CSN Login
Members Online: 6

You are here

Chemo sucks

Kazenmax's picture
Kazenmax
Posts: 256
Joined: Feb 2016

It sucks in so many ways. Yesterday I was to have my 4th treatment and my WBC was 1.8 so I have to wait a week. It sucks because on the one hand, I'm happy to have a break. On the other hand, it makes my 12 treatments even longer.

I've developed sores in the worse places... ugh. My fatigue is overwhelming some days. Nausea... out of 2 weeks I think I have 2 days where I feel ok.

Since I'm on the two week schedule I can't get Neulasta (doc says that's a 3 week thing).

Just trying to get through it. Needed to whine a little. I know you all are at different stages of this awful thing. I wish you all the best. just wanted to say chemo sucks!

k

 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 662
Joined: Apr 2017

People who have not been through it really don't understand.  Chemo assaults both your health and human dignity in so many ways.  I hear you.  Perhaps the short break will give you a taste of a more normal life.  Sorry you are going through this.

Kazenmax's picture
Kazenmax
Posts: 256
Joined: Feb 2016

Thanks. We all are at various points of the struggle. It's good to be able to lean on others.

 

sflgirl
Posts: 220
Joined: Jan 2015

I got Neupogen, not Neulasta.  I got it once a week before chemo, I was on the two week infusion  schedule.  However one week I was low and they wouldn’t infuse that day.  But they did give me a Neulasta injection,  it works quickly.  I was able to go back the next day and continue with chemo.  You might ask your doc about that, it could keep you on schedule to the finish line!

 

My Best to you.

Kazenmax's picture
Kazenmax
Posts: 256
Joined: Feb 2016

Thanks. I will definitely ask my doctor

plsletitrain
Posts: 253
Joined: Jul 2017

I was out of my 1st treatment yesterday on this new phase (after removal of the lung met) and I told myself I'm not going beyond 6.  It feels like a child who was about to go visit a dentist, if there's any way I could escape it I would.  I don't like the feeling of having the infusion, it takes too long.  I sometimes have to literally bring my feet forward just to move and walk.  I would go for my 12th infusion in 2 weeks and I'm not looking forward to it but I've got no choice.  We're in this together.  Let's do this. :(

Woodytele
Posts: 159
Joined: Apr 2017

I was on the two week schedule for the first 12 treatments, AND had a Neulasta shot after each one.  This prevents low WBC, and keeps you on schedule.  Not sure why your Doc says it’s a three week thing.  I still get the Neulasta shot every three weeks now after my infusion. 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

Kazenmax, do ask your oncologist about Neupogen. I'm currently on a regimen of FOLFOX plus Avastin every other week and am scheduled to receive 12  treatments.  My WBC  count dropped to 2.8 after the first treatment and I just got the third of three Neupogen shots yesterday.  Hopefully they will  bring the count up enough to get  the second chemo treatment on Thursday. The same problem occured when I  had Folfox plus Avastin the first time back in 2015,  requiring 17 Neupogen shots in all, but I was ale to complete 8 chemo treatments.  I found this article which explains the differences  between Neupogen and Neulasta:https://www.verywellhealth.com/neulasta-vs-neupogen-for-chemotherapy-treatment-430223

Grace/lizard44

Kazenmax's picture
Kazenmax
Posts: 256
Joined: Feb 2016

I will ask. I appreciate the information!

Ruthmomto4's picture
Ruthmomto4
Posts: 542
Joined: May 2013

i am only a caregiver but I do hope your counts come up so you can feel better! Your new picture threw me off I was used to the Eagles one being a NY Giant and a Patriots fan I like this much better ;)

Annabelle41415's picture
Annabelle41415
Posts: 5885
Joined: Feb 2009

It's not only hard to deal with the reality of diagnosis but then the after math shocks us even more.  It's surprising what we will put up with, how hard we fight and how literally we let ourselves battle just to get better.  I'm thinking about you struggling but let your doctor know.  It's not a fight you should be having alone. 

Kim

mountainhiker
Posts: 54
Joined: Aug 2018

Hey Kazenmax,

You're absolutely correct - chemo sucks in so many ways!  I too had low WBC after the first round of chemo and was on Neulasta for the remainder of treatment which did the trick.  In fact, it can do too good of a job.  I once had labs done 3 days after an injection and my WBC was 32.5Surprised

My chemo cycle was a 5 week deal.  Week 1 - HAI pump chemo, week 3 - systemic, week 5 - systemic, one week later rince and repeat.  So my systemic chemo treatments were two weeks apart between weeks 3 and 5, and three weeks apart between weeks 5 and 3.  I received the Neulasta shot after each 5FU bottle disconnect (actually disconnected myself at home and gave myself the shot).  Not sure why your doc is saying it's only a three week shot.

mountainhiker

PS. I live not too far from Philly and my son loves all things Philly sports.  Go Eagles!

Kazenmax's picture
Kazenmax
Posts: 256
Joined: Feb 2016

I just got back from my oncologist. My WBC is still 1.8. He said that it appears that I can't tolerate the current chemo and he would look into another option. I asked about both shots and he said that he thought I would be better without the shots. Evidently my platelets are in fine shape and all the other blood work looked good. He sent me over for a CT scan. He said he wanted to see how things were. I had no other evidence of cancer when I had my lung surgery. Now I'm hoping to get a clear scan. Maybe he's thinking about watchful waiting. i don't know...

Not sure what to think. But ultimately I have to wait another week to see what will happen. In the meantime he told me to eat well, drink lots of water, and get plenty of rest.

k

Ruthmomto4's picture
Ruthmomto4
Posts: 542
Joined: May 2013

And maybe you don’t need anymore chemo. It’s goid the other tests were good a lot of times all levels go low. So rest like he said, and hopefully things improve soon.

Kazenmax's picture
Kazenmax
Posts: 256
Joined: Feb 2016

From your mouth to God's ear! I'm hoping for no chemo or at least a break. Right after surgery my WBC was 3.2. maybe I just need a break! I have scanxiety waiting for results. Trying to think all will be good.

plsletitrain
Posts: 253
Joined: Jul 2017

I believe we're on the same boat.  I too had clean scans except for that one lung met that was removed via VATS wedge surgery.  I am now doing mop-up chemo (folfox) but I only intend 6, I don't think I can muster the 12.  I've also had all sorts of pain in the breast area and I'm hoping this is just one of those surgery effects and not something else.  I go for my 2nd infusion next week and I hope my bloodwork is fine.

Here's to hoping your bloodcount improves and for clean scans.  

Kazenmax's picture
Kazenmax
Posts: 256
Joined: Feb 2016

So your doctor also recommended 12 treatments? It just seems like so much. Especially since there was no other cancer any Place else. I finally came to terms with the fact that I have to do chemo and I was ready to do 12 for a cute. And now my body betrayed me and I can't. There anxiety in stopping chemo as well. Just a rough situation.

Good luck to you

K

abrub's picture
abrub
Posts: 2040
Joined: Mar 2010

I quit after 7.  However, in my case, they weren't sure of the value of the chemo, so it wasn't worth pushing through for me, and I was in agony.  I developed an anal fissure that was blindingly painful; every trip to the bathroom (even just to pee) left me in tears. And I had two babies with no meds.   (Very slow growing appendix cancer; chemo is the same as for colon cancer.)

Alice

AFBDVM's picture
AFBDVM
Posts: 1
Joined: Aug 2018

People only see you from the outside.  So when you don't lose your hair, they think you're fine.  They have no clue what's happening on the INSIDE, physically and emotionally!

 

Kazenmax's picture
Kazenmax
Posts: 256
Joined: Feb 2016

My family all day how good I look as if surprised. And that's as much as they will say. Don't want to discuss the details of chemo and side effects. It becomes a burden to say, oh I'm doing good, when all I want to do is cry on someone's shoulder.

K

Annabelle41415's picture
Annabelle41415
Posts: 5885
Joined: Feb 2009

Even my brother told me that.  You might look normal, like you say, but you don't feel normal.  Some days you just want to crawl into a hole and other days you pretend that you are normal.

Kim

pcmeiners
Posts: 4
Joined: Aug 2018

"Scannxiety " a new word. Smile Yes waiting for scan results can be scary,  just had a CT a few weeks back, got the result late last week, CT and blood work looks good.  I am surprised I got more worked up then normal about this last CT.

"So your doctor also recommended 12 treatments? It just seems like so much. Especially since there was no other cancer any Place else. I finally came to terms with the fact that I have to do chemo and I was ready to do 12 for a cut"

Same here, 12 cycles of 2 weeks, just finished. If the doctor recommends, do it, you will make it, possibly with some delays. I had completed 6 cycles, had surgery, had really bad anemia, healed for a month then did another 6 cycles... I graduated from Chemo late in May

Make sure you get blood work, checking for vitamin/mineral deficiencies, my anemia in part was caused by bottomed out B , D vitamins, and iron due to chemo....wow anemia sucks big time.

As to dealing with people on the subject of cancer/chemo I was able to go 2 years without telling anyone, that avoided a lot of conversations about my cancer or the chemo effects. In the last year it became impossible not to tell people. The subject comes up as it deals with human curiosity, and human nature's fear of death. Knowing that, it does not bother me when people ask questions or make comments. One thing does bother me, a couple of people gave me the "goodbye handshake",  like I have 2 weeks left to live...(I do not plan on dying anywhere in the near future)Smile

As far as the sadness, sometimes it is just good to cry for while. Personally I got to the point where I refuse to dwell on the situation, I have done everything I can . I have just accepted that I can not change what will be.

Ps  If you get mouth sores, there is a mouth wash called "First" which has lidocaine in it, by prescription only. It will allow you to take care of your teeth and or eat without pain. It does not make food taste good as chemo makes that impossible.

 

 

 

Godismystrength
Posts: 4
Joined: Sep 2018

I am on a two week regime for breast cancer.  I already had 4 treatments of A&C and two of Taxol.  I received Neulasta the 1st, 3rd and 5th treatment.  My WBC's were high before the even numbered treatments (14 to 27?) and low before the 3rd and 5th treatments (around 1).  If you go to the Neulasta site, it says you can give the Neulasta 24 hours after the chemo and again after 14 days.  Show that to your doctor.

i have had some pretty severe reactions to Neulasta, at least I think it's the Neulasta.  I had my second Taxol yesterday without the Neulasta, so we shall see what my symptoms are in the next few days.  I had the worst reactions two weeks ago.  They included severe deep bone pain all over my body, especially my knees and wrists, severe headaches, like someone was shoving an ice pick in my head above my left ear, my scalp felt inflamed to the pain wearing my glasses was uncomfortable, inner ear pain, extreme fatigue and weakness, loss of appetite, mostly due to sores on my tongue, depression, and severe pelvic pain, and my fever reached 101, but apparently not from an infection.  I was a mess.  I could barely walk because my knees felt like they were going to give out.  I had to call the on-call Doctor on a Saturday night of Labor Day weekend due to the fever.

I take Claritin now a day before and will continue for several days, even though I got to skip the Neulasta this time, since that seems to help other people.  Not sure it helped last time, but I didn't find out about it until I was already well into the pain.

I am hoping and praying that my WBC's will remain in the normal range for my next two treatments, if I find that the Neulasta is the culprit.  I am concerned about having a stroke or ending up with bladder problems.  i have asked about receiving half a dose, since my WBC's fluctuate so much on it.  O said no, but NP was more sympathetic.  I'm going to call the Neulasta help line to find out more info.

Has anyone else had problems with Neulasta?

 

mountainhiker
Posts: 54
Joined: Aug 2018

I'm on Neulasta now because of the massive amounts of antibiotics I'm taking for a bacterial infection.  My side effects last for 2 - 3 days after I inject myself.  For 2 nights I can't sleep the pain in my back and thighs is so bad.  I don't remember it being as bad when I was on the chemo, but I honestly believe it's because I felt so terrible from the chemo it couldn't get any worse.

mountainhiker

abrub's picture
abrub
Posts: 2040
Joined: Mar 2010

Your bone marrow is being over-stimulated to produce red blood cells, and it causes pain.  I've heard very good things about Claritin (Loratidine) starting at least day of Neulasta, and for several days thereafter.

LSU2001
Posts: 12
Joined: Dec 2017

I had my first 12 treatments with Folfox and Avastin and after each pump removal day I had a neulasta shot.  I never had any issues whatsoever from the Neulasta but I recently change oncologists and he switched me to Grannix after a long pause without Neulasta.  When I asked why he told me that the Neulasta should really be given on a 17 day rotation not 14 day so that if administered properly, it would mess up my chemo schedule.  Now I will have Folfiri with avastin on Wed. get the 5FU pump off on Friday and then go in for a 2 minute shot Monday, tuesday, and wed. of my off week.  So far no issues except having to get the shot three days in a row.

TIm 

5Cs
Posts: 8
Joined: Aug 2018

My husband starts claritin sometimes a generic as long as it contains Loratidine the day before the neulasta shot and continues for the next five days.  It does wonders!!  His doctor and nurses highly recommended it.  He failed to take it during one round and he was miserable so we know it works.

johanfou
Posts: 1
Joined: Feb 2019

I have started chemo for CLL in December 2018. Part of the treatment includes 4 shots of Neupogen 30 MU. Basically no side effects, apart from some back pain, but the I have had back pain before I started with chemo.

 

My best wishes to all "C" sufferes!!!Smile

Subscribe to Comments for "Chemo sucks"