Chemo round #2

[Kathryn in MN]

Well yesterday was the scheduled start of round #2. But after seeing my labs, the oncologist said my blood work was not good. My hemoglobin dropped to 11, borderline. My WBC dropped to 3, borderline. My platelets are at 200 (ok for chemo). But my neutrophils were at 1 (too low for chemo, they don't like you to be under 1.5). My lymphocytes are 1.3 which is ok. My monocites are ok at .4, which is up from .2 last week, which was too low. My RBC was at 3.9, borderline.

At least I know why I'm so darn tired.

The oncologist gave me 3 options.
#1 Go ahead with chemo if I agree to Neupogen shots (to help bone marrow grow neutrophils to maturation faster and release them into the blood stream) next Monday, Tuesday and Wednesday.
#2 Postpone till Monday - probably still need the shots, but maybe I'd have a little more energy built back up first.
#3 Postpone a full week. Probably wouldn't need the shots.

The oncologist leaned towards #1 or #2 due to my CEA rising as it has been. And that has been scaring me too. Since I’m only on cycle #2, I hate to back off at all. If I waited till Monday, then the next session would have to be a Monday, or possibly push out till Wednesday. But I couldn't get back on the schedule I want for several cycles. It would have ruined our family Thanksgiving plans. And this is likely the last Thanksgiving we will have everyone together.

So I decided to suck it up and go for it. I am not allowed in public places – no schools, theaters, grocery stores, hospitals or doctor’s offices (unless it is my own appointment). It is a good thing I work from home! I am not allowed around sick people.

I told the doctor how awful last time was, and that if I could choose between colon resection surgery and another round of chemo, I’d choose the surgery. And that I knew I couldn’t do more than one more round of chemo if it was that awful again. But he still didn’t want to back off on anything. He said one more round at full blast, and we’d re-evaluate next time. Darn!

So I did get my chemo. But this time we added Emend. ($100 per pill, but right now my insurance covers it all. Cheaper for them to pay that, than the emergency trips in for fluids and IV anti-nausea drugs like last time.)

The neuropathy issues set in right away again. I got a slight sensitivity to cold in my hands. And again, trouble swallowing anything cold. Then my right hand locked up on me – I couldn’t move it or my fingers. After a bit some fingers could move but my pinkie could not. I had to physically move it with my other hand – weird. After that it worked again. Then the jaw pains set in again. (My oncologist told me he didn’t think the jaw pains were part of the neuropathy. I know better because I found a few other people that have had to deal with this too. Not common, but does happen. I’m going to research and send it to him.) He wanted me to take pain killers for it – ibuprofen – but I can’t take that. So he said Naproxen or Acetaminophen. And if that isn’t strong enough, go to the narcotics and take Vicodin or Percocet. No way. Pain killers make me feel so sick. He is worried that I won’t eat due to the jaw pain. But I will. It is very severe at the first few bites, but then lets up. I can tough out the pain. I just don’t want to get to the point of permanent neuropathy in my jaw/face/throat.

Then the good news came! The nurse said the Dr backed off on my 5-FU! He took out the bolus shot of 5-FU to get it going before they hook up the pump. HOORAY! My colon cancer nurse navigator pulled out the numbers and we figured this is a 15% reduction in the total 5-FU I will get. I think he realized when I said how tough it was last time, and he could see what happened to my blood counts with just one cycle, he decided backing off a bit is probably a good idea.

When I was done, I stopped by the bathroom, and I checked my tongue in the mirror – don’t want any thrush surprises this time. But after I stuck out my tongue, it caused weird face spasms. My cheek muscles were pulled upward. I could only pull them down with my hands. I asked Vicki if I looked ok, and she said other than the really funny expression on my face. But I wasn’t making any expressions! And my throat started to hurt more and more. Instead of just having swallowing cold items hurt, I couldn’t swallow my own spit. It was like swallowing glass shards – worse than the worst case of strep throat you can imagine. As we were walking out I was complaining about the face contortions and the throat hurting. An employee overheard us and grabbed a nurse. That nurse brought me back to my chemo nurse. She said I was having an allergic reaction and needed Benadryl. No driving. I have a driver, so OK.

So my 5-FU pump was disconnected, and I was hooked up to Benadryl. Within minutes I had trouble staying awake. And I didn’t make much sense. I said really stupid things to Vicki. It was weird. It was like getting a hypo. So I nodded off for ½ hour and got the Benadryl, and the throat and face issues got much better. I could swallow my own spit again (but still nothing cold), and my face wasn’t going wild any more. So, I was hooked back up to the 5-FU, we were allowed to go home.

All along the plan was to stop at Good Earth for lunch. But now it was 3:30, the start of rush hour traffic. And I wasn’t certain I could stay awake for lunch. I slept most of the way home. I crawled into bed at 4:30, and was out by 5PM, until 7AM! Crazy!

Round #2 has been much easier on me. I’m beyond tired, totally exhausted. The stabbing jaw pain is the same as last time. So is the problem if I try to eat or drink anything cold – has to be room temp or warmer. And I have a new issue – lots of eye twitching. I have a bit of nausea, and really no appetite. But I’m still eating and drinking, and don’t wish I could just die like last time. Granted I haven’t hit the worse days of Saturday and Sunday yet. But this Friday compared to the last one is much better. So far I have confidence I can do this 10 more times.

Now I have Monday to look forward to. I’ve been told to expect quite a bit of bone pain, probably the most in the chest and back from the Neupogen shots. But it will get my blood counts back up. I can deal with a little pain to keep from getting infections and other problems. I can do pain – no problem – just a little complaining from me. I can’t do nausea that is never-ending, with extreme fatigue, but no ability to sleep. That pushes me over the edge. And if I need extra fluids I can get them when I go in Monday or Tuesday rather than waiting for Wednesday for labs like I did last time. Of course now I know better and would go in for fluids without waiting that long again anyway, if I have bad trouble like round #1.

I did get quite a bit of work in today. But I’m fading. Tomorrow maybe I can work a bit again. Home health comes out to disconnect me at 1:30 tomorrow, and I think that will always be something I look forward to.

[Surroundedbylove]

Hey Kathryn,

So sorry to hear your counts dropped so much after one cycle of FOLFO - that's exactly what happened to me (although my WBCs were even lower). Hang in there and don't forget that you've got Xeloda as an option in lieu of the 5FU. If you are like the people in the studies (and like me) Xeloda may have less of a negative affect on your counts.

Thinking of you as you deal with the side effects this cycle and here's hoping you don't have as much nausea with the Emend!

[EdFromCT]

Wow! You seem to be suffering the same side effects as the rest of us have experienced, but all at once, and in a stronger than normal version. I'm really sorry to hear about this after all the troubles you have already experienced. As a small suggestion, next time around you might want to wait a few days to see if the neutrophil counts show some spontaneous recovery. When I was on FOLFOX this happened a few times, with jumps from 0.8 to 2.0 between the first week and the second week after chemo. I don't know how common this is, but if you show a similar response with a slight delay in treatments it could avoid some of the need for secondary medications. As has already been mentioned, another option is switching Xeloda rather than 5FU. For me it improved the white cell counts greatly, though at the expense of causing much more hand-foot syndrome.

Although I certainly don't want to second-guess your professional care providers, several aspects of the response to oxaliplatin that you describe sounds less like an allergic reaction than a severe form of the "usual" problems. For instance, a number of us have commented on severe jaw cramping that disappears after a few bites. I was even able to trigger this just by holding a cookie in my hand near my face, without opening my mouth! In any case, keep a close watch on the potentially permanent neuropathy symptoms, such as numbness or tingling in the fingers and toes, or persistent problems with muscle control. If they begin to persist all the way from one treatment to the next, be sure your oncologist is fully aware of this. Actually they will probably be monitoring you extremely closely anyhow, because of the allergy angle.

Good luck, and I certainly hope this goes easier for you the next time around.

[NWgirl]

Oh Kathryn - this is not fun. Your body truly hates chemo. After my first round of FOLFOX my blood counts were in the toilet - so I had to postpone round #2 an extra week. After that my oncologist always gave me the Neulasta (sp?) shot - it was just one shot and they gave it to me on day #3 - the day they disconnected my pump. If they remembered to bring the shot up to room temp or at least close, it didn't hurt as much going in. And I was one of the rare exceptions that did NOT have any bone pain. My shoulders and neck would get a little stiff/sore, but not bad. My big thing was nausea - I experienced other side effects, usually the first day - like the eye twitching, muscles locking up - but nothing like what you're going through. And the Emend made the nausea bearable. Not good - but I could suck it up - be tough - and get through it. When I thought I just couldn't go on, a break would come up for some reason or another - like the 3 week break before and after radiation.

I sincerely hope future rounds get easier. Maybe you'll be the exception and things will get better with each treatment eh? We can be hopeful anyway!

[willtowin]

Kathryn...

You are really experiencing it all! I think that is one thing i learned the hard way, I must be ready for constant change with chemo. Low counts, delayed treatments and many neupogen shots. I had them after every treatment at round 3 i think. I will say, my first two rounds may have been the hardest...so hopefully, you will adjust as well.

One of my lifesavers during treatment...was our ozarka machine. It dispensed hot and cold water so I could drink warm water quickly without pain. If you crave juice or something..buy the individual servings and keep at room temp..that helps too.

Oh, and the bone pain wasn't as bad as expected w/ neupogen. I did however, get some bad headaches from them. Don't let that suprise you. (hydrocodone doesn't work on headaches either..fyi).

Emend is fantastic....you should feel better with that...and w/ out the thrush you will feel even better. I got it alot and had to takes weeks of the diflucan to keep it at bay.

Hang in there....I think you made a good decision today...Good for you.

[KarMel]

Kathryn

You have my sympathies...I am due for round 11 on Tuesday, and have had many of your same symptoms. That cold sensitivity is a major nuisance. ( Luke warm yogurt, anyone? ) Are you getting a pre-treatment shot of steroids? That helped delay the fatigue, at first. I remember the first few chemo's, I was so hyped up from the steroids, I felt like superman (ok, woman). I would go exercise, clean house, bake and cook, and then I couldn't sleep at night without my little friend Ambien. The steroids don't work as well anymore, Now after treatment, I go home and crash. Definitely don't need a sleeping pill, anymore.

I remember after treatment #2, 3 days out, I went to an Amish buffet with a bunch of friends. Big mistake, but I felt like getting out of the house and being social. I ate about half of a chicken leg, one cookie, and 2 bites of broccoli salad (which I usually love, but it tasted weird) and I was done.

All the posts I have read said to drink, drink, drink... don't get dehydrated . And try to get a little exercise each day. I had no side effects from the Neopogen shot. Not everyone gets side effects from every drug.

Blessings to you!

[KarMel]

Emend is fantastic....you should feel better with that.

I have never heard of Emend? What is it? What class of drugs does it fall into, does anyone know the generic name?
Is it better than Zofran?

Thanks.

[Surroundedbylove]

Emend is fantastic....you should feel better with that.

I have never heard of Emend? What is it? What class of drugs does it fall into, does anyone know the generic name?
Is it better than Zofran?

Thanks.

Emend works in tandem with Zofran. It is usually given by IV on day 1 with your chemo and then you have a prescription for pills for day 2 and day 3. It is supposed to actually work to help control nausea later in the cycle (although you take it days 1-3). I don't know the class of drug but that should be available on drugs.com.

[willtowin]

Emend is fantastic....you should feel better with that.

I have never heard of Emend? What is it? What class of drugs does it fall into, does anyone know the generic name?
Is it better than Zofran?

Thanks.

Emend works in tandem with Zofran. It is usually given by IV on day 1 with your chemo and then you have a prescription for pills for day 2 and day 3. It is supposed to actually work to help control nausea later in the cycle (although you take it days 1-3). I don't know the class of drug but that should be available on drugs.com.

I actually took a pill of emend right after my labs and i was ok for chemo on day 1, then day 2 and three. It is sooo much better than zofran w/ no sleepy or other side effects. It is expensive though. I paid almost 300 each time w/ insurance. I don't know what class, It isn't a narcotic that is all i know.

[Surroundedbylove]

Emend is expensive like willtowin mentioned. With insurance mine was $100 per cycle. There is no generic.

[Gaelen]

The neuropathy issues set in right away again. I got a slight sensitivity to cold in my hands. And again, trouble swallowing anything cold. Then my right hand locked up on me – I couldn’t move it or my fingers. After a bit some fingers could move but my pinkie could not. I had to physically move it with my other hand – weird. After that it worked again. Then the jaw pains set in again.

Did these things happen during infusion? Or after you left?
If they happened or started during infusion, you need to tell the infusion nurses right away.

He [oncologist] wanted me to take pain killers for it – ibuprofen – but I can’t take that. So he said Naproxen or Acetaminophen. And if that isn’t strong enough, go to the narcotics and take Vicodin or Percocet. No way. Pain killers make me feel so sick. He is worried that I won’t eat due to the jaw pain. But I will. It is very severe at the first few bites, but then lets up. I can tough out the pain. I just don’t want to get to the point of permanent neuropathy in my jaw/face/throat.

And my throat started to hurt more and more. Instead of just having swallowing cold items hurt, I couldn’t swallow my own spit. It was like swallowing glass shards – worse than the worst case of strep throat you can imagine. As we were walking out I was complaining about the face contortions and the throat hurting. An employee overheard us and grabbed a nurse. That nurse brought me back to my chemo nurse. She said I was having an allergic reaction and needed Benadryl.

Kathryn, you have GOT to communicate this stuff to the oncology staff as it happens. ANY change, EVERY change is important during infusion and in the time afterwards, and if staff doesn't know, they can't help you. Allergic reactions like you're describing can turn life-threatening in seconds. Telling the oncology nurses AS something is happening is a patient responsibility...and too often, we try to tough it out, or we don't think it's significant. Considering your severe reaction and that it's only round 2, they may/should pre-medicate you with Benedryl for round 3, and put you in a place where they can visually monitor you during the entire infusion. On benedryl pre-meds, I slept five hours of a six hour infusion, woke up in time to drive myself home, and then crashed within a couple hours of getting home (just as you describe.)

I know you want to push yourself to work, but you NEED to rest - and rest will help your blood counts level out more than pushing yourself to work at this point.

Now I have Monday to look forward to. I’ve been told to expect quite a bit of bone pain, probably the most in the chest and back from the Neupogen shots. But it will get my blood counts back up. I can deal with a little pain to keep from getting infections and other problems. I can do pain – no problem – just a little complaining from me. I can’t do nausea that is never-ending, with extreme fatigue, but no ability to sleep. That pushes me over the edge. And if I need extra fluids I can get them when I go in Monday or Tuesday rather than waiting for Wednesday for labs like I did last time. Of course now I know better and would go in for fluids without waiting that long again anyway, if I have bad trouble like round #1.

I did get quite a bit of work in today. But I’m fading. Tomorrow maybe I can work a bit again. Home health comes out to disconnect me at 1:30 tomorrow, and I think that will always be something I look forward to.

What I'm hearing here is more 'sucking it up' and less communicating, more of you trying to control the situation when at least for now, you and your body are still negotiating with chemo and its effects.

Wanting to control the course is fine, Kathryn, and perfectly normal - but it's often not possible. Please, don't push yourself through pain in the hope of raising your blood counts without making sure that the oncologist and his staff understand exactly what is going on with you, when it happens. 'Toughing it out' is not gonna do you any good, long-term, if you try to push yourself through symptoms to stick to the way you want your schedule to go. When that gets hard to remember, think about round 1. Think about disrupted lunch plans after round 2 because the nurses needed to intervene to stop an escalating anaphylactic reaction.

Think. And then make sure the oncologist and his nurses know what's happening AS it's happening...even if it is going to end up changing your schedule.

Changing schedules is something that happens on chemo. That's the thing that needs to be 'toughed out.'