Pain and Nausea at Bay

The last few days have been crazy, but all the crises are under control (for now).  Rudy dealt with unrelenting vomiting and nausea.  He dealt with swallowing being a challenge - it felt like everything was sticking in his throat.  Pills were the worst.  Finally, he dealt with pain that became so unbearable he was unable to function.

Humor gets me through!  I've been chanting the real serenity prayer for days.  I came across this one this morning.  It gave me a good chuckle. 

I *think* we're fine now.  I slept and am able to think and function again.  Rudy is currently not nauseous or in pain.    He has better, longer acting meds for both issues and right now they are working like a charm.  His esophagus issue seems to be getting better.  He has an appointment scheduled to get that checked just in case.  If there is a problem, there are things they can do.

The pain meds are some that are fairly addictive, but it's hoped that he won't need them long - maybe a week at most????  Possibly less.   We hope the chemo (HE DID HAVE CHEMO YESTERDAY!!! :-D ) and targeted radiation will knock the tumor down fast and get it off that nerve.  From what I've seen so far, the pain meds don't seem to make him too loopy.  He seems like himself, just maybe a tad more cheerful.  The cheerful might be more of a result of the lack of pain and nausea.  That's certainly reason enough!  I hope the cheerful effect lasts a long time.

This was me yesterday. 

We'll meet with pain management again next week.  They may even be able to  go in and deaden the nerve to the annoying tumor so that even if it does expand again, it won't make him so miserable.

Yesterday, Terri talked a little more about the immunotherapy.   Rudy will have another scan in 3 weeks to see how he's responding to the current chemo - the Carboplatin-Gemzar regimen.  If it's not a big success, then we'll look at switching to immunotherapy.  That treatment is in the last phases of trial and it's been amazingly successful on many types of cancer.  Rudy's type of cancer is one it's particularly good with.

Maybe immunotherapy will replace chemo one day.

Rudy doesn't seem to be cut out for chemo, so we're really hoping he's being led to immunotherapy for a reason.  We'd love to be one of their success stories!

Birthday Rollercoaster

Apparently, Advil on an empty stomach leads to major trouble for Rudy.  He dealt with unceasing nausea from 2am to around 9am.  At CTCA, they gave him an IV mix that dealt with pain, nausea and fluid loss and now he is almost back to normal.  He's a little nervous about eating yet, but hopefully, he'll be back on track as the day goes on.  His sister, Nancy, baked him a chocolate cake with her famous homemade icing.  Surely he'll be able to sample that sometime later today.  It's one of his favorites.

We're home now and both of us are wiped out.  We'll be turning off the phones and chillin' out for a while.

GOOD NEWS - they did his lab work while at CTCA today and he's on for chemo!!!!  I had the word definitely in that sentence, then took it out.  It seemed like pushing our luck.  We've learned that things can change fast.  One minute we're up.  The next we're down.  I never did care for roller coasters.  There's a movie I see listed often, called The Magic of Ordinary Days.  That title grabbed my attention and I can't hardly stop thinking about it.  We really miss ordinary days.  I know I'm rambling, but I'm so tired that I'm not even going to go back and edit.

CTCA took great care of us, as usual.  Tiffany was our nurse today.  This is our third time with her and she feels like family.  We also had a physicians assistant named Brandy, who was fabulous.  We're becoming close to so many people there.  Daniel, one of the valets, is a real sweetheart.  He took care of us today, too.  Brooke, from Dr. Thompson's office, spotted us near the cafeteria and bolted over to check on how Rudy was doing.  She let us know what all they were doing from Dr. Thompson's office.  Everyone coordinates so well from department to department.  We know full well how rare this is.

My point is, our path is not smooth.  Our journey is not easy.   But having so many wonderful people giving us such love and support along the way makes it bearable.

I'm sure I'm forgetting some details, but it's all I can write for now.  Rudy is already asleep.

Everyone - thank you for your prayers and love!  Hopefully, the rest of his birthday will be nice.

Nausea Solved - Low Potassium

Lesson for the week: If you have an extended bout of vomiting or diarrhea, make sure to replenish those electrolytes - particularly the potassium!

It's quite a conundrum - Vomiting can cause loss of potassium.  Low potassium can cause nausea.  Oral potassium supplements can cause gastric distress.

Rudy was given fluids with potassium Tuesday and within MINUTES, he found relief.  Apparently, the steroid was out of his system, but his potassium had dipped so low that he was continuing to be nauseous and he kept vomiting up anything he tried to eat or drink.

Once the potassium was in, he felt so much better... EXCEPT --- he had thrown up so many times that his back and stomach muscles were killing him.     So after, the fluids and potassium, they gave him some happy juice thru IV.  I can't remember what it was, but it looked like fun.  It didn't make him loopy, but it made him loads of fun.  He was entertaining everybody!  He continued entertaining me well into the evening.  He was so happy to feel good.

We had a really fun nurse.  Her name was Brooke and she was hilarious and cute as a button.  She's expecting her first child in a few months.  We're hoping to see her again when Rudy goes back next week.

Wednesday morning, the happy juice was wearing off and the soreness started returning.  I gave him a long massage and he planned to just lay around and recover.  He acted like he was OK (because he didn't want to worry me), so I took off to run a million errands.  I was halfway through when he called and said the pain was horrible - a 10 on the 1 to 10 scale.  He has never said that.  Rudy is generally tough as nails. I flew over to CTCA and my parents, who live right next door, drove Rudy over.  I went to Dr. Thompson's office and Brooke (not the nurse from Tuesday) set everything up for Rudy to get checked into the Quality of Life Department again.  We feel like we know many of the people who work in that department now.  They are all very nice, but boy, the place was hoppin' last night.  Apparently, there were a lot of emergencies all day and all night.  Everyone looked worn out, but still managed to be super nice and happy to be helping people.  We had yet another standout nurse - Heidi.  CTCA really manages to get the best staff!!!

Rudy got some more happy juice and they set up an appointment with pain management for this morning.  If Rudy's pain was going to continue, we'd need to find some other option besides happy juice.  The crazy thing, when he got up this morning, he kept waiting for the happy juice to wear off and the pain to come back.  We thought it might be a little better, but it was MUCH better.  He can still feel where it hurt, but it's nothing that warrants any kind of pain meds at all.  If you'd seen him yesterday, you'd be as surprised as we are at the improvement.

We've had lots of family help and support and love this week.  Linda and Nancy have dashed over for every appointment.  They helped with picking things up. Carl and Linda brought Rudy chair pads that heat up, heated blankets that plug up into the car, Naproxen for me (my TMJ chose this week to flare up big time), and more.  We've had lots of calls and emails and offers of help, too.  Our niece Carly and her husband Evan even managed to send flowers even though Carly's on a fun trip in Hong Kong with a group of her friends.  Evan stayed home and did a great job getting the flowers.

Carly is all the way on the right.  ♥

We have been on a crazy rollercoaster for pretty much the last week.  We got home around 11pm or so last night.  Our pain management appointment was at 8:15 this morning.  When we got home, we both crashed.  Absolutely crashed.  I think we woke up around 3 pm.  We feel human again.

This whole cancer journey is full of surprises and things that seem to make no sense at all.  Last night, in infusion, they gave him the first dose of happy juice and then we needed to wait a bit to talk more to the doctor and get a second dose of happy juice.  Rudy was no longer in pain thanks to dose number one.    There were many emergencies being dealt with all around us, but we were fine.  We sat in the room and talked and talked and as crazy as it sounds, we were happy and had a really nice evening.

Back to CTCA

Early this morning, we went back over to CTCA.  Rudy wasn't throwing up as often, but was still nauseous and feeling like he might throw up at any moment.  Also, his stomach was hurting from the last few days of being sick. He looked pretty bad.

Today, we had a wonderful doctor who took things a little further.  Fluids for dehydration and Zofran for anti-nausea are what most start with.  What comes after those two varies.  Dr. Blake gave Rudy several things that addressed the torn up stomach.

Dr. Blake is a professor at Morehouse.  He must be one heck of a professor.  He explained the stomach issues better than anyone I've ever heard.  Best of all, he gave Rudy meds that, so far, have helped more than anything anyone has done for him during these bouts with nausea.

Two different times,  we mentioned how much we liked Dr. Blake.  Both times, with two different nurses, they lit up and agreed and then remarked with great expression that he was also incredibly smart.  He's the best kind of smart.  He can explain things in simple terms and we could tell that he truly cared.

Dr. Blake was very attentive, too.  We saw him so many times that I completely lost count.  He checked on Rudy often and discussed every single action taken.

One more surprising thing -   Rudy had lab work done both Saturday and again today.  The platelets were up in the 40's on Saturday and they were 68 today.  Hurrah!  Despite being sick, his blood is recovering!

I sure hope that's all the excitement we'll have for this week.  Rudy is sound asleep right now and I think I'm going to crash soon myself.  I'm so tired that I feel a bit goofy.  If there are typos and errors throughout this post, I hope you'll pardon me.  :-D

PS - Linda and Nancy were with us most of today.  They come to as many meetings as they can.  Today, they also picked up prescriptions and made a stop by the grocery store to pick up a few things that Rudy will be able to handle once he's ready for solid foods.  I'll never be able to thank them enough for all they have done.  ♥

Nausea Continues

Valentine's Day wasn't all that sweet.  We spent a good part of yesterday at CTCA.  Rudy was dehydrated so they gave him fluids.  He felt better for a few hours, but the nausea and vomiting returned during the night.

This was a deja vu experience, except that CTCA addressed the issues much better.  With the previous episode, no Piedmont doctor saw Rudy even though he went to their office 4 days in one week for fluids due to prolonged vomiting.  Not once.  We felt abandoned.

This time, a doctor saw him right away.  He wasn't told to wait til normal office hours and then call.  We went right in on a Saturday.

There's a chance he may have to go back tonight.  We've been hovering all day.  He's still super nauseous and threw up several times this morning.  We talked to his care manager and she gave us a few suggestions.  Rudy agreed that if he threw up one more time, we'd go back over.  So far, he hasn't thrown up, but he has felt like he might every moment.  He's miserable.

I may over-ride our agreement and insist he go back over.  The amazing thing - even if we decide to go at midnight, CTCA will be ready for us.

ALSO -

Do you believe in more options
for cancer patients in Georgia?

Please go to this link and help 

make a change for Georgia residents -

http://www.cancercenter.com/georgia-patients-first/

CTCA is trying to get the law changed that limits the number of Georgia patients they can treat.  Rudy wanted to switch over in November, but had to wait til December because the Georgia quota had been met.  I have heard of some people who tried to get in during busier months and the waiting list was so long, they gave up.  I just don't think that's right and neither does CTCA.  People deserve a CHOICE.  When fighting cancer, a patient should be able to choose where they are treated.  They shouldn't be shut off because of a stupid quota meant to give other local hospitals more patients.  If other hospitals want more patients to choose them, they need to earn that choice, just like any other business.  They need to work hard to take care of patients and treat them well and help them feel truly supported in their struggle.  A business that doesn't put their customers first, loses their customers.

Getting this law changed could have a big impact aside from allowing patients a choice.  If other hospitals felt their patient numbers were dwindling because to the added competition, they'd likely start working harder.  Maybe they'd take a close look at all the things successful hospitals, like CTCA, do that makes patients so happy.  It's not that they promise better odds.  It's all about how much more they seem to care and how everything in the facility is designed to make a huge life challenge as comfortable as it possibly can be.  Every single patient we've met, regardless of their prognosis,  feels blessed to be at CTCA.  It would be really nice if all hospitals and medical facilities treated their patients so well.

Sick Again - Steroids

Rudy started a new prescription for steroids today.  They have been giving him this same steroid thru IV with his chemo and he has been able to tolerate it that way just fine.

This one is milder than the one that made him so sick after his rash.  We had hoped it would work without side effects, but it didn't.

He's been sick as a dog all day.  He's taking two anti nausea medications, but is having trouble keeping those down long enough for them to help.

Prayers, please.

Happy Dance - No Nausea

We're doing the happy dance! Rudy is weak and tired, but he's still not nauseas!!!! The day's not over and I'm not ready to completely declare us out of the woods, but he was in pretty bad shape by this time after Round 1.

He was INCREDIBLY tired yesterday due mostly to the way-to-long day Thursday. He's just gotten up from a long nap and he looks relatively perky right now. Wahoo! Thank you, Dr. Thompson!!! Update: He's decided to go for a really short ride in his hotrod.

Preventing Nausea in Chemo Round 2

Round 1 of chemo for Rudy was HORRIBLE!   He vomited for 4 days straight. Several things will be different about Chemo Round 2 and hopefully, the severe vomiting will be avoided.  That is the side effect that makes Rudy most nervous.

The first change - we are switching from Paclitaxel to Abraxane, which a a protein bound form of Paclitaxel.  This form is easier to "stomach".  The Abraxane will be taken in smaller doses every week, rather than a huge dose every 3rd week. That, too, may make it easier to tolerate.

Another difference is that Rudy is no longer on any pain medications.  Fentanyl was started the same day as Round 1 of chemo.  If it was a main culprit in the after-chemo vomiting, then we don't have to worry about that one on this round.

There will be some substantial anti-nausea meds given the day of chemo.  An anti-nausea med was used with Round 1 as well, but it didn't work against whatever thing Rudy was reacting to.  Since two things are being changed that could have been the cause of the nausea in the first place, hopefully, the anti nausea IV will not fail this time.

One other difference will be the medications used to treat any nausea that does occur.  When Rudy was having such a hard time after the first round, he was never seen by a doctor during any of the following days that we kept returning for fluids.  The nurses were left guessing and did the best they could.  They prescribed this and that and at one point he was taking 4 different nausea medications at one time and there were others previously tried still in his system. Two were oral, One was a patch.  Another was a cream.  We were told they each worked in different ways.  Their reasoning was that the combination would attack the nausea from many different angles.  That sounded good to us, so we followed instructions, desperate to do anything we could to help end the vomiting.

Dr. Thompson and her assistant, Stephanie, looked fairly incredulous about all of the meds he was taking for nausea.  They said that taking all of those together could have actually worked against him and prolonged the vomiting.  Hopefully, the preventative things being done will keep us from ever having to deal with uncontrolled vomiting again.

Rash and Medrol - Sick Again

Rudy has a rash on legs, arms, torso – This started Friday, Nov 28 or Saturday 29th.

By Monday, Dec 1st, the rash is getting worse.  Tried several creams, Benadryl, aloe vera, Eucerin, Aveeno bath...   Nothing is working. Other than rash, he’s feeling pretty good.  A little weak, but decent.

Tues, Dec 2 at 9:30 - 2 week appt with Anne (nurse at Dr Assikis).  She saw rash and prescribed steroids - Methylprednisolone Tablets (Medrol), 4mg dosepak.  He has a 5 day "dosepak" of the Medrol.   The first 2 days are 6 pills, the next 3 days are 3 pills each.  Also – OTC Pepcid AC and Claritin.  

Rudy took all of day 1 meds (as Anne instructed) starting around noon. Rudy felt good all day.  Was able to be a bit active all day – after dr appt, went to Target, Honey Baked ham.  Went home, took a nap, then went back out and picked up new car.  


Last night he could not sleep!   Had bad night sweats – 3 or 4 times.

This am he took the before breakfast dose and things went downhill pretty fast.  He's been throwing up all morning.  We've put the nausea ear patch back on and he's rubbed the nausea cream on his wrists.  He's trying to sip gatorade and forcing toast or crackers down.

Apparently nausea is a common side effect of Medrol.  So they give it to a man who is obviously prone to nausea?????  *&^%$#@!

I have contacted our "nurse navigator" at CTCA and they are trying to see if there's any way they can get him in sooner.  We're on standby.  There's a chance, they may even be able to see him tomorrow.

He felt sooooo good yesterday.  The rash was annoying, but he could deal with that.  Today, he said he feels about as bad as he did last week.

He was hoping to be riding around in his new car today.  :-(

TODAY - Wed, Dec 3

Woke up feeling pretty good, but very tired from restless night

Took the pre-breakfast dose of Medrol and it went downhill from there.  Episodes of vomiting – twice before 10:30am

10:20am - Put on Transderm ear patch and rubbed Prometh on wrists – both for nausea.

Vomited 2 more times before noon

4pm – tried to drink ginger ale.  Vomited again. He said he was tasting medicine.  We took the ear patch back off in case he was reacting to that.

5:30 – started coughing and vomited again

Took a shower and felt relief.  Got out and started feeling bad again.  Waiting a few minutes then got back in the shower.


Night sweats

More Fluids

Vomiting continues this morning.  Diarrhea, too.

Rudy is pumped full of fluids again - 3rd day in a row.

We still haven't seen a doctor - just nurses.  When we went in, we were hoping he'd be admitted to the hospital.  Surely, the over-the-top side effects are about over.

He was nauseous all day but is beginning to eat just a tad – things like jello.

We're really hopeful that tomorrow we won't need a trip to the ER for fluids and that we can stay home and sleep. That would be something to be truly thankful for!

We'll really miss spending the day with our family, but we know we'll see them all soon. Meanwhile, everyone have a fabulous Thanksgiving and take the time to truly appreciate how many wonderful people you have in your life.

Fluids day 2

Just after midnight another bout of vomiting.

It was time for a Zofran, but he said he didn't want to take it anymore because it made him sick

5am another bout of vomiting.  At what point does he get put in the hospital?

6:45am another bout of vomiting

Spent day in infusion room again,  More saline – 1 ½ bags.   Steroid.  Pepcid AC thru IV and two bags of Ativan, which made him talk absolute nonsense.  He thought he was installing glass in the infusion room.

He came home and slept and talked gibberish for a while.  Then he at a tiny bit of jello.  He vomited shortly after – around 6:30.  He sipped water a little while later then vomited again.

Today, some wondered if the vomiting was being caused by the Fentanyl 50mcg.  No one ever really did more than wonder because he put the patch on Friday around 1 and didn’t begin vomiting til early Sunday morning.  

I looked up Fentanyl and vomiting  this evening and from what I read, it’s a distinct possibility that’s what’s causing the major vomiting.  I called the after-hours number and Dr Menninberger said it would be fine to remove the patch and we’d soon know if that’s what was causing the vomiting.  I also wonder – the patch really took care of the pain, but was the 50 too strong to start off with?

Removed patch at 11pm

Vomited 11:20.  It'll take 12 or so hours for the Fentanyl to get out of his system.

Fluids Day 1

Rudy slept for a while overnight, but as soon as he got up around 4am, he felt nauseous. He took a nausea pill and soon after had a horrible bout of vomiting. We're going to get fluids this morning. I'm hoping they will give him anti-nausea stuff thru the IV as well. He feels terrible.

4:45am - He's still getting sick and now having diarrhea as well. He feels terrible.  Said he feels like he’s running a fever but doesn't want a thermometer in his mouth

7am - I called the on-call service again. I asked if we could just be at the office when they opened at 8. She said no - we have to call at 8 and make an appointment. ^%$#@!  Hopefully, they'll see him fast. I'm ready to go.

I thought about just taking him to emergency, but that process would likely take ages. In the end it may be faster and more efficient to call the office.

We really feel left to fend for ourselves. My advice to anyone having chemo for the first time - do it towards the beginning of the week so if trouble hits, you'll be able to get help from the office without waiting over a weekend.

The on-call PA was nice this morning. I don't want to make her out to be cold and heartless. She said they would likely make a number of adjustments in chemo 2 and that chemo side effects should not be this bad.

7:30am – try another Zofran – it dissolves in mouth – easier to do than swallowing a pill with water, which would likely bring on another attack of vomiting

After 8 - Went to Dr’s office this am.  Had IV fluids and Phenergen and Attavan thru IV.  He vomited again around noon while getting fluids.

Came home with 2 new Rx for nausea – Prometh/PLO wrist gel and Transderm-Scop ear patch.

He's a tiny bit better after the fluids. I think his color is better, but he still says he feels awful and he's weak as can be. He got fluids, nausea meds thru IV and now has two additional nausea meds that are not oral. One is a patch. The other a cream. We started those around 1pm. They said each of the drugs approaches nausea from a different angle. Hopefully, we have all the angles covered now.

Went 9+ hours without getting sick but sometime in the evening vomiting  started again

ALSO - if anyone needs to talk to me over the next few days, text, message or email me and I WILL CALL YOU soon. I'd like to limit incoming phone calls if possible to give Rudy a chance to rest undisturbed. He's exhausted.

Chemo: Anti-Nausea Menu

Rudy woke up 3am and vomited soon after.  

Started Zofran (anti-nausea) at 3:50am.  

Vomited again around 8am.  

Thought the nausea might be over. He had a big breakfast (bacon, eggs, rolls) around 9:30 or 10. I didn't think that was a good idea, but it's what he wanted. He slept a long time. 

Vomited 1:50pm.  Tried Zofran again.

Vomited 3:30.  Called the after-hours number and talked to the on-call physician's assistant.  

Rudy now has a 2nd nausea med to take – promethazine (taken around 4:10pm).  My mom had this from her cancer treatment a few years ago and the PA said that was what she would prescribe so it’s fine to take it, even though it’s old.  The PA advised sticking to liquids for the next 24 hours - like with a stomach flu. She said taking him to ER for fluids was not necessary today, but if the vomiting continued thru tomorrow, I should call the office. The PA also said he'll likely need stronger nausea IV meds with chemo round 2. Plus, we'll be sure to start taking the pill form BEFORE he gets queasy.  

He had another bad bout of vomiting around 6pm.  I went out and picked up Sea Bands (acupressure wrist bands). Found them at a drug store 20 minutes away!  Funny - while there the pharmacist got a phone call asking if they carried Sea Bands.  It turns out, it was Linda calling.  She was trying to help me locate some.

The nausea and vomiting is unreal.  I know we'll get this in hand, so I just have to keep telling myself that.  But it sure is hard watching him suffer.  It's horrible and I feel helpless.  There's nothing I can do to help.  Surely next time will be better.  I'm documenting everything so I can hand it all over to CTCA for Round 2.  

The medical oncology community try real hard to make sure patients don't go thru this awful vomiting anymore.  I guess the first round is often a gamble.  I know I said this before - 1st time chemo patients should not have their chemo on a Friday and be left adrift over a weekend (when offices are closed).

I'm putting out an all-call in case anyone can think of other ideas I may be missing.

Link to Post

Next time, he'll take the anti-nausea stuff BEFORE it hits.  Meanwhile, I'm trying to get organized for dealing with the appetite and tummy issues.

We've already been dealing with loss of appetite and nausea for a week or two because of the pain meds. Now, the pain meds have changed, but the chemo nausea is kicking in.  At least we had one good day between.

For chemo patients experiencing nausea and/or vomiting, it's recommended to:

• eat more often in smaller quantities
• avoid things that are greasy or spicy
• eat with plastic utensils if there's a metallic taste
• try things that are cold if smells are the problem

Rudy shot that out the window this morning and had me fix him a full meal - bacon, eggs, and toast.   That's certainly not what's recommended, but he wasn't in the mood for advice.    It'll be a miracle if that stays down.  

When he knows he needs to eat, he hates me to start naming things.  But I can tell he's frustrated because he can't think of anything to have. My solution is to have a menu of snack or mini-meal ideas. I've started working on it.   * These are not the high-nutrition things I'd love to see him eat the majority of the time.  These are "get something on your stomach that won't make you nauseous"  things.  

Below is the list I have so far. If you can think of anything else to add to the list, please let me know!  * I am updating this list every so often with suggestions from others.

Fruit

• Banana (room temp OR FROZEN)
• Apple
• Applesauce

Breakfast

• Toast
• Eggs
• Roll + Apple Butter
• Pancakes
• Cereal
• Oatmeal
• Grits

Snacks

• Yogurt
• Popsicle
• Crackers
• Orange Sherbet
• Pudding

Drinks

• Gingerade
• Tea
• Water
• Smoothie
• ENSURE
• Instant Breakfast
• Boathouse Farms Green Goodness

Anti Nausea Candy

• peppermint
• lemon drops
• 
  

MORE

• Cornbread and Buttermilk
• Soup or broth
• Rice
• Baked Potato
• Pasta (plain or with a little broth)

Additional Resources

Link to Recipe