The Colon Club

Well good news for me. I've had 3 zarxio shots this week and none resulted in extreme bone pain.
In fact the only side effects I had were:

A little increased fatigue during shot days
Slight pains/bloating at injection sites (rotating sides of my stomach).
Bone and muscle lethargy - especially during shot days.
Little more stomach unsettled - resulting in increased bowel movements with progressive loosening of stool.

All of the above is cakewalk compared to the first bonecrush experienced with granix.

So not sure why there is less bone pain, perhaps my body is now used to the treatment and is fighting it off less, or perhaps the 25mg dose of CBD prior to the shots is keeping it at bay.
Not really sure, but grateful that there hasn't been pain this go around - even with 3 shots.

Good news! I'm not sure I could handle having a shot in the stomach and then even more side effects than I already have lol. Glad at least this part has been easier for you this go around. Do you get to stop taking these shots or are they just part of your treatment now? Ive been lucky with my blood counts. That's the one area I haven't had any problems with yet.

Tdubz wrote:Good news! I'm not sure I could handle having a shot in the stomach and then even more side effects than I already have lol. Glad at least this part has been easier for you this go around. Do you get to stop taking these shots or are they just part of your treatment now? Ive been lucky with my blood counts. That's the one area I haven't had any problems with yet.

Yeah the extra side effects as well as the 2-3 hours of extra time per day it takes to try to avoid infection is quite a drag.

I spoke a little too soon about bone pain. Sunday, 2 days after the last injection I woke up at 4 am to some spinal pain.
Probably a 4-5 on pain rating - enough that I couldn't get back to sleep. I took a CBD mint 25mg and within 2 hours pain had subsided to 1-2 rating.
Easy enough to deal with that pain level. I was able to get up and work for most of the day. It's the first time I had bone pain on a day I hadn't received a shot.
So I was a bit surprised. Hopefully that means my counts are getting higher. I go in for lab today. They want me to draw a day earlier than infusion so they have more time to decide on things as well as give me another zarxio if needed. God I hope not.

Seeing how my blood counts were trounced after the first treatment - I'd say there is a good chance I'll be receiving these shots during the duration of my treatments.
My next session will be number 6. I'll talk with my Onc about the ASCO 6 treatment thing again - as he told me prior that he didn't want to talk about it until I was on treatment 6. He already has me scheduled up to treatment 8, so he may be dropping a hint to me .. Or more likely its just procedure formality and getting the patient scheduled in advance for insurance and so they have enough chairs. The center I go to is very busy, despite this being a relatively small city with population of about 180k.

I'm feeling more and more with each session that I can't take 12 OXI treatments. Going to ask about another 10% reduction after number 6 - and try to go at least 8 with OXI.
Then maybe just finish with 5-FU for duration. Will discuss more with Onc tomorrow provided my counts are up high enough to warrant another treatment.

Tdubz wrote:Good news! I'm not sure I could handle having a shot in the stomach and then even more side effects than I already have lol. Glad at least this part has been easier for you this go around. Do you get to stop taking these shots or are they just part of your treatment now? Ive been lucky with my blood counts. That's the one area I haven't had any problems with yet.

Double post?

Getting number 7 right now. Reduced the oxy to 80% this go around. My hands and feet are still tingling from the last one while I'm getting the next one lol. I was reading somewhere on here that in new zeland or Australia they only do 4 rounds with oxy, not sure if that's true or not but makes me feel good I made 6 rounds with full oxy, even though my 5FU has been reduced to 80% for the past 4 treatments.

Tdubz wrote:Getting number 7 right now. Reduced the oxy to 80% this go around. My hands and feet are still tingling from the last one while I'm getting the next one lol. I was reading somewhere on here that in new zeland or Australia they only do 4 rounds with oxy, not sure if that's true or not but makes me feel good I made 6 rounds with full oxy, even though my 5FU has been reduced to 80% for the past 4 treatments.

May treatment 7 fair well for you.
I'm still full 5FU and 90% oxi since treatment 3. So I got 2 full rounds of OXI and last 3 have been 90%.
I'm going to discuss decreasing OXI to 80% and possibly stopping OXI or reducing significantly like 50% if they think it will have benefit after round 8.
I feel like I've got a lot of everything built up in me right now. Can't imagine the OXI being out until I complete 4 more rounds of 5FU alone.

I got some unfortunate news from lab results today.
Seems the growth factors aren't doing much to elevate my neutrophils, while bashing my RBC down to 90.

So I was at 550 neutrophils. They believe tomorrow they will be up to at least 880 given my BANDS were 330. I didn't get one on one time with the ONC - just nurse relay.
According to nurse they want to do treatment again. ANYONE think this is a bad idea? Please let me know as tomorrow I go back in for another LAB
and they will keep me hooked up in anticipation of more treatment until labs come back. I got an additional Zarxio shot, not sure its doing much of anything other than trashing the RBC.
I'm quite discouraged with the blood count issue and concerned about this long term neutropenia, been about 2 months now living with Neutropenia.. Only climbed out temporarily a couple times.

I mentioned Neulesta to nurse, she said it was massive expensive so insurance companies would rather go the zarxio or granix route if it was enough.

benben wrote:I mentioned Neulesta to nurse, she said it was massive expensive so insurance companies would rather go the zarxio or granix route if it was enough.

I did Neulasta (I believe four of the eight FOLFOX treatments I had). It is ridiculously expensive, came up as $9,000 on the explanation of benefits. Fortunately my insurance never balked when I needed it. Sometimes it did such a great job that I would not need the shot the next time, that is why I only had four shots. While it did affect my joints a bit, I never had the bone pain you have been suffering through. I had to get the shot no less than 24 hours after I was disconnected from my pump so it meant a third trip to the cancer center on those weeks, but I was fortunate my treatments were never delayed due to my blood counts. I was never told of any other options, I had never heard of granix until reading through your posts on here.

Fingers crossed for you to be able to get a good plan in place to keep those treatments on time so you can be done as soon as possible while also not wreaking total havoc on your counts.

My wife gets really bad pain in her leg bones. One night I rubbed her legs almost all night so she could sleep. After that she took the Claritin and it help a lot. Good luck.

Soccermom2boys wrote:

benben wrote:I mentioned Neulesta to nurse, she said it was massive expensive so insurance companies would rather go the zarxio or granix route if it was enough.

I did Neulasta (I believe four of the eight FOLFOX treatments I had). It is ridiculously expensive, came up as $9,000 on the explanation of benefits. Fortunately my insurance never balked when I needed it. Sometimes it did such a great job that I would not need the shot the next time, that is why I only had four shots. While it did affect my joints a bit, I never had the bone pain you have been suffering through. I had to get the shot no less than 24 hours after I was disconnected from my pump so it meant a third trip to the cancer center on those weeks, but I was fortunate my treatments were never delayed due to my blood counts. I was never told of any other options, I had never heard of granix until reading through your posts on here.

Fingers crossed for you to be able to get a good plan in place to keep those treatments on time so you can be done as soon as possible while also not wreaking total havoc on your counts.

Thanks Soccermom. I didn't talk about Neulesta with ONC today.
The shot I received yesterday boosted me to 5570. What a difference from yesterday being at 550.. Crazy.
My platelets even increased from 90 to 99 in one day. So while platelets are low and Potassium was 2 points off normal - they are pushing me through treatment #6.
I'm in chair now getting fed potassium, soon to be OXI at 90% followed by the 5FU.

My Onc said he would give me the blessing of just doing 6 treatments. He said I would be his first patient that did 6 instead of 12. He did say that while the ASCO report suggested 6 treatments were nearly the same, it was just one study and that a 2nd study needed to be done to verify before it becomes standard. We talked about 3 scenarios.
1) stop after todays treatment. 2) go 8 rounds, starting round seven reducing oxi to 75%. Possibly completing 4 additional sessions with just 5FU. 3)Keep trudging along with goal of 12 Folfox treatments, pushing zarzio shots each session - 3 times.

While tempted to say lets stop after today, From what I've read and understood before the recent ASCO report, is that 8 sessions are needed to receive full oxi benefit.
So my current goal is to make it to session 8 and then go from there. The middle path.

tater wrote:My wife gets really bad pain in her leg bones. One night I rubbed her legs almost all night so she could sleep. After that she took the Claritin and it help a lot. Good luck.

I tried the claritin, but it didn't really help - seemed to also affect my kidney's as they were stressed after taking the claritin.

The CBD use seems to reduce pain by at least 50%. Which usually gets me into a workable/manageable state.

Doc gives me neulesta. I didn't even know about a shot option until doc brought it up when my counts were low. But he checked and said I'm not approved for it but I am for the neulesta.
They put it on the day of pump disconnect and it autoinjects the next day. I've been fortunate when I've gotten it with no side effects.
Just a heads up if you get neulesta and stick it on your stomach. Shave ahead of time if you have hair there. It will bring tears to your eyes when pulling off.

Volfan wrote:Doc gives me neulesta. I didn't even know about a shot option until doc brought it up when my counts were low. But he checked and said I'm not approved for it but I am for the neulesta.
They put it on the day of pump disconnect and it autoinjects the next day. I've been fortunate when I've gotten it with no side effects.
Just a heads up if you get neulesta and stick it on your stomach. Shave ahead of time if you have hair there. It will bring tears to your eyes when pulling off.

LOL, about the hair. I had one nurse put a bandaid on after getting injection.
Got home and had to shower and get loads of water in there to make it less painful to remove. Was more pain than the injection.

I don't think I'll be moving to neulesta this late in the game.
They have me scheduled for 3 shots these next two sessions. Thu/Fri and monday before tuesday infusion.
I'll get counts on monday, and tuesday if needed. Also reducing oxy to 75% - so hopefully I'll start to see rebounds on WBC and platelets that were down to 99.

Bone pain has manageable ever since the first injections been much reduced, and pretty much knocked out by CBD when and if it comes on.

After 8th treatment if WBC and platelets are still low, we will probably end OXI and try just 5fu for final four sessions.

Well yesterday I had my third zarxio shot for this session.
I forgot to dose CBD prior and didn't take any after. Probably should have.
As the night progressed I got some familiar bone pain in the spine. Was about 2-3 on pain scale so wasn't too great.
It did keep me up a little later than I had planned. But today was CBC and treatment 7 if platelets and WBC were up, and they were.
5 days ago my ANC was 440 - it had jumped to 4220. And interestingly enough my RBC increased a hair, but my platelets went up to 110 from 50.
So we pushed forward with treatment 7. I'm actually glad to not have to delay as it means it will all be over sooner. I've been really considering treatment 8 might be my last, but we shall see.

I was surprised by the platelets rebounding, was a first.
I had been eating some from a list of things to boost platelets with diet.
The nurse I spoke with on the phone said she hadn't heard of any foods that could boost platelets.
Well I ate 4 courses with pumpkin - some pumpkin pie, but also had pumpkin soup (blah). I used some of the soup to make a curry with potatoes and ground beef.
I also had about 4 courses of kale and upped my protein a bit more.

So perhaps people can do something dietary to help boost them, or could be a fluke. All I know is that I'll be eating pumpkin and kale a few times these next couple weeks. Maybe some wheat grass too.


Good luck to all!

Had my second Zarxio shot today, so far no side effects but it's still early... third shot is tomorrow and they are also going to test blood chemistry to see if the diarrhea has depeleted my potassium and whatever else it might affect.

It was interesting reading through this entire post, learned a lot! I've been getting 2 litres of saline along with the shot but they inject me on the underside of my upper arm which I prefer. The injection seems to go so slow and stings a bit, will do CBC on Friday to see what the WBC count is and if any of the other counts have lowered.

I requested one of the private rooms for treatment the last 2 days since I am neutropenic and frankly not feeling very social, I just want to sleep. I'm waiting for the tincture of opium to kick in, hopefully by tomorrow. My RX was written incorrectly which resulted in .6 ml every other day which is coded QOD. It should have been QID - 4x per day. My insurance is balking at paying for the correct dosage since I just filled it yesterday. I am asking the office to contact them and explain the error etc. Out of pocket cost is $550 which I shouldn't have to pay for an incorrectly written RX. I've only taken 2 doses so far due to the error, I only discovered it when I saw that Mayo clinic and a couple of other reputable websites recommended the 4X dosage to control diarrhea and asked the nurse about it today. Staying informed and advocating for yourself is so important.

Hope all goes well for you the rest of this week, this is such an uphill battle but we can do it!

Shana

Shana wrote:Had my second Zarxio shot today, so far no side effects but it's still early... third shot is tomorrow and they are also going to test blood chemistry to see if the diarrhea has depeleted my potassium and whatever else it might affect.

It was interesting reading through this entire post, learned a lot! I've been getting 2 litres of saline along with the shot but they inject me on the underside of my upper arm which I prefer. The injection seems to go so slow and stings a bit, will do CBC on Friday to see what the WBC count is and if any of the other counts have lowered.

I requested one of the private rooms for treatment the last 2 days since I am neutropenic and frankly not feeling very social, I just want to sleep. I'm waiting for the tincture of opium to kick in, hopefully by tomorrow. My RX was written incorrectly which resulted in .6 ml every other day which is coded QOD. It should have been QID - 4x per day. My insurance is balking at paying for the correct dosage since I just filled it yesterday. I am asking the office to contact them and explain the error etc. Out of pocket cost is $550 which I shouldn't have to pay for an incorrectly written RX. I've only taken 2 doses so far due to the error, I only discovered it when I saw that Mayo clinic and a couple of other reputable websites recommended the 4X dosage to control diarrhea and asked the nurse about it today. Staying informed and advocating for yourself is so important.

Hope all goes well for you the rest of this week, this is such an uphill battle but we can do it!

Shana

Hi Shana, I'm glad this thread gave you some things to think about, incorporate into your routine.

Yes the incorrect billing etc, gets a bit old. I find it odd how much my hospital and the other clinics expect out of their cancer patient in planning/scheduling and dealing with insurance stuff.
I can't imagine being elderly and having to deal with all that. Extra hours on the phone..

Anyhow, I hope you are still feeling good after your third shot. I found Granix gave bone pain day of second treatment, and zarxio seems to start kicking in round 3 at night with some pain 2-3 scale, and after 4 it can get up into the 4-5 range.
CBD of course knocks those right in half for me. Let me know how round 3 went with you. You might be one of those patients that doesn't get the bone pain. Which would be great for you. Maybe the opium will also numb the pain.

best of luck,

this is such an uphill battle but we can do it!

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