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Looking for some advice

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Sorry it has been a while however life has been a bit hellish and we don't feel like we should post if we can't give back somehow. First of all this is an incredibly awful way to get better and the treatment sucks!

This is Robyn, Rons wife, I am posting as Ron is too sick. He is currently in the middle of treatment. He just finished 5 weeks of IMRT radiation with 2 more weeks to go and had his 2nd round of cisplatin last Monday, he will get his 3rd round on the 29th of March. He is no longer eating or drinking by mouth and taking 100% of food and meds through the peg tube. In addition to the chemo on Monday he has had shots of neupogen to help his white cell count each day for the last 4 days. His chief complaint is the mucous and got up first thing this morning and was sick to his stomach, it was all mucous. He tried feeding and taking the zofran med for nausea but proceeded to get sick immediately. Any ideas on how to settle his stomach? He needs hydration and food. We are afraid if he puts anything down he is going to lose it. I have been on hold with the online nurse for nearly an hour.

Ron had his monthly head and neck appt yesterday as well as radiation and both docs said the worst days are ahead. Could this be possible? I can't imagine how it can be much worse than this.

We are using the baking soda salt mixture and that seems to help. We have read all of the info you all have posted and much of it has been very helpful. There does not seem to be any remedy for the mucous.

Any info or suggestions would be greatly appreciated.

Robyn & Ron

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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's picture
Ron49
Posts: 91
Joined: Dec 2010

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

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

PM, Robyn.

kcass

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

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

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

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.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Never believe you should not post here, you are always welcome. And certainly everyone here can relate to how much this treatment does suck. I can't help with the severe mucous problem, but wanted to lend some moral support to you and Ron. My worst days were the last week of treatment and the 1st week post. And then it will get better, slowly but surely. Stay strong. Cheers

Jimbo

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

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

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

lizziek's picture
lizziek
Posts: 27
Joined: Feb 2011

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.

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Lizzie, My wife did Cetuximab along with the other chemo drugs (Cisplatin, Taxotere and 5FU ) and she tolerated it very well. It seemed not to make her sick at all and I think it is a very good drug. She did it with the other drugs the 1st week then the 2nd week she did just Cetuximab by it self then she did nothing the 3rd week. Cetuximab only targets the cancer cells. Good luck with your treatments. Homer & Connie

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Three words...Hyration, Hydration, Hydration.....

If you don't stay hydrated, you're going to get sick, really sick, hospitilization sick.....

Like mentioned, if he cannot take fluids in, go get hydrated with IV fluids.

I didn't have Neuprogen, but I did have Neulasta which is similar. The only reactions I had to that were very sore achy bones, like a bad flu.... That came on a few days after the injections. I had an injection the first week after each chemo cycle (cisplatin, taxotere and 5FU)...three cycles (nine weeks), then concurrent weekly carboplatin and daily rads for 35 days.

I did have Emend for nausea during the three cycles, but then just Zofran after.

While getting daily rads, I had daily Amifostine injections immediately before rads. It was supposed to help eliminate or reduce the thick ropey phlegm (which it did), and regain salivary function, also I'm two years out and have regained probably 90%.

I used baking soda and hydrogen peroxide to rinse with several times a day.

Best,
John

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

R & R,

At this point in treatment I was in Hospital full time. You may wish to see if that is possible if he is in bad shape becasue he may need more support. He probably should be getting fluids by IV as said above by Dr Mary & John. They can also keep the anti-nausea meds going and monitor pain. I was well on with morphine ++ by that stage in very poor shape.

I did get daily sessions with a nebulizer which helped with the congestion and mucus. I also used a vege base supplement mixed with Rice milk for my PEG as the stuff you are using may contain Dairy protein which exacerbates the mucus. That may also be causing some of his nausea, but most likely the Chemo.

I used a strong nasal spray 10-15 minutes before going into Rads and a good rinse with Biotene mouth wash and then cough and hack as much as possible before laying down on the table.

You are in the rough patch now and that may last till a couple of weeks after treatments finish. It is a very difficult time, but keep in sight a brighter future as he can get through this make a full recovery. Watch for signs of depression during this phase and keep your Doctors on top of it. It's quite normal considering what he is going through. We've been there and we know.

You may also need to check his mask is not becoming too loose as that may affect the positioning during rads. The Rad Oncologist should be monitoring this but always best to ask the question.

Keep us briefed and you are alway welcome to ask for help. Ron will probably be back on this board soon helping people who are going into where he is now.

Regds
Scam

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

I also was given cisplacin. It is known for being particuarilly nasy. I was given 2 nausea drugs. First was a patch (weekly) SANCUSO TRANSDERMAL SYSTEM. The second was a suppository PHOCHLORERAZINE 25MG and a pill. Unfortunatly I don't know the name of that. These are both prescription...and must say I had barely any nausea. Hope that helps some. Rose

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Thanks to you all this is very helpful. I will call again the onco nurse this morning and ask about the things you all have suggested, the caphasol, the suction machine, non dairy formula, and anti nausea med suppository. So appreciate the advice u are all angels.
I will let you know how it goes
Thanks again
Robyn

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Robyn, I searched my med summaries and found the name of that pill I mentioned. ONDANSETRON HCL 8 MG This one was prescribed by my radiologist. The other two by the Oncologist. The patch was on 24/7...changed weekly. I took the pill daily and used the suppository when I got that funny feeling nausea was sneaking up on me. And it worked. NO_ONE should have to suffer. The drug co.s sometime will fight them (they are expensive) and my doc had to turn up the noise a little. so.. Give it a try. Worked for me. the best to you and hubby Rose

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

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. . .

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

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's picture
Ron49
Posts: 91
Joined: Dec 2010

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

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

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

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Thank you Kim, he just got sick again and he only tried to take in 4 ozs. I think you are right about it going in slow, that might help. His stomach does not want anything at this point so we may have to go super slow and maybe 1 oz at a time. He has had almost nothing for 2 days except what he got at ER. So incredibly scared. I feel so helpless, I am beyond tears at this point. Thank you so much for the thoughts. Hoping sunnier days are ahead sooner rather than later.

Robyn

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Best to get this corrected`tomorrow AM, if it's been two days. The IV drips will help. If he has a Port, maybe he could do that at home? Maybe they can do a test to pinpoint any specific problem in his stomach, if there is one. Gotta get the Nutritien into him, Robyn. Might need to demand to see a Dr., rather than a Nurse. I had to slam my fist down on a counter top on the first day of week #2 to let them know I was gonna see the rad Dr., or else, and that brought her into the room within 2 minutes. Do what you think you have to, and is probably legal, to get it done. They are the Drs. in charge of Ron's care, and it looks to this family like they're not doing their job.

Keep us updated ASAP.

kcass

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Sometimes even when you get in tons of fluids and nutrition you can still get dehydrated and have deficiencies anyway. I had to have fluids for the last three weeks. Your body is just so taxed and stressed.

Putting the food in very slowly can really make a difference. Plus I had to feed myself and do everything on my own. For a while there I was so sick and weak I could barely move. I should have gotten a pump earlier. I was so sick, I could not stop vomiting every time I put anything in my peg tube. I don't think they reacted quick enough even tho I was complaining to RO and nutrition team, finally, my really nice gastro doc suggested the pump and it worked. My nutritionist gave me a couple of gravity bags and they were ok, but the pump was better. I had to start very slow and only go with putting in one can over three hours. With the pump it was very easy. Pour all my cans in, set it and go to sleep. Alarm on the pump would go off and wake me up in the morning. I'd flush with fluids and disconnect.

With the pump I went from 87 to 97 pounds in a few months.

oopsydoopsy
Posts: 3
Joined: Feb 2011

Dear Robyn,

I understand completely what you've been thru and how horrible it is. During my treatment,, I visited ER more than 5 times due to hydration,, talk to Dr and have them give Ron IV drip everyday,, or have them give him nutritient food thru his port.

I have tried so many things and I found out that if you apply orajel (mix with water) enough to rinse your mouth so it felt numb,, and drink up whatever nutritient drinks (in my case,, Ensure works best for me,,) it helps me alot,, I know everything tasted like sandbox when you have radiation combined cisplatin,,

however,, it will get better,, tell ROn to hang in there and keep taking the medication for feeling nauseated consistent,, it won't work if he keeps changing it or not taking it constantly,, (give it try for at least 3 days).

My prayers goes with you and Ron

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Kent, sweet, and oops,
I put in messages and calls to everyone I can think of asking for something to help I think the pump and suction might help hopefully something will come of it this morning. Thanks for the suggestions they are so helpful and we would be lost without them
Robyn

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

My heart goes out to you!!! We've been down this road. Buzz was on the pump 24/7 initially. So you may have to go that route. The antinausea drugs can really help but you have to stay ahead of the nausea. Buzz received the Emend for three days each chemo cycle. I also gave him the Zofran preventatively. Once the nausea/vomiting starts, it is difficult to control. You can also alternate the Compazine and Zofran so he gets one or the other every three hours. Our oncologist told us not to use suppositories while receiving chemo. Maybe a risk of bleeding? Our oncologist also recommended omitting the last round of chemo so Buzz received two rounds instead of three. He was just too sick with each round and had to be hospitalized for a week each time. You might also ask for a home care nurse who can show you how to use machines and give you much needed support. Keep being the "squeaky wheel" so that you get the help you need. And we are all here for you! Karen

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Robyn, my Doc prescribed a medication called Reglan. It was a liquid that I put into my feeding tube bag, or direct injected from a syringe. I did this 3 times a day and it helped to pass all of the liquid nutrition through my system. Also make sure Ron is not taking too much feeding at one time. I had a horrible time with vomiting after feeding, and discovered I was using too much at one time.
Other than that, try to keep up with the anti nausea meds as best as you can. With regard's to the worst days are ahead, Ron may develop some burns on his skin where he is receiving radiation, and the same may go for the inside of the mouth.

Mike

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

My heart aches for your poor husband, the mucous is brutal during this time and it's just all as you said hellish. Thinking of you and your husband. *CYBER HUG*
-Kristyn

Larla's picture
Larla
Posts: 28
Joined: Sep 2010

To Ron and Robyn,
Sorry to hear about your hard time dealing with your treatment. I also had a horrible time with mucus.I often wished I could have a portable sink in my purse.I lost sixty pounds even though I had a Peg tube before treatment started.The jevity was to thick and my body rejected it depite repeated tries so they had me try Boost Breeze with protein powder mixed in it.I could keep this down much better.My oncologist also canceled my third round of Cisplatin because my body couldn't take it.My doctor also prescribed clotrimazole tablets to suck on to help with mucus.Most important to my feeling half human was hydration therapy.I was given IV fluids three times a week at the Cancer Center besides my family,faith and will to live hydration therapy was paramount to my body surviving the treatment.I finished my treatment September 2009 and am doing very well.I wish I could some how travel back in time and tell myself the mucus will resolve because at that time I felt like I would almost lose myself in it.So I will tell you, just know as hard as it is it will get better.Good luck with it all.
Laura

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Karen, Mike, Krystin, and Laura,

Thank you for the info. All so incredibly helpful. Went to radiation today and Ron has lost 9 lbs since Friday afternoon and is down to 171 or 25 lbs down total. Doc was shocked (so was I) and called onco nurse to have order placed immediately for pump. Also prescribed some pain meds and made sure there is a standing order for hydration. Got a call from onco nurse this afternoon and the suction machine and pump should come tomorrow. I am so relieved. Ron took in only about 16 oz today and all the anti nausea meds. He really is so much better than yesterday. He can't talk as his throat is so raw and filled with phlem and he is having a hard time hearing. But at least he is more stable than yesterday and I feel like the pump and suction will help tremendously. I can't thank you all enough as I would not have known to even ask and the Drs don't offer this stuff up front.

Robyn & Ron

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Glad you finally got the doc's attention! It seems they don't believe us when we call and think we are just "making a mountain out of a mole hill." So glad to hear Ron is a bit better. Hydration can really help people feel better. I am a former RN but on the two occasions I had to call doctors after hours, they blew me off. The next day Buzz had to be admitted to the hospital! So, keep calling them with your concerns. Chemo/radiation is really tough but there are ways to make it more tolerable. I look forward to hearing from you so I can pass along the wisdom I received from the survivors when we were going through treatment. Karen

Webhead68's picture
Webhead68
Posts: 3
Joined: Oct 2010

I know it's been said a million times above but hang in there. They told me I was supposed to put in 6 cans of Jevity a day and when I tried to put more than one in I was puking it back up. The hospital tells you that your supposed to put in 6 cans a day but if you have lost a lot of weight already, I got my PEG at about week 5 and lost about 30 lbs, your stomach isn't much bigger than an orange. I was lucky to get in one can at the beginning and used water through it as well. I got really dehydrated from not eating and drinking and thats why I went into the hospital to get the tube as well as IV for hydration.

As far as the mucous, Magic Mouthwash was the way to go and they gave me this thick very vile liquid to numb the throat. The Mouthwash was the trick to help with the sores in the mouth, the mucous and the raw throat. As much as it hurt I would force myself to spit out the mucous when I could and it seemed to go away a little.

I finished my treatments in September 2010 so if you guys want any more input feel free to ask away.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

How did today, Tuesday, go? Bunch of us are wondering, you know.

Was wondering when Ron got his PEG- before, or during treatment? Had mine for close to two weeks before treatment began, and really didn't need to use it for most of the first week, so my system had gotten used-to it a little. I am wondering if that might make a difference. I, too, would have been advised to use 6 cans of Jevity, if I used the 1.6 formula, but I used the 2.0- that is why only 4 cans for me. And though I was down to only 2 cans/day in the roughest times, that was more instinctual as to the why- I felt "full" enough without any more. Never did vomit-up the Jevity. Maybe it's just me and my C specifics, but I do wonder if there's an advantage to getting the PEG before treatment even begins.

Hope and Pray it was a better day, Ron. It do get rough, but you'll be okay.

kcass

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Today Ron is still pretty weak but was able to hold down 3 cans (we have isosource 8.5 ozs of lactose free formula 375 calories dietician recommended 6 per day). He only has 8 more rads to go. Finally feels like the end is in sight. All of you are correct the hydration and nutrients make such a difference. I noticed he was holding himself more upright today, what a difference a day can make. I am so incredibly proud of him. He is a soldier for sure! I know he feels so bad yet he managed to let me know when I was pushing him to eat more that if he vomited it would be on me :-). Made us both laugh and it is so good to see him smile a little.

Kent Ron got his peg before he started treatment but only a few days before. He got it on a Thursday and had his first treatment the next Tuesday chemo and rad. I would not recommend that as his body rejected the peg for the first couple of weeks. He did not stop eating or drinking by mouth until near the end of week 4. I am so glad you all have talked about quantity because I think the 3 cans will be good for now. The radiaologist was most concerned about wieght loss but I think with 3 cans and water he should be able to sustain his weight. The pump will help and it is supposed to come tomorrow.

You all are Angels!! I can't say thank you enough. I was really scared and did not know what to do and you have helped us so much!!

Robyn & Ron

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Robyn, I am sorry to hear Ron is having such a hard time right now. Everything is bad enough when all goes well. Connie finished her radiation treatments on March 17th and she was getting sick every morning about 7-10 days before that. She is still getting sick every morning mostly due to the thick mucous. I try to give her one can after the morning sickness has subsided and this seems to be working, if she feels like it then I will give her another can at this time. Connie also skipped her last chemo as she ended up in the hospital after her 2nd dose of induction chemo. Connie was scheduled for 9 weeks of chemo and then she started her radiation after all chemo was finished. I think Ron is doing chemo & radiation concurrently so their treatment is a little bit different. At first I blamed myself when she got sick in the morning because I thought I was giving the canned nutrition too fast so now I am taking it a lot slower. She has only been getting a hydration IV once a week so far but I leave that up to the radiation oncologist because they should know how badly she is dehydrated. Try to keep reminding Ron that he is getting closer to the end of treatment and talk about things you and he want to do when he is well. Ron is a fine person and so are you and I know this is very hard on you both. You are both a member of the family here now and never hesitate to come on this site to ask any questions on concerns that you may have on Ron's behalf. That's what this site is all about and the people here are special and want to help you & Ron get through this most difficult time. If you don't think Ron can tolerate more chemo then you may have to suspend any more chemo treatments till Ron gains his strength back. I know that this can be a lonely time for you as my wife Connie sleeps a lot right now. Connie is also on the Morphine patch (Fentanyl) and I also give her Hydrocodone through her feeding tube as needed. Stay strong for Ron and we will be praying for you both. We love you , Homer & Connie

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