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Chemo postponed!

cahalstead
Posts: 119
Joined: Jan 2007

Hi to all,

If you recall my previous post, I was asking you guys about working, the side effects, etc. I had my bloodwork and dr. app't yesterday, my WBC was too low and also my platelets. I'm having significant side effects and now it is affecting my blood levels. He told me that he felt I needed a break from the regimen. Of course, I panicked & bombarded him with questions about the effectiveness of the chemo if shortened, etc. He told me not to worry, a break in the routine is very common and it won't affect my chances for success from the chemo. He also told me he was cutting my dosage strength about 20-25% since my blood levels are becoming involved. He assured me the reduced dosage levels are not unusual and certainly follow the protocal of the trial tests that were done regarding my "regimen" (oxalyplatin, 5FU and leucovorian). I do admit, my symptoms are getting pretty bad, my chemo brain bothers me at work and I'm having leg problems, my legs just don't want to work right. So, I'm getting a 3-week break and see how the white counts go but I'm concerned I may not be able to continue this. This week would have been cycle 5. I'm so excited to get a break in this. I took 3 days off to have my treatment but instead of going to work (after the p/postponment) I really needed this long weekend to rest up.

Please share your thoughts w/me!!

Thanks again.

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi,

First I understand how you feel about not doing the treatment. When I was told the two times I had to postpone, I started to cry. I think the reason is because you just want everything over and the worry gets you emotional (girl thing too??) After I thought about it though I realized I wouldn't feel so bad the week off and that made me happy. I could keep up with my kids more.

I don't remember but are you taking any shots for your WBC or red blood count? I had low WBC and had to take Neulasta after each treatment. I gave this to myself which isn't hard and it was covered by my insurance. I also took mega iron pills (and yes that is the name of them) that helped me with the redblood count. I also got a shot for the red blood count after each infusion week. Started with an A I think but can't remember the name. I will ask today when I go to the oncs for my checkup. I was on the same regime but only made 9/12 treatments because of the neuropathy and my high blood sugars. I'm stage 3 and I told my doctor that my body was telling me it had enough. This was July 2006 when I stopped and so far I think I'm NED. HUGS and know that most of us get postponed. I was also told that it wouldn't lessen the effectiveness of the chemo. Remember that you are close to that light at the end of the tunnel. Just stay focused on that.

Lisa F.

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

I can understand perfectly how you feel, because same thing happened to me more or less at that cycle as well,my platelets where very low, and my rbc and wbc where very low as well, I took some shots for these last two, but for the platelets is not to much that can be done, I was in the same regime that you are and my onc. reduced my dose by 20%, I was very worry for that and asked him if I could do 1 or 2 extra treatment to make up for the 20% reduction, and he told me, that if it was going to give peace of mind we could, but in his opinion was not necessary at all,so after my 12 cycle I decided that was enough, and was going to follow my onc.advice that was not necessary. So I feel confortable with that desicion. I hope that you will feel the same peace of mine that everything is going to be alright.

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

I can understand perfectly how you feel, because same thing happened to me more or less at that cycle as well,my platelets where very low, and my rbc and wbc where very low as well, I took some shots for these last two, but for the platelets is not to much that can be done, I was in the same regime that you are and my onc. reduced my dose by 20%, I was very worry for that and asked him if I could do 1 or 2 extra treatment to make up for the 20% reduction, and he told me, that if it was going to give peace of mind we could, but in his opinion was not necessary at all,so after my 12 cycle I decided that was enough, and was going to follow my onc.advice that was not necessary. So I feel confortable with that desicion. I hope that you will feel the same peace of mine that everything is going to be alright.

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi -

Many of us have had chemo postponed / taken "chemo breaks". I know my situation was a bit different - being Stage IV there is no predetermined number of treatments. But, I lengthened my 3 week cycles twice and after 6 cycles took "a break". That was 18 months ago and my "break" is still going on due to clean scans.

When you are on "adjuvant" chemo (Stage III or less), a break should not hurt. My oncologist told me there is lots of information / new thinking out there indicating that chemo breaks are preferable to beating the patient into the ground and also that the chemo is just as effective even when breaks are taken.

I am sorry you blood counts aren't good - that never happened to me. But, there are drugs to help that. Someone mentioned iron. I would caution you about that as it can cause the most HIDEOUS constipation - something you really don't want to experience if you don't have to.

Good luck,

Betsy

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

My chemo was postponed for blood levels, too....seems quite a common occurance....my onc said it well:

"We REALLY want to kill the cancer, but NOT YOU in the process".....

Hugs, Kathi

Faith4Cure
Posts: 405
Joined: Mar 2007

Hello
I know this is a very stressful time for you. My husband had the same problem. He was also on 5FU,oxalyplatin, and leucovorian. After about the 5th treatment he had to have his dosage reduced 25%. He was to have a treatment every two weeks, but he had 5 weeks between his 7th and 8th treatment. His WBC was too low for weeks after his 7th treatment. His doctor reassured us that his body needed a break and that this was common in other patients. We also panicked just like you and worried about the effectiveness of the chemo. I like to think that if our bodies have had enough and can't handle anymore chemo, then the cancer has been getting a pretty good beating too!!!!Maybe your body knows how much it needs to get rid of the beast!!! I hope you can get rested up this weekend and be ready to fight again!

Stay positive, have faith!

Faith

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Char,

I'm sorry about the postponement but I would not stress too much over it. It is very common with the wicked Folfox chemo regime. I did not respond to your working question but will now.

I think you said you work for the government and have for awhile which means you have some really good benefits that will pay you while out on short term disability. For the life of me, I do not understand why anyone would work while they could stay home, get paid, and fight the ******* cells on several levels. This is not a time to be a martyr, it's time to take care of yourself.

My job was such that after 4 months of folfox with Avastin (8 treatments...I mention that because I think multiple chemo drugs build up and impact us much more then just one drug does), I was doing the worse job I had in my 25 year career so I went out on short term disability. It was very humbling to me at the time.

There were some that asked if I was dying and/or giving up, but in reality I was just starting to fight. I had never concentrated on taking care of me before but was forced to back then. I do not regret one decision I made. There is no doubt in my mind that if I had continued to work, I would be dead or dying today, my job took that much out of me. My new job became taking care of my blood levels with my diet and lifestyle changes.

You have good benefits, use them, you earned them (not everyone does or can). Take care of you so you can keep up with your treatments.

Spoil you and let your body help you with this.

Let me know if I can help in any way.

Your friend, Lisa P.

cahalstead
Posts: 119
Joined: Jan 2007

Yes, I do work for the government and had lots of leave time built up but had to use 3 mos. of it for my spinal fusion done in December. I know that if push comes to shove I can have my sick leave advanced but don't really want to do that.

Thanks for responding to me.

CAMaura
Posts: 719
Joined: Feb 2005

Hey there,
Based on your last post, I am somewhat glad that you are getting a break.Not happy that your blood levels are low - just know that needed rest is in order.
My dosages were cut I think twice. And i was put on Procrt for my Red blood cells - and it worked.
Take care and see is you can get all of the rest you need. Hang in there and use this site for encouragement. We are here for you so lean on us, okay? But one thing to remember...you have a whole hella lotta chemo in you...NO WAY that cancer will come back at you during this needed rest. Try to eat really well and build your immune system.
Take care and hoping to hear from a rested Char!
-Maura

CAMaura
Posts: 719
Joined: Feb 2005

One more thing...for your legs. If you can, get on Vitamin B6. My doc's website even approved of it..?!
It really helps the neuropathy. I think I took 200mg/day, but it is a B viotamin and you cannot overdose. I think it might help you.
Take it easy - Maura

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

yep - blood work tanked at about the 5th treatment for me too. I got really sick and did not get out of bed for 3 days. I do believe that there is a very delicate balance between our immune system and the amount of chemo we should have. Our bodies know when we are full and for me I knew that if I pushed for more it would be a bad thing. It was after I crashed so bad that i really got back to juicing and taking my suppliments. The juicing for me solved the constant bowel mood swings I was having and when i went back on chemo, my counts stayed good for the rest of my treatments.
Hang in there, Try the fleese bag with rice for the hands and feet.
Limey.

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

I have to say that you are one pretty gutsy person to be able to put up with all you are going though and work as well. I only did 5fu/leucovorin (oxaliplatin was not available in oz back in 03) and for me the last 3 months was hell. Yup...I know it effects people in different ways but I shudder when I hear some work throughout their chemo. That takes a lot of willpower, something I did not have. I know some patients financial needs come into play here but I agree with Scouty (hi honey!) that there comes a time when health issues need us to step back, take a look at how we feel...and act accordingly. If you are able to use advanced sick leave...better now before your health suffers greatly, to the extent that recovery will take much longer...which would lead to more off-work time. Take leave now if you can before you hit the wall and get worse.
Ross and Jen

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Char,

You have gotten some great information and advice. So I'll just add well wishes to the mix. While being treated with Folfox, I got toxic hepatitis which caused me to delay treatment for several weeks until it resolved. My last three oxaliplatin infusions were administered over three hours vs. two. Sending you my best and knowing that things will be well. Listen to your body and rest as needed.

Hugs,

Kay

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