The Colon Club

Hi Everyone,

I contacted the Dr on call this morning to report my unrelenting diarrhea, she didn't offer much more than I am taking now other than increasing the dosage.

She then commented that the lab contacted her yesterday to report that my WBC was at 600. I asked her what we could do about that and she said it was from the chemo and probably rise on my off week but to be very careful of germs and report any fever etc. I am going in tomorrow to get hydration but no chemo and also get tested for infection in bowels just to rule that out.

I was neutropenic in January and ended up in hospital for an extended period and I'm so paranoid of going through that again. She didn't seem overly concerned about my WBC being so low, like it was expected. I asked her how it could be raised and she said it couldn't. She is covering for my oncologist who is on vacation so I'm feeling a bit wary of her casual approach.

Any suggestions?

Thanks!

Shana

Shana wrote:Hi Everyone,

I contacted the Dr on call this morning to report my unrelenting diarrhea, she didn't offer much more than I am taking now other than increasing the dosage.

She then commented that the lab contacted her yesterday to report that my WBC was at 600. I asked her what we could do about that and she said it was from the chemo and probably rise on my off week but to be very careful of germs and report any fever etc. I am going in tomorrow to get hydration but no chemo and also get tested for infection in bowels just to rule that out.

I was neutropenic in January and ended up in hospital for an extended period and I'm so paranoid of going through that again. She didn't seem overly concerned about my WBC being so low, like it was expected. I asked her how it could be raised and she said it couldn't. She is covering for my oncologist who is on vacation so I'm feeling a bit wary of her casual approach.

Any suggestions?

Thanks!

Shana

You were neutropenic in January and now again?
You on a second dose of chemo after surgery or what?

I've been neutropenic for 12 weeks straight. It takes me about 2-3 hours a day just to disinfect everything, wash hands ALL the time then slather on antibacterial hand sanitizer.
Somehow, I've avoided infection - all that work seems to be paying off.

Anyhow - yes there is something they can do about it. It's called growth factor injections.
Neupogen, Neulesta, Granix, Zarxio are the most common injections.
I've had a total of 11 incections from round 2 to current round 6 of folfox.

Bad thing is these growth factors also have the side effect of reducing platelets - which OXI already does.
So now on top of Neutropenia I'm suffering Thrombocytopenia.

Is your total white blood count 600 or just the ANC? Neutrophils.
I've been as low as 440 on the neutrophils. Usually after 3/4 injections I'm boosted to 2000+ neutrophils and like 15000 total WBC.

This boost got me for a few treatments, but after oxi it plummets fast back into neutropenia,

Most likely i'll be delayed treatment 7 due to low platelets.


I've posted a link on a few other threads about how to approach neutropenia. Look them up.
There is a lot of info in there that most cancer centers and onc's aren't even up to snuff on.
Lots of do's and don'ts about how to keep infection free. Like not eating anything raw, and not nuts, shell fish, etc..

I ended up tossing a lot of food away cause I simply could not eat it. Also don't drink any fluid that has been sitting out for more than 2 hours.
Even bottled water.

best wishes

benben wrote:[quote="Shana"

You were neutropenic in January and now again?
You on a second dose of chemo after surgery or what?

I've been neutropenic for 12 weeks straight. It takes me about 2-3 hours a day just to disinfect everything, wash hands ALL the time then slather on antibacterial hand sanitizer.
Somehow, I've avoided infection - all that work seems to be paying off.

Anyhow - yes there is something they can do about it. It's called growth factor injections.
Neupogen, Neulesta, Granix, Zarxio are the most common injections.
I've had a total of 11 incections from round 2 to current round 6 of folfox.

Bad thing is these growth factors also have the side effect of reducing platelets - which OXI already does.
So now on top of Neutropenia I'm suffering Thrombocytopenia.

Is your total white blood count 600 or just the ANC? Neutrophils.
I've been as low as 440 on the neutrophils. Usually after 3/4 injections I'm boosted to 2000+ neutrophils and like 15000 total WBC.

This boost got me for a few treatments, but after oxi it plummets fast back into neutropenia,

Most likely i'll be delayed treatment 7 due to low platelets.


I've posted a link on a few other threads about how to approach neutropenia. Look them up.
There is a lot of info in there that most cancer centers and onc's aren't even up to snuff on.
Lots of do's and don'ts about how to keep infection free. Like not eating anything raw, and not nuts, shell fish, etc..

I ended up tossing a lot of food away cause I simply could not eat it. Also don't drink any fluid that has been sitting out for more than 2 hours.
Even bottled water.

best wishes

Thanks for sharing your experience and I will look up the links. I was neutropenic in January when I was hospitalized. The Dr didn't label me neutropenic today and I won't be able to access my labs until Monday so I can view the raw numbers. My blood chemistry was totally off when I was hospitalized, I have lost 5 days of memory from that period. I went through two rounds of Folfox which landed me in the hospital twice, first neutropenic and second time with colitis. Oncologist said that Folfox and Xeloda were off the table.

I stopped chemo in March after second hospitalization and wasn't on any treatment until the end of April when I started on Cetuximab/Erubitux only to try and keep things in check. I ended up in the hospital anyway for a week with another flareup of colitis and severe malnutrition since I couldn't keep food down. They decided to put me on TPN to heal my gut and I was only allowed ice chips and few sips of water for medication. That helped me regain strength and stabilize me. I was in the process of weaning off TPN and introducing food again when I started feeling very uncomfortable and went to the ER where the CT showed total blockage. They couldn't remove the tumor because of size and proximity to other organs (same thing I was told at DX) The only option was a colostomy in the transverse colon. I was off all therapy for about 2 months to allow post op healing and also for genetic testing to determine my risk of toxicity to Irinotecan. The results were negative so oncologist started current regimen on July 24th. The side effects didn't kick in until about 10 days after first infusion.

I am staying away from public places, haven't even gone to the store and have only gone out for bloodwork and dr visit in the past week. I will ask about Neulesta, I have seen other patients with it on their arm after they finish their infusion. Thanks for the tips on avoiding infection and best of luck to you too!

Getting hydration today and for the next two days along with a shot of Zarxio today thru Wednesday.

i also requested a prescription for tincture of opium to see if that will give me some relief. Keeping fingers crossed!

Shana wrote:Getting hydration today and for the next two days along with a shot of Zarxio today thru Wednesday.

i also requested a prescription for tincture of opium to see if that will give me some relief. Keeping fingers crossed!

Are you experiencing pain?
I use CBD if I have or anticipate pain.
I usually use 25mg once or twice a day on zarxio shot days.
I forgot to dose this morning, but haven't experienced any pain - yet.
But really, the CBD knocks out pain by at least 50% in my experience and nausea - for me is completely gone with it.
Probably a lot less addictive and hard on the body than opium, but whatever works for you. I'm finding THC - which I take some nights for sleep,
Increases the effects of chemo brain, and so I've reduced to only the off week for taking 10mg of THC and 10mg cbd simultaneously.
For me the first couple shots caused extreme bone pain, but my body seems to have gotten used to it the further along I go.
Second session for zarxio had pain about 2-3 scale level, CBD knocked it out. 3rd session only experienced a few minutes of pain when I woke in the middle of the night.
This last session (4th) I've had 3 shots and one night for maybe 2-3 minutes had little spinal pain at the root chakra low spine, at the spine where it connects to the brain, and mild pain in teeth.
One of the zarxio side effects is decreased platelets - make sure you're monitored for platelet levels (I'm sure you are), but mine started dropping 20 points every session with the zarxio.
Last CBC my platelets dropped to 50... I told the nurses this morning if my platelets aren't at least 90 tomorrow I'm going to delay - perhaps an entire week.

Good luck, hope you don't have to use much of that opium for the bone pain.
Some people have good luck with claritin. Me - it didn't do anything but stress my kidneys.

benben wrote:

Shana wrote:Getting hydration today and for the next two days along with a shot of Zarxio today thru Wednesday.

i also requested a prescription for tincture of opium to see if that will give me some relief. Keeping fingers crossed!

Are you experiencing pain?
I use CBD if I have or anticipate pain.
I usually use 25mg once or twice a day on zarxio shot days.
I forgot to dose this morning, but haven't experienced any pain - yet.
But really, the CBD knocks out pain by at least 50% in my experience and nausea - for me is completely gone with it.
Probably a lot less addictive and hard on the body than opium, but whatever works for you. I'm finding THC - which I take some nights for sleep,
Increases the effects of chemo brain, and so I've reduced to only the off week for taking 10mg of THC and 10mg cbd simultaneously.
For me the first couple shots caused extreme bone pain, but my body seems to have gotten used to it the further along I go.
Second session for zarxio had pain about 2-3 scale level, CBD knocked it out. 3rd session only experienced a few minutes of pain when I woke in the middle of the night.
This last session (4th) I've had 3 shots and one night for maybe 2-3 minutes had little spinal pain at the root chakra low spine, at the spine where it connects to the brain, and mild pain in teeth.
One of the zarxio side effects is decreased platelets - make sure you're monitored for platelet levels (I'm sure you are), but mine started dropping 20 points every session with the zarxio.
Last CBC my platelets dropped to 50... I told the nurses this morning if my platelets aren't at least 90 tomorrow I'm going to delay - perhaps an entire week.

Good luck, hope you don't have to use much of that opium for the bone pain.
Some people have good luck with claritin. Me - it didn't do anything but stress my kidneys.

Oh I should have clarified, the tincture of opium is to help with the nonstop diarrhea. The dose is very small .6 ml once every other day and it is a 10% opium solution so doesn't get you high, but supposed to help with the loose bowels. I am fortunate to have very little pain but was warned about the bone aches and told to use Claritin or Ibuprofen. I'm not going to take anything until I feel it, this is my very first injection. I go back tomorrow for another shot and more fluids and same on Wednesday. I do have CBD which I used for nausea and appetite so I will try that too when I feel the bone pain, sounds like it's more when than if... how about heating pad, did you try that?

I will keep an eye on platelets, I get weekly bloodwork done and I always get copies to go over for myself and keep track of the trend. I so much appreciate all of your advice, thank you!!!

That's very, very low. Will you be seeing a different person tomorrow? If so, I would discuss it with them.

jhocno197 wrote:That's very, very low. Will you be seeing a different person tomorrow? If so, I would discuss it with them.

I don't think I will be seeing anyone but the nurses tomorrow for hydration and another shot. I imagine they'll want to retest me by Friday to see what my WBC is then. Yes that is a very low level and I was hospitalized in January with levels that low but had complication with blood chemistry levels all over the place. I am going to pick up a copy of the lab report with the latest test (from Saturday) tomorrow to see how it breaks down. I'm not sure there is much more that can be done beyond the shots to stimulate production of more WBC. In the meantime I am avoiding public places and people and being extra diligent with handwashing etc.

Thanks for the feedback, you're right about low level!

Shana wrote:

jhocno197 wrote:That's very, very low. Will you be seeing a different person tomorrow? If so, I would discuss it with them.

I don't think I will be seeing anyone but the nurses tomorrow for hydration and another shot. I imagine they'll want to retest me by Friday to see what my WBC is then. Yes that is a very low level and I was hospitalized in January with levels that low but had complication with blood chemistry levels all over the place. I am going to pick up a copy of the lab report with the latest test (from Saturday) tomorrow to see how it breaks down. I'm not sure there is much more that can be done beyond the shots to stimulate production of more WBC. In the meantime I am avoiding public places and people and being extra diligent with handwashing etc.

Thanks for the feedback, you're right about low level!

Diligent - LOL that's the word I use with my 17 yr old son. Keep hounding him about being diligent with keeping clean and cleaning stuff.
He does quite well, just needs some steady reminding sometimes as he can be moody from time to time. I'm sure its not easy for him to do it all and think about possible negative outcomes.

OK I wasn't aware of opium for diarrhea. That's good to know.
I had quite a bit of diarrhea this last week, which has been unusual since starting chemo. Had plenty post resection.
I had my third zarxio shot today. Had thur, fri, and today. Tomorrow I go in for another CBC. If my platelets aren't up to 90 I'm gonna request delay.
They pushed me through last session with just 77 platelet count. Don't want to drop back to 50 on platelets or lower. Want to avoid platelet transfusion.
Anyhow I forgot to take CBD prior to injection and didn't take any after. I regret, cause now I'm having some pain in lower spine. It's about 2-3 pain scale. So not too heavy.
I've read online that you should try to take something for the pain before it begins, because it can get pretty bad and is more difficult to subdue if you're trying to alleviate the pain after its begun.
I believe it, because that's exactly what I've experienced. I have not tried the heat, wish I'd bought one of the beanie bags that you just heat in mwave. I imagine the warmth would feel good on the spine.
I do notice showers help too. I'd imagine bath would have similar effect.

Took a little THC/CBD nightly mix and its just now starting to kick in and drop the pain along with making me sleepy.

Hope the shots boost the WBC for both of us.
hang in there .

benben wrote:

Shana wrote:

jhocno197 wrote:That's very, very low. Will you be seeing a different person tomorrow? If so, I would discuss it with them.

I don't think I will be seeing anyone but the nurses tomorrow for hydration and another shot. I imagine they'll want to retest me by Friday to see what my WBC is then. Yes that is a very low level and I was hospitalized in January with levels that low but had complication with blood chemistry levels all over the place. I am going to pick up a copy of the lab report with the latest test (from Saturday) tomorrow to see how it breaks down. I'm not sure there is much more that can be done beyond the shots to stimulate production of more WBC. In the meantime I am avoiding public places and people and being extra diligent with handwashing etc.

Thanks for the feedback, you're right about low level!

Diligent - LOL that's the word I use with my 17 yr old son. Keep hounding him about being diligent with keeping clean and cleaning stuff.
He does quite well, just needs some steady reminding sometimes as he can be moody from time to time. I'm sure its not easy for him to do it all and think about possible negative outcomes.

OK I wasn't aware of opium for diarrhea. That's good to know.
I had quite a bit of diarrhea this last week, which has been unusual since starting chemo. Had plenty post resection.
I had my third zarxio shot today. Had thur, fri, and today. Tomorrow I go in for another CBC. If my platelets aren't up to 90 I'm gonna request delay.
They pushed me through last session with just 77 platelet count. Don't want to drop back to 50 on platelets or lower. Want to avoid platelet transfusion.
Anyhow I forgot to take CBD prior to injection and didn't take any after. I regret, cause now I'm having some pain in lower spine. It's about 2-3 pain scale. So not too heavy.
I've read online that you should try to take something for the pain before it begins, because it can get pretty bad and is more difficult to subdue if you're trying to alleviate the pain after its begun.
I believe it, because that's exactly what I've experienced. I have not tried the heat, wish I'd bought one of the beanie bags that you just heat in mwave. I imagine the warmth would feel good on the spine.
I do notice showers help too. I'd imagine bath would have similar effect.

Took a little THC/CBD nightly mix and its just now starting to kick in and drop the pain along with making me sleepy.

Hope the shots boost the WBC for both of us.
hang in there .

Hi Ben,

The shots did the trick, WBC back up to 7000! I just got Cetuximab infusion today. I just hate to lose ground with treatment but my potassium is still low due to the extreme diarrhea. By the way the tincture has been amazingly effective, I have reduced my dosage and only use it when I really need it. Hopefully I will be able to resume Irinotecan next week. I will need to get my labs and check platelets, I'm not familiar with the part they play in blood chemistry.

No change to CEA, the value was expressed at >1650. It's freakish high but way down from my first CEA in December which was over 6000... My oncologist is on vacation, the Dr who I saw today can't seem to explain why my numbers are so high. She said it's not an indicator of how involved the cancer is yet the trend is important for the individual. Riddle me that??

I hope you're having a good week and the shots have helped you too. There's just no "normal and expected" with chemo and side effects. Just trying to stay positive and making the most of every good day

Shana wrote:
No change to CEA, the value was expressed at >1650. It's freakish high but way down from my first CEA in December which was over 6000... My oncologist is on vacation, the Dr who I saw today can't seem to explain why my numbers are so high. She said it's not an indicator of how involved the cancer is yet the trend is important for the individual. Riddle me that??

A hugely high number may only mean a small tumor in one person, whereas a smaller number in another person might mean a larger tumor. Some tumors just express more CEA than others.

jhocno197 wrote:

Shana wrote:
No change to CEA, the value was expressed at >1650. It's freakish high but way down from my first CEA in December which was over 6000... My oncologist is on vacation, the Dr who I saw today can't seem to explain why my numbers are so high. She said it's not an indicator of how involved the cancer is yet the trend is important for the individual. Riddle me that??

A hugely high number may only mean a small tumor in one person, whereas a smaller number in another person might mean a larger tumor. Some tumors just express more CEA than others.

Thanks jhocno197, you've explained it much better than the oncologist. I will just wait and see what the trend is and also ask about next CT. I had one in June before surgery which showed shrinkage of both primary tumor and the two in the liver.

Thanks jhocno197, you've explained it much better than the oncologist. I will just wait and see what the trend is and also ask about next CT. I had one in June before surgery which showed shrinkage of both primary tumor and the two in the liver.

Glad to hear the tumors are regressing for you Shana. I hope they continue to shrink for you until they are non-existent or operable.
Also glad the zarxio is working for you and with no pain

best wishes.