Starting Chemo May 2008

My neupogen story (just to add to the fun) - a visiting nurse came to my home the day after my first treatment to show me how to do the injection.  Man oh man, overcoming that aversion to piercing one's skin with a sharp needle was HARD!  But I did it, finally, and looked to the nurse for approval.

Her reaction was a patient, "OK, now get the needle ALL the way in."

I gulped, and did it, and the 19 injections since then have gone much easier.  The hardest part for me is filling the damn syringe.  (I get my neupogen in vials, rather than pre-loaded.)

On the bone pain - not everyone gets this.  Mine has been minimal, a few twinges on my last two days, and that's it.  I was given a little more leeway on the timing of the injections than Susan, but advised to keep it within +/- 2 hours of 24 hrs from the last shot.  (I do aim for roughly the same time each day.)

Linda

KKing - my onco only gives the Neulasta IF the blood counts justify the need.  Perhaps you could ask for reconsideration.  Have them check your CBC one week after chemo and/or if you show signs of illness.  My white count dropped to 2.1, low but not dangerously so.  It came back up to 5.2 on it's own.  it was therefore decided that CBC's would not be checked inbetween treatments unless I developed mouth sores or fevers or other signs of illness.

$550 is a lot of money if you don't really need the med.

It can't hurt to talk to the office.  This is YOUR treatment.

Robin

Hi kking,

I am on the FEC-D regime also living in canada, had 1 tx so far. just last night they put me on neupogen for low blood counts, wasn't feeling well so got them checked, otherwise they only check the counts the day before chemo.  I will get 5 shots this time around and they said it would be around $1000. I have private coverage that will cover half of it , but my pharmacist said to register with FairPharmacare and they might help out with more. So maybe check into pharmacare and see it that is an option for you.

good luck !

Thanks for all your advice.  I will ask about the neupogen.  I did call the Onc office and the nurse thought with my first 3 treatments I may not need it.. she suggested I talk to them when I come to the office which will be the day before my treatment... which wont give me time to get it if I need it... and also I am a bit scared if I do really need it..  Angelsaboveus, I will check out the FairPharmacare.  Will let you know the outcome.

Karen

Thursday at 9:30 am.  That sounds like a fantastic day to start chemo.

I wanted to find you a good quotation about Thursdays to back this up. It took me a couple minutes to remember the name of the good quotation website [Thought process: It starts with "B." It is related to Moby Dick somehow.  Aha! "Bartleby"! But who wrote Bartleby & Moby Dick? 10 minutes of mulling this over, I finally arrive at Melville.  I refuse to believe in chemo brain.  But moments like these . . .]

Anyway, Cristine, I'm sorry but quotes about Thursday are hard to come by. The best I could find was:

[Richard] Wagner was a monster. He was anti-Semitic on Mondays and vegetarian on Tuesdays. On Wednesday he was in favor of annexing Newfoundland, Thursday he wanted to sink Venice and Friday he wanted to blow up the pope. (Tony Palmer writing about a 9 hour bio film on Richard Wagner, German composer, 1813-1883, for TV Guide.)

You deserve better than this for all the waiting you've done!   Then again, somehow I can relate to Wagner's mood swings, if not his sentiments.

Take good care. 

Well, I am back.  The weekend was so rough I just stayed on the sofa.  I then have worked full time all week and have come home at night and just sat.  I did not have the energy to pick up the laptop.  but now (day 10 after 1tx) I am almost normal (if there is ever such a concept again).  My main side effects that seem a little different have been possible infections that might have already had that are now exaggerated.  It seems that this chemo may show up some health problems I have had for the last year and was ignoring (intestinal infection from previous mission trip).  I had just thought it was my sensitive stomach. 

Chrsitine - I am scheduled for 2tx on Wednesday so we will have te down weekend together.  I know you have had a hard time waiting.  I thought mine was bad since I did surgery in mid March and just not starting chemo.

Is this the second time for breast cancer for anyone?  This was my second lumpectomy but 5 years ago I followed the surgeon's advice and did not do radiation.  This time I had to make the decision of chemo or not.  I was in the "we have no research for your particular case" so it is your decision.  My surgeon said no chemo, my first onc said, my decision.  My nephew is an onc in another town so I asked him as well.  He also consulted with with an onc at another renowned hospital and they all confirmed chemo was absolutely needed.  So the decision and waiting was really hard.  It is good to be going down the road now.  I had second thoughts this past weekend when it was so bad thinking "why did I pick the safest route instead of the easiest like I did last time." 

But, this site has been great in helping me make the decision knowing that I can make it though and in knowing there are others along me.

Everyone have a "as good as possible" weekend. 

Otter:  what is YMMV?

and I love your descriptions of your GI issues.  Sure am glad the worms didn't visit me.  Sorry about your feet.  Hope the Aquaphor helps. (Think I read about that on another thread).

Wishing you all a peaceful weekend

rockthebald - there was a news segment on tv here the other night about crest pro health staining people's teeth.  I don't remember what else it said., but it caught my attention since dd uses it.

Hi. Like some of you Thursdays are my day as well. The first tx went okay...just long. Went to work yesterday....fuzzy but okay. I could definitely feel energy drops....shaky at time. I did get my hair cut last night. At my shoulders and now it is at my chin level. So short...hasn't been this short for about 22 years....but baby it's getting shorter huh? I did the 3000 shot last night which was fine but a little worrisome. I was so busy trying to read the direction and do the shot it was kind of crazy. I thought I was going to mess it up!

I can't remember who was asking about insomnia...but I take Benadryl at night. It knocks me out and 2 tablets are better than 1 unless I am exhausted.

Otter, thanks for the graph. It makes sense. My rbc was at 10.9 and I know they prefer 10 at the lowest (at least I think that's right). I have always been on the low side, and so I am a bit worried about it. It sounds like I will be feeling that more around day 9 or 10 right?

Have a good weekend everyone. Stay strong.....it might actually be in the 80s here in IL.....since we have been in the 50s. Maybe we are going to catch a break with the warmer weather this weekend.

rockthebald - Thanks for asking...I am doing good.  I certainly don't have sleep deprivation.  I napped much of yesterday afternoon, into the evening then all night.  I hate being so tired but it will pass...hopefully today.  I hope the Benedryl works for you and you are able to get some much needed rest. Certainly glad to hear that you are in good spirits!

I'm not happy to hear about this Crest Pro Health story.  I began using this last week....now what to do?  The last thing we ladies need is brown stains on our teeth on top of everything else!

I think today is the day I start losing my hair...day 17 from first treatment.  Had a few strands in my fingers when I combed through this morning.  I held on to it longer than I thought I would.

I feel good today.  I hope to have more energy and am aiming to go see Indiana Jones tomorrow with my family.  They are all chomping at the bit to see it.

I hope everyone has a relaxing and s/e free weekend.

~Adrienne

Hi, all--

About those brown teeth...

One thing I thought of is that Crest uses stannous fluoride in some (not all) of their formulations of toothpaste.  The label on one tube of Crest that we have says, "Products containing stannous fluoride may produce surface staining of the teeth.  Adequate toothbrushing may prevent these stains which are not harmful or permanent and may be removed by your dentist."

Other brands of toothpaste (e.g., Colgate), and even some formulations of Crest, contain sodium fluoride and the labels do not have that warning.

The same thing is true for fluoride (anti-cavity) mouth rinses.  Some of them contain stannous fluoride, while others contain sodium fluoride.  So that might make a difference in staining of teeth by the anti-cavity rinses.

As for the rinses that are supposed to fight gingivitis, I don't know if they contain fluoride at all.  The Crest Pro-Health rinse does not, according to their website.  The active ingredient in Crest Pro-Health rinse is "0.07% Cetylpyridinium chloride (CPC)."

The Crest website (http://www.crest.com/prohealth/mouthwashFAQ.jsp) says this about brown staining with Pro-Health mouth rinse:

"Does Crest Pro-Health Rinse stain teeth brown?
Like all mouthwashes that effectively fight plaque and gingivitis, Crest Pro-Health Rinse can contribute to temporary, surface-level brown tooth discoloration, which is reported by a small percentage of individuals.

• Tooth discoloration could actually be one indication, in some people, that the product is working: after the rinse kills germs in your mouth, the dead germs can collect on the tooth surface and create the appearance of a brown stain.
• Tooth discoloration could be exaggerated by many other factors, such as existing tartar on teeth, consumption of colored beverages like coffee, tea and/or red wine, or tobacco use.
• Brown tooth discoloration from use of mouthwashes that effectively fight plaque and gingivitis is not harmful. It is reversible - and largely preventable - through options like brushing with a power toothbrush and tartar-control/whitening toothpaste, flossing, and visiting the dentist regularly."

Here is a really interesting website that discusses all the pro's and con's of various mouthwash formulations:

http://www.dentalgentlecare.com/mouthrinses.htm

If you go there, be sure to scroll all the way through it because they've added some new information at the bottom about the anti-microbial (anti-gingivitis) rinses.  Note that the authors advise against using mouthwashes that contain alcohol.  They point out that Listerine mouthwash, even "Listerine Tooth Defense Anticavity Fluoride Rinse," contains more than 20% alcohol.  That's really bad for your mouth.

That's more than anyone ever wanted to know about mouth rinses I'm sure.

otter 

Jule, the graph is for wbc (neutrophils, specifically).  The story would be very different for rbc, because they don't die off as fast of old age.  The numbers you've quoted are probably for hemoglobin concentration, which is the important factor for oxygenation of tissues.  When our hemoglobin drops, we can't take up or use oxygen as effectively.  I don't know what the time curve looks like for rbc's or hemoglobin after chemo.  Neulasta does nothing to help with rbc's.

SharonF, I am getting my Neulasta shot on the same day as chemo too.  I was worried about that at first, since all the onco guidelines say to give it 24 hrs later. Then I found some research reports that said it works as well on the day of, as it does on the day after.  The studies were really small and there were a few contradictory ones.  The place where I go for tx's contributed to one of the studies showing that Neulasta can be given on the same day.  They told me (when I asked) that it's easier on their patients, most of whom have to drive long distances to get there.  Also, insurance reimbursement is simplified.

hi everyone,

Had my 2nd nuepogen shot last night, and the pain set in yesterday, it was a strange thing, when i was standing up didn't feel a thing but when i sat down i had this wierd throbbing sensation from the waist up after about 10 minutes it would subside, and would happen again if i changed positions, did anyone else experience this ? Right now it feels much better, I hope that means its just doing what it's supposed to do.

Got an appt. at the wig shop on Tuesday , dont know if i will have anything left to show her the colour of my hair, as it is like fall when the trees shed their leaves. I might have to get things cut off very soon here.

Cristine i am a Thursday person too, i go in at 9:00 this thursday for my 2nd tx.

I hope everyone has a wonderfull weekend as I know it is a holiday for most of you, relax and enjoy!

Otter, That is precisely the amount of info that I was seeking about mouth rinses. I had my teeth cleaned 3 weeks ago, haven't drank, smoked, etc. since but was starting to look like I'd picked up a tobacco chewing habit! Good to know it should be reversible. (Crest is lying.  Check out product reviews at Amazon.com.) Crest Pro-Health has now made my bathroom drain "minty fresh."  I have complained to the FDA and will never use a Crest product again. 

Becky, I updated the "Tips for Chemo" and "Pre-Chemo Shopping List" last night. You should find them both under the "Tips for Getting Through Chemotherapy Thread" but if you have any trouble, let me know and I will send them to you!  I'm glad you found us.  This is a wonderful group of women who helps each other over the rough spots.  We get each other through this.

My hair comes out easily if I gently pull it. I thought I was ready, with the wig, the skullcaps, the game face.

I realized that the problem is that I am "frozen" for the first time since I found the lump in January, not sure what my plan is.  Unlike surgeries and appointments, hair loss cannot be scheduled or timed so that a friend is around.

Then I got tired of myself. I called my friend, the first friend I made in New York. We always celebrate our birthdays together and had planned to go for a hike over the holiday weekend (even though our birthdays aren't for another week).  The weather should be gorgeous!

We will go on our hike with her wonderful high-spirited aeredale.  At some point during the day, I imagine she will cut my hair very very short or help me deal with the hair falling out. I hope I can hang onto a fringe but this hair falling out everywhere. . . . it is just doing a number on me. It is mattering too much for the wrong reasons.

Angels, Sharon, my swimming pool/bar buddy Adrienne and everyone: Thinking of all of us, and am comforted.