This morning Dan said it hurt to swallow, but he ate today and says he doesn't need pain meds. Don't know if he's just being a tough guy or not. My question is was the swallowing a gradual thing or quick thing? Did it come with, before or after the mouth sores?
He has no mouth sores yet - just lots of coughing and mucous and gagging. He's started the mucinex and robitussin to try and thin it.
The taste buds are still bizarre - he is over-seasoning food and craving spicy food still. Drinks with carbonation are burning.
He's real tired. Lab work from yesterday (Friday) was great and MO said he was very pleased at how well he is doing at this stage.

Just wondering where you guys were at this point. From what I've read I think he's pretty blessed to be doing this well at this stage,, but that we don't need to lull ourselves into a false sense of hope because it will get bad soon...
He is on Salagen (Pilocarpine) 4 x a day to try and help stay on top of the dry mouth issue since Dan's salivary gland is where the cancer is - and where the radiation is of course targeted.
Forgot another question - Dan's recently started BP meds, once a day and I read somewhere that Cisplatin lowers your BP... any thoughts on that? With the new BP meds and Cisplatin - his BP on Friday was still high 170/100.

Michelle I did not have real problems with swallowing until week 5. I had problems before that but is was thrush. In contrast I did not have mucous until late in the game, it was worst after the rads were over.... goes to show you how variable things are.
Make sure he eats and drinks while the going is relatively good. And although it will get worse, he is on the path!

Best
Markus

It sounds like your husband is doing very well with the difficult treatments. From what my doc told me, a side effect of pilocarpine is high blood pressure. I only took it for 2 days cuz it made me not feel well and sweat like crazy. As far as swallowing goes, Im sorry I dont remember how it kicked in. I just know it got to a point where even water burned and my throat was so bad I couldnt even talk. Hang in there, it will be over soon.

I found the first 3 weeks of Tx including my first Cisplatin was easy, much better than I feared but right after my second Cis which was the beginning of week 4 all hell broke loose and things just got worse and worse until the third week post Tx when I said I felt like I finally walked out of a nasty dark tunnel. I didn't have the Peg and all pain meds I tried made me feel worse than I did without them so I gave up trying and stopped taking them causing me to fall short on the daily water and "food" recommendations which, like a snowball rolling down down a hill, caused all sorts of nasty things to happen. Somehow I still found the end of my tunnel so I'm sure Dan and you will come thru A OK. Just don't do what I did, just do as I say do. LOL

Michelle,

At the end of week two of treatment(3 chemos and ten days of rads-BID), I was asking everyone when the bad stuff started as Bill was doing really well. At the end of week three things started crashing in and by the beginning of week four, Bill was totally on PEG feedings. It seems to happen pretty quickly. I think your body works that way...coping until it just can't anymore. Bill got fairly good relief from the liquid morphine I put in his peg...didn't need the fentanyl patch till week 5..those meds made it possible for him to swallow a little; enough to get a bottle or two of Gatorade down.

Hang in there...pretty soon you will be "celebrating" the last treatment.

Hugs, Deb

Hi Michelle-
Sound like he is doing well- for me, the pain came on gradually after about the 3rd week, it got worse over about the next two weeks and that's when I ramped up the painkillers, first Tylenol, then Vicodin, then to Fentanyl patches. At one point it started hurting so much to swallow that I was avoiding drinking and eating and that's when the doctor put me on the fentanyl which has some side effects but was worth it. I didn't have a peg tube. It's important to be honest with the doctor about how much it hurts and not try to tough it out.
Melissa

After 10 Rads I asked where we were on the pain scale and they said 2. You and your husband are doing well but my husband got really bad week 3-4.

With that said after that treatment was over the doctors wanted to try some more chemo and he has been in the hospital for one week with dangerous reaction to 5FU chemo.

Michelle- just remember every day is different and things can change quick or gradually. Just be ready and know that we are here for you.
Cindy

Hey everybody - thanks for responding. I spent today going back through old posts and reading tom & charlotte's book again. I made a list of suggestions for Dan and tonight he agreed to try the hot tea. He said the swallowing pain is here in full force - even with liquids. It took several tries to get dinner in him tonight, but he did finally eat something. Tomorrow he wants potato and ham soup - but real small / fine chunks. The mucous is horrible and last night I heard him choking all night. Tonight I gave him two of his surgery pain meds (Lortab 7.5) - he is real susceptible to meds so hopefully he will sleep tonight. We see the RO tomorrow so we'll discuss all of this with him and I'm sure get new pain meds.

Thanks for your support!

Hi Michelle-
One more suggestion, on the mucus, it helps to rinse and gargle with a mixture of baking soda, salt and water. Make up a batch of 1 liter of water, 1 spoon of baking soda and a little salt(doesn't have to be exact). Then he can rinse his mouth and gargle it several times a day, I used to get up halfway through the night and do it and it really helped. Also, I would use a big syringe to shoot it up my nose slowly until it came out my throat(you can ask a nurse to show you how to do this, it's called nasal irrigation). With the salivary gland being radiated it will affect his nasal passages too. That baking soda rinse was my best friend during radiation!
Melissa

Second the baking soda, salt, and water rinse...really helpful to my hubby especially during the night.

Deb

The Lortab did nothing for him, but he said the hot tea was soothing. Tonight we'll try the baking, salt, water rinse. We are off to the RO shortyl and plan to ask about pain meds.

Thanks guys!!

I would also recommend the baking soda/salt mixture. You mentioned trying hot tea. I drank Arizon ice tea (at room temp) with ginsing and lemon. To me this tasted smooth.

Also, I would recommend taking a stool softner with your pain meds to prevent constipation. Believe me, I learned the hard way.

yes to baking soda and salt... and if that hurst reduce the salt. Also you might want to consider viscous lidocaine. I found this to be very useful for short time pain control (especially for eating/drinking) and it allowed me to cut back on oxycodone/morphine.. Unfortunately however it is only short term relief.

M

I have the Arizone Tea, which works pretty good, some Apricot nectar, which is soothing and nourishment, and of course Davids Carnation VHC, which I am tired of but have to drink. LOL I'll try anything. I also drink a ton of water daily. Man for some good old fashioned steak or even a hot dog. I am ready when my mouth heals.

I wanted to give you guys an update on where Dan is now. Yesterday he completed the 4th chemo treatment (40mg/2m per week) and the 16th radiation treament (1.8 gy per day). His labs were great. All the docs/nurses yesterday were all pleasantly surprised at how well he is still doing. His complaints are the sore throat, mucous (choking/gagging), and taste buds - the taste buds make some things taste metallic and some things taste bland. Difficulty swallowing - the food must be soft/tender/moist. He has not lost any weight and is still eating and the pain is not enough to take meds. He does have fatigue, but the severity comes and goes. I feel like I'm walking on glass, waiting for the other shoe to drop because I know it's going to hit. I don't want us to become complacent right now. I am staying on him about all the preventive things you guys have shared. We're just taking it one day at a time and trying to really enjoy each day. He cooked breakfast for me this morning and we shopped for a swing set (online) for David's 3rd birthday (May) and now he is out "playing" in his workshop. A wonderful day!!!

PS: I forgot to ask about hair loss. I haven't told Dan and he hasn't noticed yet, but the last two days the back of his shirt has lots of hair on it. It's not enough yet that I could tell by just looking at his hair. I thought I recalled that Cisplatin does not cause hair loss?? Any feedback on this?

The radiation will cause hair loss - sometimes permanent, if directly in the beam field. I never have to shave my neck again (except for a very few stubborn stragglers)

Thanks Gary - I forgot about that and it seems like so little of his head is actually in the radiation field and he's only getting it on one side, but the hairs on the back of his shirt are symmetrical all across the shoulder blades... Does that make sense? CSI I'm not as I describe the "evidence" :-)

Michelle,

Bill had Cis and Taxol so not sure which was the culprit but his beautiful full head of silver/white hair definitely thinned but did not all fall out. His hair is back to its original fullness now...really it started looking better within a couple of months after treatment ended.

The radiation field did keep some neck hairs from coming back as well and the best of all...Bill's skin is very oily but the neck and shoulder areas in the rad field are soft and clear of oil now. Only his face gets oily. Keeps his shirt collars clean. Hey, you have to find all the good you can from this experience.

Deb

Michelle,

The hairs on the back of his neck will fall out due to the exit path of the rad. They will most likely come back many months post Tx. Like Gary I have not had to shave under my chin since the rad but my whiskers did fully return above my chin. As far as I can tell not having to shave under my chin again is the ONLY benefit (well other than saving my life) about this Tx.

I just realized I said up there "so little of his head is in the field" - I meant the hair area of his head. His field is around the right ear down that side almost to the collarbone.

I have baby smooth cheeks and a part of my face and neck are fuzzless too. My hair is starting to fall out, but this is part of what I was told to expect. Have to watch my eyes too. It seems to have dried them out a good bit. I keep tears plus on hand and it helps some.

Like Gary and David, my neck is fairly pristine from hair,except for a renegade or two just below my incision line. The hair on upper lip came in much more than the rest of my beard, to date, making it appear much darker than before treatment. I lost the hair at the very back of the neck as well, but it is coming in fine now

I think the very back of the neck is what surprised me. I don't think I realized that would be in the field? And I think it was David mentioned the radiation "exit" path? I don't fully understand that.
I just want to be prepared for him when he notices. He has always been very sensitive about hair loss and receding hair line, etc. He has gone to Atlanta to have the hair transplant surgery done - that's how worried about he is. I've told him from day 1 of our marriage that I think he's handsome and that if he goes bald it'll be sexy :-), but based on his history I would assume when he notices this current side effect he will be a little upset.

Michelle,

That was the way my RO explained it to me. The Rad going in exits thru the back of the neck and burns the hair off but like I said it's a temp thing and it will slowly grow back many months post Tx. Since he can't see back there just don't tell him it's gone. LOL I really didn't know about until my wife told me. Then my barber kept me apprised each hair cut. I guess I was worried too at first but looking back now that was a silly minute thing to focus on.

I remember when my whiskers began falling out, I was not expecting it, didn't even know it would happen and I'm rubbing my face and I would find little black specs like grains of sand in my hands. I'm thinking what the hell is this. I eventually figured it out but it was a weird way to find out. Like I said they never returned under my chin where the Rad was directed but the did come back above my chin. At first they came back darker and heaver than my normal whiskers and I had to shave twice a day but then they returned to my normal. Under the chin I still get a rouge whisker or 2 that I have to watch out for or else I look kinda old and senile. Watch it Jim !!

Regarding the field concept...
xrays do not just stop they go through and through tissue (consider an x-ray picture), and they are a lot more energetic. The way the radiation field is created is by changing the angle of the irradiation (and intensity). This will create a irradiation volume where the all the radiations add up. However, you still have the individual "shots" the path the radiation takes. If you have very sensitive cells (i.e. hair follicles) in their path they may be killed (both exit and entry damage). Generally, the stuff at the back of the head comes back.

BTW: This is why proton therapy is very interesting, here the particles stop after a certain penetration depth. So you would not have any exit radiation collateral damage.!

Markus

Just wanted to give you guys an update. 18th rad treatment done today and Dan saw the RO. I wasn't with him, due to a conflict that couldn't be changed. I sent him off with a typed list of questions and symptom summary, etc. Because as I've mentioned before he is horrible at communication. I said worst case - just hand my note to the nurse :-).
He lost 5 pounds this week and they were not thrilled. His choking mucous is getting really really bad, nothing new to suggest for that. You guys have recommended a humidifier and as yet I haven't been able to talk stubborn hubby into using it, but he said he wants to try it tonight. His taste buds are basically non-existent, nothing new to suggest for that and the RO told him it was likely they would never recover, based on how fast they have gone and how much treatment is yet to come. He occasionaly mentions pain and nausea, but usually it looks as if he's "grinning & bearing" it. I can't tell if he's being stubborn, if he's worried about the drowsiness the meds cause (then he couldn't drive) or if the pain is bad, but he has a high-tolerance. I am assuming when it gets bad enough he will let me know. He has no mouth sores yet - knock on wood - so I assume that is part of why the pain is not horrible. He does need his food to be soft and he drinks hot tea for soothing and he doesn't like to talk much. He is so hoarse it is hard for anyone to understand except in person. Since his radiation is directly to his salivary gland the RO has has him on Pilocarpine (Salagen) 4x/day since the beginning. RO told him to discontinue that medicine. Not totally clear why, but based on what I have read about the "not so common" side effects, I think that is why. I will verify tomorrow via e-mail. Hubby has not had complaints of dry mouth and I was crediting that to the Pilocarpine... if that is correct then I'll assume the dry mouth will start in a day or so.
Dan is still eating more than I imagined he would with no taste. I told him today I was really proud of him and he said he's afraid if he doesn't eat he won't be able to fight as well. I will enjoy that attitude for as long as possible.

He asked the doctor was this how it was going to be from now on and of course the doc said no - it would be worse and even though I've tried to prepare for what is to come, he was still surprised today to hear that. I imagine he'll be a little more depressed tonight.

I am trying to be very positive and supportive, but more in the matter of fact positive style - not the "poor baby" style. He seems pleased so far with my handling of things and is always saying nice things to me and giving me hugs. It is so hard to watch him through this and not be able to help him - it just makes your heart ache and your stomach goes in knots. And then you realize that what you feel is nothing remotely close to what he's going throug.

Sorry this was so long.

Michelle:

Hang in there. Im sure that you are an excellent caregiver to your husband. Thats a very heavy load to carry. I personally went thru absolute hell with my treatments. Then I think of how it affected my teenage children who watched me suffer and realize that they had it worse than me. Being a caregiver isnt an easy job.

Im sorry to hear your husband is starting feel the side effects. The dry mouth probably will not kick in til a few weeks after his treatments have ended. Keep encouraging him to drink as much as possible to avoid dehydration. If he hasnt already tried ensure, boost or carnation vhc now might be a good time to start. Push the calories too, losing weight isnt good, it takes alot of energy to fight cancer.

I will keep your family in my prayers. It will be over soon.

Christine - thanks for the compliments and Congrats on your Jan scan.

I have a question for you and for any of the others that read the thread. As I mentioned today Dan saw the RO by himself - one of the things that came up was they are actually now planning 39 rather than 35 IMRT's and 8 instead of 7 Cisplatin. He also told Dan that the last treatments will not be spread out to encompass the neck - they will be focused on the tumor area - because of the margins not being clear... So anybody experience this adding of treatment or know what it means to do the focus at the end? I swear I don't care if scheduling takes an act of Congress or what I have to do I am never missing another appointment. I love Dan, but he is horrible at asking questions, etc.

Michelle,
It sounds like they are giving him the maximum dose of radiation (AKA a "boost") which would be around 72 Gy. The Cisplatin is an adjunct to the radiation so if would be normal to add another dose to coincide with the "boost".

My wife was a most excellent note taker - and she had to be - my mind was too scrambled and preoccupied to remember 1/2 of what was told to me during Tx. All of my decision points and trees were made pre Tx. My wife (and I, of course) mainly had to deal with the side effects of Tx which changed frequently.

David - not only do I not have to shave my neck but the Tx also permanently cured my snoring (yet another hidden "benefit").

Michelle,

Don't let him believe that just because he is loosing his taste "so early" as the idiot doctor put it that it will not recover. I lost my taste within the first 3 weeks and my RO's nurse kept telling me it would return a month post Tx. I didn't have the benefit of this site so I believed her. She also told me my dry mouth would only last a couple of months. I was set up to feel deficient when those things she told didn't happen only to find this site and realize it probably NEVER happens that fast. My taste and dry mouth did almost fully recover but it took me all of 16 months post Tx and the elders on this site say 18 months is about the time one stops recovering so I'm normal. Don't let him lose all hope for recovery from taste because no one can predict that, only time will tell.

Michelle- Neil had a re-focus towards the end of his radiation also. They try to narrow the field of radiation to spare the surrounding area. That's how it was explained to us. Neil's tastebuds are starting to come back now. He is about 4 months post radiation. He is also starting to get feeling back in his face which is something they said might not happen. Nerves have a mind of their own sometimes. You can't be everywhere at once. Maybe you can call the doctor for a recap of what you missed.
Sue

David, (Sorry Michelle, to hijack the thread for a moment)

I can understand why a general RO (and their nurses) would give info regarding taste buds, saliva, etc. that is not accurate as far as statistics is concerned, but for dedicated H & N docs and there crew to do that bewilders me. After years of seeing only H & N pts., they should know that these functions don't return that quickly....and that each person is very individual in their recovery timelines. I would think a better answer would be "while we see faster and slower recoveries, the average is blah, blah." Surely they have records to show to give them a good idea about these things???

Deb

I had almost exactly the same regimen -- 35 IMRT, 4 "Boost" sessions, 8 Cisplatin. My rad sessions were distributed a little differently. The first 28 or so included both sides of the neck, the tongue/head, and the upper chest. After about 28, the upper chest was eliminated. After 35, they still did neck and head, but added time to the tumor itself.

So far so good!

Michelle:

Its much better to add treatments now than later. From my understanding, radiation can only be done once to a particular area. The last few radiation visits for me were long ones because they focused more on the 2 cancer spots I had.

I would like to know what side effect he has that caused them to stop the Salagen. The fact that he is still has saliva is allowing him to eat even if he can't taste it. I took Salagen all through treatment and for two years after. Also I lost all my taste except salt by treatment 9 and it only took a few months to get most of my taste back. However, I couldn't eat any dry foods like bread or crackers, all foods had to have moisture and that was on salagen. I can't imagine what it is like without it. Also , use plastic utensils to eat so he does have metallic taste. I would question why the stop of Salagen.

Take care,
Eileen

What I have found out so far is the the reason for stopping Salagen is the mucous and hoarseness - these are both rare side effects of the drug. I still don't think I agree with stopping it when you compare risks/benefits... I plan to get a 2nd opinion on the salagen from ENT and MO. The RO also said he thought the Salagen could be affecting taste buds... I can't find any thing to support that.

Are you at a major cancer treatment center? We all had heavy thick mucous. I was given Guiafenix (sp) for it and it helped some. We all lost most our taste. The fact that they are frying his saliva gland would make me want to continue the Salagen but I'm not a doctor.

How many H&N patients has the doc treated? Has he given others Salagen? How does he account for the loss of taste and mucous in his patients not receiving Salagen? Also there is no requirement that he take 4 pills a day. My recommended dose was 3-6, whatever worked best for me.

One other thought, did you rent the suction machine? I'm certain that would help during the day. Biotine mouth spray also may help in addition to the baking soda/salt rinses.

Take care,
Eileen

Deb,

That was the most disturbing part of my Tx, i.e. his nurse telling me that I was really having a tough time and my taste and saliva should return within a couple of months and I naturally assumed she knew what she was talking about.

It's real funny yy first post on this site was about 2 weeks post Tx and I was having a tough time and I described what I was going through and what I was able to eat and how bad I knew I was doing and within minutes I had like 8 or 9 replies telling me that I was normal and if anything, I was better than normal. Man that really opened my eyes and gave me a mental boost when I really needed it. I just couldn't believe Trotti's nurse lead me to believe that I was doing so poorly.

Hopefully David, given your propensity to tell it like it is, you have educated her??? When you are in the throes of treatment, the last thing you need to hear is erroneous and far too negative information. I would hate to know that she has done that to more people. Anyway, still amazes me that she could be so wrong when all she sees is H&N patients.

Sorry again to hijack the thread..I will turn it back to the subject at hand.

Deb

Hello Everyone,
Greeting's from Sand Mountain,Alabama. Have been reading your posts and they encourage and lift my spirits. Was DX: 0207008,
SCC Rt. tonsil,Rt. neck dissection (3 lymph nodes removed),stage 1va orophaynx T2N2MO. Begin 30 rns Rads/3chems next week, have been putting down the H2o and liquids, and eating good, dental work done today for the floride trays. Hopefully won't have to get the PEG tube ,so plenty of protein shakes , went SRT climbing today at a local cliff. Looking forward to completing these treatment so I can get back to work down in canal zone. Will remember y'all in my prayers.
Rick

Deb - no apologies on "hijacking" - I enjoy the little tangents that spin off :-)

Rick - nice to meet you here. I responded to your post on the Introduce Yourself forum.

Eileen - we are not at a major cancer center. There is a CCC (on the list) at UAB in Birmingham, about an hour and 1/2 from here. All of our docs were trained at the med school there. Our cancer center is large (50 bed chemo area), everything on site (pharmacy, dietician, social work, etc.) but it is not one of the "top spots" and our RO and MO are not head and neck specialists.

This process started for us with a initial dx from FNA and exam of a benign tumor. We found a local UAB ENT Surgeon with a great reputation for the surgery. During surgery he found "all the bad stuff". Things just moved on crazily from there. We did alot of research and talked to lots of people and came to the realization that the treatment protocol was going to be the same here. So we decided it would be better to stay here. We own a business that is our livelihood and Dan is the backbone of it. We also have 2 children (12 & 3). Sitting here now as Monday morning QB it's easy for me now to see why we should have "sucked it up" and gone to Birmingham. But we didn't so now I have to get my tx info, etc. here on the board. If, God forbid, this tx doesn't work or if he has a recurannce we will go initially to Birmingham and then possibly on to somewhere else from there. Our MO was in Clinical Trials at UAB and he is the clinical trials director here in Montgomery - he looked into this for us and currently there was not anything of benefit to Dan. I have made a friend online, but off-post who had salivary gland cancer - a little different type and stage than Dan, but salivary cancer. She is in Seattle and I believe treated at the Center there which is supposed to be top notch. Her doc told her no Salagen during tx because it would thinken the mucous too much. She has been taking it post tx, but not during. In Dan's case we need to weigh his choking and not sleeping vs dry mouth. So far he doesn't have a big problem with the dry mouth, but does with the mucous - so the Salagen goes. That may change as things evolve. I have talked with Dan at lenght re: the suction machine and the baking soda, etc. Even though I am quite a take-charge caregiver and person by nature - everything is still ultimately his decision and right now he does not want to do either...

Thanks guys for your continued support and information. This is such a wonderful place to be.

Rick,

Forget the healthy do good stuff, eat all the sinful fatty crap you dream about now while you can because it will be at least a year from now before you will probably enjoy those things again.

Michelle
I have not been on this site for a while, but with reading your posts I can certainly relate to what your husband has been through. I also have Salivary Gland cancer. I had a neck dissection, with lymph node, carotid artery , and facial nerve involvement.I followed up with chemo and IMRT radiation also.This all took place back in 2006. While recovering from effects of chemo and rad. A follow-up CT revealed mets to my lungs. I am on a watch and wait approach. I feel wonderful and do not have any symptoms. My onc. believes that within 6-8 months symptoms could start to appear. At that time he would reccommend treatment.
I have always been looking to speak with someone who has actually had a similar experience. You had mentioned a friend in Ca. that has Salivary Gland cancer also. What is her situation, if you don't mind me asking?
Stay strong in your care giving. My best to your husband. There are better days coming for him!!!!!!!!! Pam

Dear Pam

I have just read your post after I posted a private quick note to Michelle about her hubby's experience with Salivary Gland Cancer. I don't know if you have read my post recently in the re-occurence section. However, briefly my mum is suspected to have Salivary Gland Cancer. Her consultant said her needle biopsy results look quite suspicious. She's due an MRI Scan on the 15th April 08 so we will know more after that.

In the meantime, mum is in SO much pain and discomfort. She is just managing to control the pain after I took her to see our local GP who prescribed Oramorph, Voltarol and Paracetamol. However, no pain relief is helping her other symptoms. She says she also feels a burning sensation in the area of the supposed cancer and it feels like someone has opened her up and rubbed hot chilli spices there or like radiotherapy burning. She says feels creepy crawley sensation there too like there are insects crawling around inside under her skin. She worries that the cancer is spreading fast. The hard lump under her skin in the parotid gland does appear to be getting bigger.

I am SO worried.

I wanted to ask if you experienced similar symptoms?

Thanks

Kathleen.

Pam and Kathleen it is nice to hear from you both.

Pam - I sent you an e-mail because I couldn't get the PM feature to work.

Kathleen - I sent you a response to your PM to me.

In people's profiles they can turn on or off the ability of others to PM them. Pam's profile showed that she wanted to be notified by email if someone sent her a PM, but had the PM button turned off. I turned it on for her. ( Pam you can go back into your profile and turn both of these things off if your do not wish people to contact you)

Pam, I do not understand what your doctors are doing. They have confirmed that you have lung mets, and they are WAITING to provide you with treatment for them when actual symptoms occur? Isn't that allowing them to get bigger, more dangerous? I would want to have these dealt with soon, before they go to a state of involvement that they could not be managed.

You guys are all just so amazing. I think I would be having a nervous breakdwn without this site.

I just thought I would give yall an update on how he's doing. Dan has started complaining a lot more about the throat pain and asking for medicine on a more regular basis. However the Lortab is continuing to work, which is great because as far as pain meds go Lortab is weak. The mucous is also killing him - it is so thick that he has to actually throw-up sometimes to get it out. I

Get that nourishment and water in him every day. You need to start counting calories and ounces. Forget his weight. Get his skin reactions checked out ASAP. He has a LONG way to go and it will only get much much worse. His days will begin to slow down and eventually will become a crawl and everything can become magnified so it's best to stay on top of every minor detail that can become a problem later.

He needs PROTEIN and even though he is eating 3 meals a day, meat is probably one of things he is eating a lot less of so is getting less protein. Besides counting the calories, you need to count the amount of protein he is getting. I needed at least 80 grams, I'm certain he needs more. Check with dietician as to how many he needs. 8 oz. milk contains 8, add instant breakfast and it ups it to 16? (see box). 3/4 cup yogurt 8, 1 egg 7, 3oz meat, poultry or fish (size of deck of cards) 21, starches 3, veggies(1/2 cup) 2. The easiest way to get the protein and vitamins is to drink the Carnation VHC or Ensure Plus (13g) or Boost Plus. Maybe that will convince him to drink them.

It is good he is exercising because he does not want to lose muscle. Try a different brand of water if it is tasting metallic? What is he drinking it out of? Maybe a different conatiner? I lived on coffee as my water source, decaf, black no sugar sugar. No food value, but kept me hydrated. Ensure Plus was my only food for several weeks. So start counting both calories and Protein and water intake. He seems to be doing quite well so far.

Take care,
Eileen

Thanks Eileen and David - I will start counting today. I know what we had for breakfast so I'll just go back and figure it out. He only ate 1/3 of his so I'll figure all that in. I just need to make a chart.

We will see the RO tomorrow and I am anxious to see what he says about the skin reactions.

Regarding nutrition: I found a wonderful free site called www.fitday.com it enables you to keep a food diary daily and it tracks the calorie, protein, carb and fat count. My new "deal" with Dan is if he gets at least 2500 calories and 150 grams of protein per day that I will leave him alone about the meal supplement drinks.

RO said he thought skin reaction was nothing to worry about - just comes from Dan being mildly fair skinned... I asked him should we see a Dermatologist and he said when this was over, but not now. I don't know if I'm comfortable with that - I'm going to do a little research on my own.

I do have a new question though. The choking mucous is causing Dan to throw up on occasion (becoming more common) and he says he feels weird, but he doesn't think it's nasuea? Did yall's nasuea present in the usual "quesy" way or was it different? Dan is not a big fan of taking pills and he's like I don't want to take a nasuea pill because it's not that... But he just threw up his supper and he doesn't want anything else.

Dan was prescirbed some extended release morphine today - the lower 15 mg dose. We'll see how this works for him.

Michelle,

I know the feeling about Dan throwing up and it not being nasuea. I usually threw up in the morning after my first feeding due to all the mucous settling in my stomach overnight. I learned not to eat right away after waking up and that seemed to help. During the day I would rinse my mouth out with the baking soda/salt mixture to break down the mucous and get it out of my mouth. I would go through at least a quart a day of this mixture to rinse my mouth out. I seemed to not have any problems during the day with throwing up. The mixture is 1 tablespoon salt / 1 tablespoon baking soda / 1 quart of water. I would rinse a lot throughout the day and also get up and rinse during the night. I always had 2 - 1 quart bottles made a day.

Most of my husbands vomiting was triggered by the choking. He uses nausea medicine that desolves in his mouth. He doesnt mind taking them because it is so easy to pop one early morning any time he thinks the trigger might get pulled.

My husband created his own way of dealing with mucous. I buy cheap little paper cups and expensive viva paper towels. He would then spit it into the cup and cover it with the paper towel he used to wipe his mouth. Then he could easily throw it away. The doctor saw him do this in the hospital and said that his system was the best thing he could do for recovery....get rid of all you can. Sometimes throwing up large monsters as he called them...made him feel better for a couple hours or days.

Everyday is different; sometimes every hour is different
Cindy

I,like many, developed what I call a gag reflex. I got so use to throwing up that the slightest thing could trigger my gag reflex and I would throw up. Nausea, per se, had nothing to do with it. I remember many times waking up with a mouth full of STUFF and would hope I made it to the BR sink in time. I didn't find anything other than time that cured it.

Did the dietician tell you 150 gm of protein a day? That sounds like an awful lot. Assuming he were on an ENSURE PLUS only diet, that would be 11.5 cans and 4140 calories. The most I ever heard anyone taking is 6 or 7 cans which is about 91 gm of protein. I don't know the numbers for Carnation VHC. Your calorie count sounds good, but the protein seems way to high.

Eileen

VHC has a whopping 23 grams of protein in each 8 oz can so in my heyday I was drinking 6 cans for 3360 cals and 138 grams of protein. None of my docs though mentioned protein, just calories and water.

Eileen - the dietician didn't give me a number for protein - she has just said high-protein and high-calorie diet. I just went back and calculated an average day of food intake for Dan and I came up with that number - not that I think he would have to "hit" that number during this cancer "saga". Dan is very active in his daily life with work and hobbies and he loves to eat and loves meat - hence the high protein. We are supposed to meet the dietician again Friday and I hope to find out more specific numbers at that time.

David the only reason I haven't ordered the Carnation VHC yet is because I have to buy a whole case and today after MUCH arm twisting I finally got Dan to even try his first supplement drink - a Boost Plus. So I hate to order them and he not like them... Kind of a Catch 22 over here. I don't know why I stall though - in the scheme of things I'm probably better off to have them.

Our dietitian calculated a protein goal based on Dan's weight from day 1. She was very diligent on checking up on that weekly. Michelle, if you don't want to invest in a case of VHC, ask your dietitian for samples. Our dietitian gave us lots of different samples to try to increase calories and protein. My husband was about the only person I know of who couldn't handle the VHC because of the thickness and problems with swallowing. But, for most people it has been a lifesaver.

Margaret - thanks for the tip, I did ask her and she said there was no longer a supplier in our area so she has no samples and she said that she didn't recommend it because the majority of her patients said it was too thick. Of course that is another reason I am a little leary of ordering it. But based on a totally unscientific poll - reading this board - it seems that to the majority it's a lifesaver.

Michelle,

Believe me he won't care what VHC tastes like, because he probably won't taste it. I had to drink it room temp and I could actually taste a little sweetness but I didn't care as I was ONLY interested in swallowing that can to get the most cals I could with the least amount of effort. I ended up drinking the VHC for over a year post Tx to help supplement my eating because I just didn't care about eating all these foods that tasted like ....

Thanks David - excellent point. I'm going to go ahead and order it today.

Update and questions. Dan has completed 26 IMRT and 6 cisplatin. The past 48 hours the dramatic decline has started. Pain has increased dramatically, swallowing ability decreased, food he could eat Friday he cannot eat today. He is sorely lacking in the calorie and fluid area now and I am not having much luck today to get anything into him. Today he has had maybe 25 oz of water and a small helping of soft steamed veggies. He is about 10 times more tired today than Friday. He has not really had a problem with nausea since we started, but today it is horrible. He has never taken any medicine without me saying do you want a __ pill... today he keeps asking for meds. Then to top all this fun off he has developed some pretty bad burns on his neck and behind his ear. Blistering, popping, skin coming off, etc. We've been putting the silvadene cream on it and trying to clean it - but I tell you I am woefully inadequate at burn care. I've spent the last hour searching here and online for some tips and not having any luck. I think I told you guys that his WBC was 2.5 on Friday and his BUN was bad enough that the nurse had to go check to make sure he could get treatment.

I know this is pretty much how it's supposed to be, but wow it seems to have all hit at once. Any suggestions on the burn or on any of it?

Michelle- Neil used Biafine cream. I don't know if that's the same thing. I'm so sorry you guys are having trouble. It really will get better eventually. You might want to talk to the doctor about a PEG. The effects of the rads will continue even after treatment is over. Hang in there sister!
Sue

Thanks Sue - I'll have to look that cream up and see what the difference is. We will definately be asking for a PEG and probably a PORT as well.

I was supposed to have an outpatient procedure done on my back tomorrow to try and relieve the pain (since we can't do surgery right now), but based on what is happening today - we will need to see the doc tomorrow when he's in for his radiation treatment.

I am a little stressed today and overwhelmed and feeling inadequate, but I know that's normal and we'll make it though. It's just tough sometimes - as of course you know!!

I need to go and get David some supper and a bath and story time, etc. I need to eat something as well, but just don't seem to have an appetite today.

Michelle,

When my neck got so burned at the end of treatment, my nurses gave me these gel bandages to help with the healing. They come in sheets and you cut off the size you need for the different areas. I probably looked pretty weird there for a couple weeks as I applied the gel patches all over my neck. They really helped with the healing and it felt good on too. My skin didn't dry out and crack like it did before I had the gel stuff. I don't know the name, but I am sure someone else on here or your RO nurse could help you.

Hang in there it won't be long before the treatments are over and things will be heading in a positive direction.

Cindy

Michelle:

When I was towards the end of my radiation treatments, my neck had open oozing sores on it. Putting on the rad. mask was almost unbearable. The techs would wrap gauze over the open sores vey lightly. After I was finished with the treatment, I would use the prescription beta-val cream. I have used the silvadene cream several years ago on a severe burn I had. It worked very well, no scars at all. Load up the cream on your hubby and dont rub it in, let it soak in and put a peice of gauze over it to protect it. That should help him to feel better.

Watch your hubby's liquid intake! Keep a very close eye on it. That is what put me in the hospital twice, the first time when I was about where your hubby is now. Second time was 2 weeks after treatments ended. If necessary, he can get hydration while doing his chemo, just talk to his doctors and tell them he is how much fluid intake he has.

I wish I could tell you its going to get easier, but it will be at least 2 weeks after treatment ends for him to start feeling better. Ive been following what you write and it sure sounds like your husband is a real trooper. To me, he has done amazingly well to not be showing the major side effects til now. Thats due to having such a great caregiver!!!!

Hang in there

Wow Michelle,

I feel your pain and anxiety. Bill seemed pretty OK one moment and over a weekend went south really quickly. The only saving grace was that he had a PEG and I was able to push fluids and nutrition. You don't have much control of that and it must be very frustrating.
Per your posts, I am very worried that Dan is not getting enough fluids. Glad tomorrow is Monday and you can call your docs...its hard to feel like you are being a pest, but I think that you need bug them if Dan continues to act so sleepy and weak. It couldn't hurt to just have his MO administer fluids. As Christine mentioned, the dehydration really sneaks up fast!

I think we all wish we could be more help when times are so rough but know that we are thinking of you and praying that you and Dan have the strength to endure.

Things will be better in the not too distant future. Right now, you have tunnel vision..one hour at a time...I understand and have been there. You just get thru the day. It WILL get better.

Hugs, Deb

Michelle- Please remember to take care of yourself also. You won't be good to anyone if let yourself get too run down. It helps to sit down with a cup of hot tea and let yourself breathe. The stress is most definately taking it's toll on your back. I'm thinking of you.
Sue

Well I am very angry right now. Dan woke up about an hour ago and I was checking on him and asking him could I get him some food/water/etc. He said maybe in a little while. I told him I was concerned, etc. and he said he was fine. I mentioned going to the doc tomorrow, etc. and he said well we're not doing aything tomorrow but my radiation treatment - I have a big day at work. After a "disagreement" he said I could go with him Tuesday, which is the regular day we see the RO. He can be so hard-headed and God knows I don't wnat him to hurt but I guess he'll have to hit bottom to realize what kind of shape he's in. After we "talked" he heated up the soup I made yesterday and poured a large glass of water. I hear him in the living room - literally choking it down. I had called my dad earlier and cancelled him as my driver tomorrow for my back procedure. I just called him back and told him I guess he might as well come on and get me. If Dan's not going to let me help him nor go to the doctor tomorrow there is no need for me to sit around here and cry and worry about it. I need this procedure for my back, but of course would gladly postpone it to get him some help.

I know what he's doing to himself and all the things to say to him. I failed tonight. He is just being an ignorant A*&^. My dad and step-mom offerred to talk to him, but I know it won't do any good it will just make him angry.

I told him he obviously didn't need me right now and I was going to bed. So I'm in here watching TV using the laptop and he's in the there eating.

Oh - he had the audacity to say well I'm eating now so it's fine. I said I am so happy/proud/etc. that you are eating now, but you are water and calorie deficiant and this one potential meal is not going to make up for it. You've been this way since Friday.(and he may not even be able to get this down or keep it down). Then the fool stepped on the scale and said well I'm not down much (he wouldn't tell me the number) and I said at this moment I'm more concerned with everything else than the weight. That's not the only indicator - if it was then why do they do your bloodwork. He just got quiet after that and poured a bigger glass of water.

UGH sorry to dump this on you guys - I am just soooo frustrated right now. Thank heavens David went on to sleep early tonight. I don't think I could handle him in the mood I'm in.

Thanks for listening and I guess Dan's going to have to hit bottom before he starts listening to me. Just pray that he doesn't kill himself in the meantime.

Michelle: I could have posted every word you've written about Dan....Your posts read like the diary I could have written during Buzz' treatment.
I had to 'back off', just like Deb and some others here will tell you they had to do....Trust me, he'll come back to his senses as his treatment progresses!

Buzz was only able to tolerate 28 of his 33 scheduled IMRT's because the burns were so severe. I SLATHERED the silvadene thickly on Buzz' neck, (just as Liz (Cookey)directed) then LOOSELY wrapped very thin wide gauze around his neck, before putting on a loose-fitting T shirt.
Although Buzz had a PEG tube inserted before beginning treatment, he didn't want to use it, and insisted that it be removed soon after treatment ended. Buzz now weighs about 145 pounds and looks like 'death warmed-over'.
NOW my 'superman' wishes he had cooperated when I 'bitched' and begged him to EAT and DRINK more.
Oh, well, I won't write a book, but I COULD!
My thoughts and prayers are with you both. I also pray that you will be blessed with some relief from your back pain following your procedure tomorrow. The pain 'further down your back-side' will hopefully one day thank you for your persistance and constant encouragement!

Lois in NC

Thanks for all of you for your support and thank you Lois - it's good to here that they can be such a-holes and still make it through!!

DO NOT LISTEN TO HIM WHEN HE TELLS YOU HE IS FINE AND HE'LL DO "IT" LATER.

Later never comes. He is only telling you that to get you off his back but this is the time you need to be the bitch and MAKE HIM drink fluids and food and this is time that he needs you the most and this is the time that something like VHC comes in handy because he doesn't have to swallow as much to get the necessary amount down his throat. I also doubt they will want to do the Peg or Port now but that's only my guess. There is another alternative to the Peg and that is the nasal tube that only takes a few minutes to insert and doesn't require surgery. It's really meant for temporary circumstances but would definitely help him over the upcoming weeks. I know because I had one for 2 weeks after my Tx was over and it made all the difference in the world for me.

Biafine is an excellent cream both to heal and prevent radiation burn but while it is a deep wound healing cream, is not supposed to be used on open wounds.

If he really wants to tough this out with no PEG as a few of us did, it is now time FOR HIM to get the protein drinks out of the refrig and start drinking them or make high calorie, high protein milk shakes. While the soup is a nice supplement, it is not a meal and does not contain the amount fo protein his body needs now. Now that he is finally 'down for the count', he may become less recalcitrant. It WILL get much worse before it gets better and better doesn't start until several weeks after treatment ends. I used the nasal tube for two weeks after the surgery in 2001. They aren't pretty, but do work well.

Take care,
Eileen

OK, here are some shake recipes from an old post. Maybe he can mix himself up some of these.

All sent. In case anyone else wants them:

One (750 calories):
1 cup milk or soy milk
1/2 cup ice cream or sherbert
1 scoop protein powder (Spiru-tein or other, but note Ed's comment on Spirtu-tein))
1 Benecalorie (this is 330 calories alone, but note Karen's comments on weight)
2 TBSP Canola Oil (240 calories alone)

Two (500 cal):
Ensure Plus
1/2 cup ice cream

Three (obtained from some site somewhere, 1300 calories):
2 cups ice cream
1 cup whole milk
1/2 cup 1/2 and 1/2
1 pkg instant breakfast
1 tablespoons malted Milk
2 tablespoons Ovaltine

I've already experimented with the first one. IE, mixing Ensure, Support, Boost, skim milk, etc. She just gave me that as a base, so it's obviously flexible.

Thanks for the encouragement and recipes!!

FYI--
Not sure if i have shared this before-
my mom drinks the Ensure Plus, it has over 100 calories more than the regular ensure.

Ok - Dan had he day off from radiation and had another throat scope. Everything still as expected in there - no new "scary" things found. He has decided he wants a PEG and it will be done on Tuesday. He is trying to drink Boost and Ensure (Plus), but they are so think they hurt his throat and choke him if he doesn't chase them with water.

Try thinning them out with some milk. That's more protein and calories.

Take care,
Eileen

Milk seems to be a really good idea. Joe drank LOTS of whole milk.

I am so happy for Dan. Plugged in and watching tv or doing his business calls. Your life is going to get much easier. Let me know if you have any questions. Make sure the give you gravity bags.

Everyday is different
Cindy Ray

Michelle- I sure hope this helps Dan. It has been the best thing for Neil. As Cindy stated, he can go about most of his business while getting nutrition. Neil has taken his with him in the backpack the service provided. I never thought he would do it but it really was easy and didn't draw too much attention. It will give his throat some much needed rest. if you need any advice just pm me and I'll send my phone number. We had some issues in the beginning but they were resolved quickly. Neil has had his for 7 months now so we're pros.
Sue

Hi. This is my first post. My husband just completed his 16th radiation and had one cisplatin treatment 2 and a half weeks ago. He will have his next cisplatin next Monday and Tuesday (they are splitting the dosage in to two days in hopes that his kidneys will handle it better). Last Thursday the difficulty with eating began. Today he only had liquids. We did a ScaniShake which we got up to 900 calories with canned peaches, protein powder, yogurt, and half and half. We were also able to get him to drink some beef broth. Other than that, it's been slim. We put lentil soup in the blender which he ate. He is in so much pain that swallowing anything is horrible. He is opposed to the feeding tube. Any suggestions? It's horrible to see him in so much pain, feeling hungry, but choosing not to eat because of pain. To keep him off the feeding tube how many calories a day does he need?
Any suggestions are welcome.
Thanks,
Lisa

Lisa - welcome to OCF you'll find this is a wonderful and supportive place to be. One thing that will help us help you much better is if you take a few moments and read the FAQ and new posters info and add your husband's details to the signature line. You will want to go to the introduce yourself forum and tell us about you guys.

Regarding your questions here:
1st) the appropriate number of calories - they should have a dietician where your husband is being treated. they will give you the best info re: calories needed; they can also provide you with high-calorie recipes, ideas, etc.
2nd) your RO or MO should be aware of this and they can prescribe pain medication as necessary to help him eat; they can also tell you at what point it would be critical for your husband to get a tube

good luck and again, welcome.

Lisa,

I know you're new but you should really start your own post rather than coming in on an existing one as it allows readers to focus just on your questions.

It also helps if you include some information in your signature line so that responders get the overall picture before they respond.

I'm sorry that things have started to go downhill but it happens to about 90% of us during Tx. I would think that he needs at least 48 ozs of water and 2000 calories EACH AND EVERY DAY starting today. Don't let him slack off one day. That should be your goal as he probably won't care and will even resist your efforts but if you aren't successful it can and most likely will lead to further and serious complications.

Consider Carnation Instant Breakfast VHC. It has a whopping 560 cals in an 8 oz can. You must order it from your pharmacist (like Walgrens or CVS)even though you don't need a prescription.

Welcome to this site as it will become the best tool in your cancer fighting arsenal outside of your medical team.

Dan's WBC was 850 today so they wouldn't do chemo treatment. The rest of his bloodwork looked good. I asked about the injection (neurlasta sp?) and the MO and nurse said they thought the side effects were worse than the benefits... PEG tube surgery is Tuesday - they will re-check counts that morning.

Dan wanted to go to work after we left the cancer center (since we have a free 1/2 day) and I told him the doc said for today and the weekend he is supposed to take it easy and be on mild bed rest. I can't get him to rest for anything so I just flat out lied!!!! I hope it helps him. This is when it pays off that he can't hear and that he leaves most communication up to me.

And he's nauseas today, which seems weird because we didn't have the chemo...

Kids are gone to be with family and my house is quiet. I feel like I won a prize. I am going to lay on the couch with my dog and have a little quiet time watching Fox News :-)

Nausea could also be his meds or dehydration. I suffered from nausea a great deal towards the end and 2 weeks post Tx. If I coughed I would throw up. If I tried to drink something I had to hold my mouth shut and hope that would stop my gag reaction. I wasn't eating or drinking and I didn't have this site to tell me otherwise. I was a mess. I finally stopped all pain meds because I thought (and still don't know for sure) they were making me sick. It was probably a combo of everything.

Thanks David! It's 95% the coughing, choking, mucuous gagging deal, but on occasion he'll do an actual "throwing-up". I think you hit the nail on the head when you a combo of everything.

Good luck with the 2 events this weekend at the restaurant.

Ugh, We are already at the restaurant and have been here since 5 am. I couldn't sleep much thinking of everything I could forget. It will all be over Sunday at 5 pm, just in time to get ready for work Monday. LOL

Hi Michelle
Sorry to hear about Dan. Craig suddenly unable to swallow today too so I guess they have both hit their threshold being about the same distance into their treatments.

Craig's been finding Canada Dry Ginger Ale really helpful in clearing his throat. I think it's probably terrible for his teeth (I make him brush extra). Unfortunately we ran out last night. I've just been out to get some but he won't drink it yet because it's not cold I'm hoping that we won't have to resort to going down to ER today (not least because we got 4 inches of snow overnight!) but we'll see what happens.

Interesting that someone comments about meds. He only started taking the morphine yesterday (on doctor's advice) so it makes me wonder if it has anything to do with it? Up to then he's been doing liquid T3.

Craig's last (3rd) chemo is scheduled for Tuesday with bloodwork done yesterday (Friday). We haven't heard anything bad so I assume it's going ahead but I guess we'll know for sure on Monday.

Marina

Michelle,
it is called neulasta, I got that at the end of my carboplatin cycles. I think I received this 2 times, it was not a big deal. As far as side effects go... I could not say that there were any. Did this work?? Hard to say, but I did not miss any (chemo) treatments so from that perspective it was a success.

M