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I Finally got this chemo party started

Annabelle41415's picture
Annabelle41415
Posts: 6550
Joined: Feb 2009

Woohoo I finally got to get my chemo started today. I took that Neulasta shot Monday and Tuesday and my WBC went from Monday 1.8 to today 14.3 (normal is 3.8-10.6) Neutrophil from .66 to 12.30 (normal is 1.40-7) so two days worth of shots did it for me. Instead of the 10 day continuous shot they said I only need to do the five. Platelet count went down from 196 to 183 but that is still normal. My bones hurt so bad from that shot that I'm on tylenol all day. Even my skull hurt. I woke up last night with like a brain freeze and it scared me because they didn't tell me that this is pretty normal. Wish they would tell you things like that so you know what to expect.

Went to see a new oncologist today. She was very brief with me but she was working me in between appointments so at least I got all my questions answered. She would not lower my dosage and I don't agree with her response at all because my regular oncologist said she would if I was delayed due to counts. This oncologist said they don't reduce someone that they are doing mop up chemo for only those that have had their cancer spread and need to take it for a long period of time. How can two people in the same office have such different views.

Hope all of you that have been taking chemo are doing good. It just seems to be knocking me down longer and longer each time.

Hugs!
Kim

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Kim

I'm glad the Neulasta worked for you - I took one shot of that and had a 5 day/24 hour headache that would not go away and I bombed away on advil/tylenol, but nothing worked. After a week it went away. I told the doc to forget about that one for me - never again.

Platelets are good, but we'll have to watch as treatment continues.

Recovery between treatments does increase so you are seeing that too.

I'm happy for you, glad all is going well...so much want your story to be different than mine and hope you continue to do well.

-Craig

Annabelle41415's picture
Annabelle41415
Posts: 6550
Joined: Feb 2009

Thank you Craig. I do agree with the headache though. I told my husband I don't think I could do 10 days of this. I think I am on Neulasta but it is the one that you are to take days worth of it isn't the shot you only get once. I was thinking it was only two shots and my body hurts - yikes. But I'm glad it helped.

Kim

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Kim- so your initial understanding from onco #1 was if counts were low (WBC, platlets) that they would reduce chemo, so hopefully you could still get it with low counts? And this one doc #2 said they don't reduce due to counts, only do that for longer term patients? right?

I never had my chemo reduced due to low counts- was hospitalized after treatment #1 due to blood infection and my WBC was in the gutter so treatment number 2 was postponed and I like you was given shots to build counts. (BTW, I only had to do that one time, never had an issue with it again). My chemo was never reduced due to counts. However it was reduced after treatment #6, I was in the hospital for a week then due to mouth thrush and mouth sores (ha, that sounds so benign right now, unfortunately it wasn't so then). And then oxil was omitted after treatment #8 and another hospitalization for a week due to dehydration and mouth sores. I was told then that I had reached the toxic level on oxil- and most people begin to reach it between treatment 8-10.

I like you was frustrated with inconsistent answers, or half-complete ones. I did not want treatment #2 postponed by one day- my oncologist set me straight with the comment, "I am here to cure you, not to kill you!" And thank God I did not get it- it was that night I was hospitalized with a blood infection. I begged him not to cut the oxil after treatment #6, challenging him with a BRING IT ON!! It was then that he told me about beginning to reach the toxic level- which made sense. He told me, "look at you, you can barely speak due to mouth sores, you have big black circles under your eyes, you came in in a wheelchair, you can not keep your head up- there is no way I am giving you the same dose of oxil!" In fact he wanted me to delay a week, but I said, nope, you got your way with lower oxil dose only if I get treatment today. And I did. Treatment #8 I tanked big time, I was really sick. He met me after I was admitted and said, "guess what, you are done with oxil". Weeks later he told me he had been concerned that #8 was going to do me in-

So, making my long story short, lol, it fits from my experience that they would not reduce chemo doses due to low counts, that they just postpone the chemo. And yes, it sounds like you are beginning to feel the total affects of many treatments with side issues that do get worse. It is those issues that bring chemo dose down.

Annabelle41415's picture
Annabelle41415
Posts: 6550
Joined: Feb 2009

Wow you have gone through a lot with your chemo, I guess they didn't reduce yours either. My new oncologist said they won't decrease it only because the want the strength of all the chemo to keep any cancer (if any) from spreading which I already knew and made sense but they did mentioned reducing it before.

I'm sorry you had to go through all that and I hope that you are doing better.

I started #6 treatment today, and those shots made me ache all over. I'm only up at this late hour because I unfortunately leaked for the first time from my ileostomy and had to start from step one and the steroids are keeping me awake.

I'm taking another round of chemo at 10:00 today so I'll be up late again tonight. Thanks for your reply.

Kim

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Kim,
Good to hear you are back on your chemo. I know it is a double edged sword cause being on the chemo stinks but we know it is kicking any cancer into oblivion. Dick has said the same thing about each time being harder. He is also hooked up right now, on number 11. One more to go!

Take care.
Aloha,
Kathleen

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

My oncologist told me from my first discussion of chemo that they would start with the max for my weight and height and that they would reduce if necessary. He said many, if not most, need some adjustment. Mine was reduced when my WBC's dropped after my 2nd or 3rd tx.

Glad you had your tx, tho! Glad to hear all the counts are good, too.

Big Hug,
Diane

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Hi Kim, Glad to hear they were able to start it even though it's not the most fun as far as parties go. Just like everything else, there is more than one way to kill cancer or administer chemo. I've never in over 5 years had chemo held back for blood work, don't know why. I'm lucky I guess??? At least the ball is rolling again and hopefully you will over with it soon.
I hope it doesn't hit you too hard
-phil

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

so glad for you ,Let the chemo begin.

michelle

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Kim,

Glad to hear you got the party started. I'm at chemo right now, I to have been feeling more tired myself. I'm on number 5 of 12, seems like it's never going to end.

Good luck and I hope your doing better.

Dave

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kim,

I'm glad the shots worked and brought your counts up so well (what do they say when they're now above normal? Maybe it's okay, assuming today's chemo will knock them back down some).

I just wanted to say, back when I was on oxy, that I did get my dose lowered slightly towards the end (I think on treatment #9). One time my treatment was delayed a week from low counts. It was delayed one other time about a year ago from low counts when I was on irinotecan (which I just started up again yesterday on Folfiri).

Anyhow, I have only taken neupogen shots two times before. Both times, I had to give myself the shots over 4 days in a row. It was an awful experience with pain and my worst pain was in my sternum. It was so bad and so gripping that I thought I was having a heart attack & they even sent me right in for an EKG (which was fine). Since that time, I never took the shots again & my counts came up on their own the next time I had a problem- that was when we delayed treatment a week.
Now, my new oncology office apparently does the shots routinely and they want to give me a neulasta shot when I go into the office tomorrow to get my pump unhooked. I was told they do it because they know my counts will go down. I'm kind of frustrated because I told them of my history with the neupogen shots pain, needing the EKG, and how my counts came up on their own after that & how I don't want to take neupogen or neulasta again unless it's absolutely neccessary. Their standpoint is that I've had so much chemo and they want to prevent my counts from going down in the first place, instead of trying to bring them up after they've dropped. That makes sense to me, but I'm scared to death of pain, the headaches I've heard described, etc. It sounds like maybe you had neupogen shots and not neulasta? Neulasta is usually given once and neupogen is usually given over 2-4 days in a row.

Well, Kim, you're probably getting chemo now as I write this- I am praying for you for all to go well. I'm doing okay so far today, myself, after my Folfiri infusion yesterday. I know of course, that many of my side effects will come on over the next few days, but I'm hoping they're not too bad.

Take care,
Lisa

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Lisa

Neulasta is a shot that is given once and not over multiple days. The time that I had mine was immdiately after a Folfox round that I did. I don't know if that is right or wrong, but that is the way that they did it.

I like to think of myself as a fairly strong person who can take a great deal of pain - and I'm not one to mention it.

But after taking the shot, I hurt so bad that I wanted to die - and I mean that. I got a headache that lasted for a full 5-days / 24 hours a day and nothing could I take that would even mildly take the edge off - I was taking advil/tylenol alternating them taking about 6 pills a pop and could find absolutely no relief.

I was bedridden because it hurt so bad you could not concentrate, watch tv, listen to music, surf the internet or carry on a conversation. Eating and drinking anything was out, just hurt too bad to even get up. I missed a few days of work and was in bed a good deal of the time. The only thing I could do was try and fall asleep - but even that was not much.

When I saw the doctor again - I told him unequivocally that was the last shot of Neulasta that I would ever take. And I meant it - I would not do it today unless they could put me in a 5-day coma and wake me when it's over. That kind of pain makes you crazy and you can't think straight.

That was the only time I had to take it because my white counts were low, but they gave me chemo anyway and then followed up with the Neulasta shot. Maybe Neuprogen I would give a try to see how that went - I'll try anything once :)

Blood platelets were always the issue for me - and Oxy destroyed those permanently. Ouch!

Hey Lisa - I like your picture - so nice to connect your words to a pretty face!

Take care and I'm pulling for both of you.

-Craig

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Kim,I am glad that finally this worked out for you.Good luck with this round of chemo.Take care.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Just a note - I get half of a Neulasta Shot each time after d/c. I have not had the headaches.

Annabelle41415's picture
Annabelle41415
Posts: 6550
Joined: Feb 2009

See my insurance won't pay for Neulasta only the other one. How can you get a half a shot? I know with mine it is supposed to be 300 mg and it is one vile per day. Pharmacist told me the Neulasta shot for one vile was $3,500 and the other was $280. But if you have to take that 10 times vs. one not much savings. Glad I only have to take 5 shots.

Kim

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i know you can do this.i to had the neulasta and procrit shots not fun but overall they did make me feel better.my insurance coverd my shots but isnt that so ridiculas 3500.00 for one shot.im in the wrong bussiness.we all need to get into the shot and pot business.well hang in there you are doin good.Godbless....johnnybegood

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Hope you all are doing ok... I have never had those shots and hope I don't need hem, the side effects sound horrible. My counts for the 5 wks of chemo before surgery were ok and I am now done with 3 of 8 treatments.. I am sure my counts will drop at some point. But so far so good. Hope your counts stay normal for you so you won't have to go through that again..

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