eases the edema produced by the marrow expansion.

When you are receiving chemo the nadir (low point) for WBC is usually 7-10 days after your infusion.  That is the point at which you are most vulnerable to opportunistic infection.  Right after chemo is probably when your WBC are in pretty good shape.  I had TCH every 3 weeks so I usually tried to avoid crowds right at the half way point.  I was fortunate to have weekly labs so I was always in touch with where my WBC count was.  There is no food or supplementation that really helps your white count - that is why Neulasta/Neupogen is given.

On the red cell count - diet is more of a factor.  Red meat, other protein and leafy greens, like spinach, can affect your red count.  The thing you actually need to watch is not the RBC number, but the hemoglobin number.  That is the mechanism in your blood that oxygenates your muscles.  Your hemoglobin number is what your docs will base the need for a blood transfusion on, not your RBC.  Most oncologists will transfuse at a hemoglobin of 8 or lower, but some will at a higher number if you are symptomatic - that would be lethargy, confusion, shortness of breath, dizziness, confusion.  Also, your platelet count will jump all over the place but don't be too alarmed by that.  Platelets are very fragile and short-lived, and the number can be different on any given day.  If they check your platelets on the day of chemo and they are too low, they will not infuse you.  Platelets control your body's ability to clot and if they are too low it can be too dangerous to give you chemo.  Most oncs will order a platelet transfusion (easy 20 minute infusion) or delay chemo. There really are not any foods that can improve your platelet count.

On scans - this is possibly one of the most frustrating aspects of diagnosis and follow up for breast cancer patients.  Some docs want baseline scans at diagnosis, especially if you have positive nodes.  Others feel for early stage and node negative that scans are not necessary.  Others only scan if there are symptoms because scans cannot see anything that is too small!  Ladies that are finished with treatment are still asking scan questions because there does not seem to be consensus among docs as to what is standard regarding this.  I was node positive and had a pre-chemo scan and a post-chemo scan.  My onc also ordered a post-Herceptin scan which I have not done yet because I had exchange surgery and it would have obscured the scan with surgical uptake.

Glad you are all hanging in!

No problem - glad to help!  I used to work in Transfusion Services in the hospital I had my BMX/TE replacement/exchange in, so always like to help with blood and count related concerns!  You may see your hemoglobin kind of stairstep in a downward trend throughout chemo.  It will drop, then come up a bit, then drop lower.  You may experience muscle burning (especially in the largest muscles like the thigh) at the end of chemo - this is pretty normal - it is that lack of oxygenation from the lowered hemoglobin, and you may find you are more easily tired from a physical task, like walking a distance or climbing stairs.  As long as your hemoglobin does not drop below 8 just expect this to happen.  It will resolve, usually within 6 weeks from the end of chemo.  If you can exercise, or at least walk, during chemo this will help.  Keep consuming the protein-rich foods during the time you are feeling decent.  I loaded up on steak, burgers, eggs and spinach - especially toward the end on tx 4, 5 & 6. 

Pretty much it is brightly colored veggies - particularly sun-dried tomatoes, apricots, parsley, olives, raisins, peas, potatoes, any greens (not sure if those are a problem for kidney stones), brussel sprouts, asparagus, chickpeas (garbanzo beans), artichokes, and iron fortified grains or cereals.

Yay!