Looking for some advice

Robyn and Ron
Getting too much sleep, which for me was 4-hours, is not a good thing with H&N because of the mucous. Only times I got sick were on account of this. Compazine is what was prescribed for me, and it did okay the few times I needed it. Resting on my recliner was better for me than laying in my bed. Others have said the same.

Would advise you to consider others who went thru Ron's regime, and got too sick to have the last Cisplatin session. Know others, here, found themselves in that boat. If he's too sick to get the last Cisplatin, then he's too sick to do it. Simple as that. Put your foot down. My regime was different, so it is not of my experience. I got introduced to Morph at the start of week #2, and was too sick for any rads in weeks #5 and 6, but my delivery was different. As for the mouth, I only used Magic Mouthwash, but realize I was also on the Morph.

As for the PEG- there were several weeks I struggled to just get two cans of the 2.0 Jevity into me, Robyn. Ice and sipping water helped a little. I was told I needed to get four cans of Jevity/day, but I did what I could. And that's two years ago, Robyn. It may seem like a terrible time, and it is- but it only lasts awhile. That said, be advised that if Ron runs a fever of 101 for awhile, and it doesn't dip down closer to 100- get thee to an ER.

Please keep us updated.

kcass

Ron49 said:

Thank you for the info. He
Thank you for the info. He is supposed to take in 6 cans per day but today nothing but I am okay with that for now. He did get almost a bottle of water in before sleeping and I was thrilled with that. I have not seen many post about or seen much written about Neupogen and wonder if that is causing some of his stomach upset. This drug is supposed to help his white cell count which after first chemo was really low. The 2nd chemo was postponed 2x due to low white cell count.

I am trying to focus on the fact that this is only temporary but it is for us the most difficult thing we have ever been through. I will watch his temp.
I will ask about the Compazine drug. We are willing to try anything.
Thanks again
Robyn

Don't apologize..
Ron & Robyn,

Please don't apologize. Now is the time to be on here asking questions. Sorry Ron is having such a rough go of it. And yes these treatments can and do suck! Stick it out. The results are worth it. Not getting food down, getting sick, all sounds very similar to what I went thru about that time frame and yes it was mean, but the end result is what you're looking for and there are a lot of success stories here, including me (11 months post treatments and doing well).

To answer some of your questions, to help with nausea I used the prescribed drugs that came with the Cisplatin. They worked fairly well for me. I did supplement that with flat ginger ale (others have suggest making your own tea from fresh ginger, which sounds a little bit healthier). Hope others will chime in on what they used for perscriptions during this time.

My throwing up lasted a few weeks and was when I lost a lot of weight. You are right, getting food and hydration in is very important. Keep trying and don't hesitate to go in to get hydrated at your treatment facility. The mucous casued a lot of my throwing up. One thing that did help me during this time was Caphosol, perscription and expensive, but this did help me keep the thick stuff at bay for awhile and at that point I tried timing it to get in some food so I wouldn't throw it back up immediately.

I received a shot (forget the name) the day after Cisplatin for the white blood cell count. I am not familiar with Neupogen though.

I really hate to say this, but more than likely it will get worse. My bad times were week 5-7 of treatments and then the following 2 weeks after treatment. But IT WILL improve. Hang in there! I know from talking to my wife, this was the bad time for her also, cause as good as she was, there was not much she could do to alleviate some of the issues. So take care of yourself also and just be there for him.

I received 7 weeks of rads and was scheduled for 3 treatments of Cisplatin. I am one of the ones Kent was reffering to as my doc suspended my last treatment of Cisplatin (substituted Erbitux for the last 2 weeks), but mine was due to loss of hearing caused by Cisplatin. But I agree with Kent, be your own advocate. At least on my treatments, chemo was about 10% of the total treatment with the first 2 doses counting for about 90% of the chemo effect (this from my ONC). In other words the last chemo is good if you can get it, but the positive effects are minimal compared to the rest of the treatments.

My last bit of advice on eating is try to establish a pattern where the nausea is not as bad and when the mucous isn't either and time to get in as many calories as you can at that time.

Sorry for so long a post, but I know how I felt during that stretch and I definitely relate.

Nothing but positive thoughts going out to Ron!!!

Greg

Keeping food in
Hang in there. It is tough, but worth it. To keep food down I put it in very slowly.
I spent a lot of my day hooked to the feeding bag, but it helped.

Nausea
What worked best for me was fennel tea. I used organic fennel seeds and put about 1 tablespoon in a 12 oz. coffee cup. Pour boiling water over, cover and let sit for 25 minutes. Strain out the seeds and drink. Very settling. Ginger tea worked well also but a little less so. I also used medicinal marijuana which is prescribed here in California. There was nothing that worked as fast or as effectively as the marijuana. It has the added benefit of stimulating the appetite (munchies). There is the high that goes with it though that can be uncomfortable for some. I recommend Pink Floyd during those times.
Sorry that you're going through the rough bit now. You will get through it. It could get a bit more uncomfortable until about 4 weeks after treatment ends and then it really starts to get better. Looking forward to hearing about that from you then.

Bob

Dragons7-7-2010 said:

Robyn & Ron,
This is the
Robyn & Ron,

This is the place to come for help so never apologize for posting. Your questions alone will prompt ohers to answer and that in itself is a way to give back.

I did not have a Peg as I battled through it all but I did have horrific mouth sores from teh cisplatin and cetuximab (chemo drug I had concurrent with radiation). But hopefully, my suggestions help.

I would see if they can give you liquid Zofran if you have the pills. I did mouth rinses with diet flat ginger ale to break up mucous along with gargle with salt water and baking soda rinse.

I also got an RX for Caphosol which helped me greatly. BTW see my separage post on Caphosol as it can be pricey and some insurance does not cover it.

See if you can get Ensure Enlive as it is a non-diary nutrition supplement and maybe it can be fed through PEG and help reduce musous.

Prayers going to to you both that Ron's mucous gets better. And prayers for you as his caregiver. He is blessed to have a caregiver like you as I did this alone without a regular caregiver and it was tough being single and far from my family..


Eileen

You can take Reglan or
You can take Reglan or metacloprimide with a peg. I had it. I had to stop taking it because I was having some side effects with it.

Dragons7-7-2010 said:

Robyn & Ron,
This is the
Robyn & Ron,

This is the place to come for help so never apologize for posting. Your questions alone will prompt ohers to answer and that in itself is a way to give back.

I did not have a Peg as I battled through it all but I did have horrific mouth sores from teh cisplatin and cetuximab (chemo drug I had concurrent with radiation). But hopefully, my suggestions help.

I would see if they can give you liquid Zofran if you have the pills. I did mouth rinses with diet flat ginger ale to break up mucous along with gargle with salt water and baking soda rinse.

I also got an RX for Caphosol which helped me greatly. BTW see my separage post on Caphosol as it can be pricey and some insurance does not cover it.

See if you can get Ensure Enlive as it is a non-diary nutrition supplement and maybe it can be fed through PEG and help reduce musous.

Prayers going to to you both that Ron's mucous gets better. And prayers for you as his caregiver. He is blessed to have a caregiver like you as I did this alone without a regular caregiver and it was tough being single and far from my family..


Eileen

Cetuximab
I just had a biopsy, they couldn't remove the tumor and I am looking at a recommendation of radiation and chemo (cisplatin). I also have two suspect nodes.

I am doing my research on followup treatments and alternative to the standard recommendation.

What can you tell me about Cetuximab? Was it added to the regular chemo/rad treatment? From what I read it is a monoclonal antibody that can be used with radiation. The trial showed significant increase in survival rates as compared to just radiation.

Do you think it was worth adding this. I guess it would be hard to say where the mouth sores came from since you had all three: radiation, cisplatin and cetuximab.

Where did you get your treatment? What are your long term side effects?

Thanks, I don't have much time to find the right treatment for me.

DrMary said:

Drug names
Ondasetron is Zofran and Compazine is prochlorperazine (the brand names are easier to say, but some doctors only know the generic name of some). The patch you mention is Granisetron - similar to Zofran; both are preventive rather than after-the-fact.

My brother-in-law the doctor mentioned that finding the right anti-nausea drug is still mostly an art - there is no test to tell which person will respond to which drug. In our case, it took weeks to work it out (during which we heard a lot of "well, one of those really should be working"). That was not fun. We lost track of how many times Doug threw up, after about 8 times per day for a week, you don't really want to know. On the plus side, he thought that throwing up stretched his throat. . .

Robyn and Ron
Have Ron get a prescriptin for a suction machine that he can use at home. I had the mucous bad and when I got the machine, my vomiting stopped !!! Completely stopped. The mucous is cleared in his mouth and doesn't get in to his stomach. Try it please, it will help.
I agree with John, get him on IV drip for 2 quarts of Saline a day. I did this for 4 weeks to keep hydrated.
Reading your post was like seeing myself all over again. I had the same treatment as Ron and got just as sick. I can only tell you to keep the faith. IT WILL GET BETTER !!! I am now about 12 months post treatment and am doing well. I too had a PEG tube and am glad I did. He'll probably have it for a few months more. I did, and so did most of the folks here.
Trust me Robyn, tell Ron it will get better, just very slow.
I hope this post helps you.
Let me know please. I'd like to help you in any way I can,
Steve

Ron49 said:

Thanks for the post Steve it
Thanks for the post Steve it definitely helps!!! I just read the new replys to Ron and I know he puts lots of weight on all of your words as he knows you have all walked this path. We ended up in emergency today and just got home. The doctor was not an Oncologist and could not give us any info about the mucous. He feels the dairy based formula is part of Ron's problem. He also gave Ron the prilosec type medication in a liquid form and the zofran in a pill that is absorbed under your tongue. My daughter is trying to get some type of non dairy supplement and I am going to contact the Nutrionist and Home Health to get the machine you are talking about. Sorry this brings back bad memories for you but we so appreciate you lettin us know you are 12 months out. Congratulations, it is very inspirational to hear these stories.

Thanks again!
We will keep you posted
Robyn & Ron

Robyn and Ron
So sorry to hear how difficult things are for Ron. I know it can feel like a never ending nightmare. Mark started on Cisplatin, but like Greg, it was pulled because of hearing loss, and he finished with Carboplatin and Taxol. The first dose of Cisplatin was very rough on him and it was when I worried the most during his treatment.
I have two thoughts, not yet mentioned: Emend was the name of the super drug Mark was given post Cisplatin. It was a highly coveted drug and very expensive. We were fortunate that Mark's insurance covered it. He did not need it when the chemo drug changed.
The second thought, is push liquids very slowly in his PEG. Small doses frequently. His stomach may be able to handle small amounts.
Hang in there. Cross every day off the calendar and acknowledge the progress. The days do go by one by one...sometimes VERY slowly.
Thoughts are with you both,
Kim