Jerry began his induction chemo last Wed (23rd). As I think I shared (no memory here), the team recommended no surgery due to the excessive size of the tumor in neck. The plan outlined was 2-3 cycles of induction chemo followed by chemo radiation and then evaluation for whether surgery would then be completed.

We left the hospital Wednesday nite with the fanny pack and pump in place. At first we were a bit set back thinking the pump might be smaller and less awkward, but after considering the options, Jerry was pleased to be unrestrained to move about. Spent Thanksgiving afternoon with family. He felt well enough to eat quite well! I was thankful for that. By 10 p.m. that night however, he felt like crap. He held it together with the nausea meds, but one of them (Zofran) turned out to be killer on his head. He has always been prone to migraines and the Zofran attacked his head. Then the acid reflex began. By late Fri he wanted off the meds believing they were wreaking more havoc than the chemo. All new to me and feeling helpless watching him, we went ahead and stopped after our required 3-day dosages. Big mistake. Within six hours he was throwing up. I should have held strong recalling advice to stay ahead of the nausea with the meds, but he was very convincing (now I feel more strong about the feeding tube when chemoradiation begins because I do not know that I can fight him with eating when he needs his nutrition) It took a day to catch back up and get ahead but we did. Still feeling like crap but at least not throwing up!

Appointment with doctor Monday was very positive. The tumor in his neck has reduced in size so signficiantly that doctor believes they will stop the induction chemo after 2nd cycle; there will be no third. And adjustments to meds for 2nd cycle will address his continued nausea and headaches (replacing Zofran with Em..?) Planning for chemoradiation will then begin. Doctor believes that by April 1, Jerry should be feeling pretty good. I am praying that is true.

Jerry started running a fever this evening. Working to get that down but just a reminder of how simple complications can just change a whole day! And how this 'event' is such a roller-coaster! Wish I was in better shape to weather the ride a bit better, but because of all of you, it helps alleviate some of my anxiety through your sharing advice, thoughts, encouragement... So again, THANK YOU! Gayle

Hi, Gayle -
It is easy to feel helpless, but think of all that you are doing, and that you are by his side. You will be better prepared for the second round of induction chemo physically and emotionally.

Fabulous news about the tumor reduction! If Jerry will be starting chemoradiation around the beginning of the year, the April 1st prediction of feeling 'pretty good' sounds doable. It's going to take longer for him to get his stamina back - but you should both be able get out and enjoy the last of the spring snow and the first signs of green. It is almost a year since my husband's diagnosis, and his treatment began mid-January. It is hard going through the winter weather to the treatments ... but then it is done, and spring will come, and it will be beautiful!

Keep hanging in there, you beautiful caregivers!!! Oh, they do sound convincing in their discomfort, poor guys! It's hard to be the meanie while feeling awful about what they are going through.

Gayle, you are wise to hold strong when it comes to following instructions. Getting nourishment and fluids can be particularly challenging. They were major points of contention here and landed J in the hospital for four days.

I hope the feeding tube works well for Jerry. I would think that keeping fed and hydrated would go a long way in making the rest of it a little easier to handle. Even with a feeding tube, he can (and should) take whatever he can tolerate by mouth, even if it is just water. That way, he'll preserve the swallowing mechanism.

Sometimes, they forget we're on their side. So, every now and then, a little reminder is in order. It's not an easy rollercoaster ride for either of you. You are doing a great job! Keep moving forward!

Remember to take a little time for yourself. Try to get some quality rest when you can. Your incredible husband has an incredible wife!


Sandy
xoxox

Oh Gayle - As a caregiver I know what a roller coaster ride it can be in caring for someone you love. It's been almost five years since I took that ride with my son but I remember the anxious days of wondering whether to be soft and compassionate or to hold firm. It's good to keep track of everything that goes into and comes out of the patient, as well as to keep track of all the medications so that if one doesn't work or has a bad effect, you can be prepared to check with the doctor who may recommend a substitute. It helps to remember the positives that happen like the the tumor reduction and celebrate any small improvement. Things do get better!

Sounds like you both are doing great. I hope the fever and nausea are under control now. Lots of good thoughts coming your way.

Gayle,
I had a similar Dx and treatment protocol and never had surgery. My tumor had completely melted by the third week of radiation. I also had one infusion less because of the severe issues with nausea and weight loss. It is the "E" ticket ride in the roller coaster dept.

Please note that was 9 years ago and I am doing all right. I hope your outcome is the same.

Jerry finally made it over the hump from the first round. I took him to local hospital Friday for more liquids. Second time but seems to have really helped. He feels so much better with his nausea and able to eat again. Now, however -- it's always going to be something (Rosanna Danna) isn't it? -- he is fighting mouth sores which makes it hard to eat. I have read so much here and there and ... just wondering if someone could please share any recommendations to help. Also is having trouble with eyes feeling like they are burning? Maybe just the fact he finally got a good nite's sleep at 10 days! Overall, much better so looking forward to this week and next enjoying eating before round 2 hits on the 16th.

Try some magic mouthwash to numb the sore mouth. Then try some of the easy to eat foods on this list. Right now texture of the food plays a huge part in if you can handle eating something. It takes time to heal so try to add some high protein powder to help speed his recovery.

Easy to Eat Foods

Hi Gayle, Manuka honey has been used with good results in healing mouth sores for patients here on the forum. There's quite a bit of recent discussion about it--just put Manuka honey in the search box right above "Who's Online" in the upper right corner. I hope it helps.

It is stunning how miserable you can feel from dehydration! If you haven't already, use the infusion unit for IV rehydration - it's much more comfortable, very little wait (typically) and much faster.

I agree with Gary. I went in two or three times for rehydration and it always made me feel much better (not sure if we're talking about the same thing - "infusion unit" - I just went to the RO's office and they gave me a bag of IV fluids for a few hrs). Also for mouth sores ask about viscous lidocaine. Just rinsing with baking soda in warm water every day is another good idea.

My best thoughts to you both.

Please mention the burning eyes to your oncologist BEFORE he gets his next chemo doses if possible (and don't let your husband con you into thinking that it has gone away or is not so bad - let the doctor determine this).

There are many side effects associated with cisplatin and 5FU and this could be one of them. As some side effects are cumulative (get worse with more doses), this might be an important. I have no idea if it actually is a chemo side effect, as only your doctor will be able to give you an idea, but would hate to think that it wasn't mentioned when it should have been.

Good luck next week

Don't know what button I hit but I had started a response that disappeared on me! Ouch! If this is redundant, I apologize.

So, as I was saying... round 2 of the inductive chemo was much friendlier. Because of significant response to first cycle -- tumor all but disappeared -- they backed down on chemo intensity and duration. It really did not shorten Jerry's 'recovery' period, but the symptoms were hugely reduced. Plus the anti-nausea meds were adjusted (replaced the Zofran with Emend) and we started the antacids four days in advance. Jerry did pick up a cold about a week ago. Nothing bad, no fever, but quite annoying. He also started to develop a rash on hands and arms about five days ago. Again, nothing huge, but also annoying. Friday -- three more days -- we go in to begin preparing for the chemoradiation phase of this treatment. Anxiety is setting in a bit. I know Jerry wants to avoid the PEG but I know I somehow should probably insist. I'm hoping the doctors insist -- or I should say "highly recommend" so I'm not left with the battle. But battle I will if it will save him from further complications later into the treatment.

I do hope that each of you were able to enjoy the holidays as best you couldl! Ours was a bit different but just being together was priceless! Thank you all for your support and wisdom! Take care!

Happy New Years Gayle!!

I'm happy to hear that you and Jerry were able to enjoy the holidays together, those are the moments and memories to hold onto during the tough times to come.

Please continue to use these boards for support when going through chemo/rads and let us know how you are doing, we are in your corner my dear. It's always a comfort knowing that there are people in your corner that can relate to what you are going through and can help steer you clear of some of the pitfalls of treatment.

Keep your chin up Gayle! It was good to hear from you my dear

Eric

Happy New Year to Everyone! My hope is that you each were blessed with special times together with those you love! I am ever thankful for the time that Jerry and I were able to spend together with our little family � two kids, two doggies! It was a bit different Christmas �missed the grammas and siblings and little ones, but have so much to be thankful for!

Last week we started the �planning� for phase two � the chemo-radiation. This site has been a huge source of support and knowledge to help me to best prepare for caring for my husband. I have to confess, however, there are some posts I read that simply scare the crap out of me! No one really knows how they will respond to the treatment. And of course I am praying that Jerry will �weather� it as best anyone can! He is willing to suffer whatever short-term misery he must to assure this disease never comes back again, however, it�s the long-term quality of life impacts that scare him the most.
The original RO at our initial consultation stated that dependent on his response to the induction chemo and the fact he had never smoked, they may be able to consider a lightened dose and perhaps only target the affected side of his neck, not both sides. Jerry�s response to the induction chemo was awesome! In fact, looking at the CT done this past week to prepare for design, there is no sign of any tumor life left! Again, feeling very blessed. However, the new RO still wants to the throw the kitchen sink at it � not sure what �it� is since nothing is there. I assume they want to �blast� the former tumor beds and the nodes and who knows. Seems reasonable and probably right � and yes, I am very ignorant! � but why the full dose of radiation? And what is that full dose? From the original consult, I recall varying levels of strengths � strongest at tumor (now tumor bed) and then two lowered levels of surrounding areas?

I am feeling so scared about this and reasonable ashamed that I am so scared! What a wussy I am! I�m just on the sidelines able to painlessly swallow and eat and� but I know I have to be strong for him; that I have to keep him swallowing and eating. I am hopeful that he will go through with the PEG. He keeps telling me he�s not going to do it yet nods in compliance when the doctors highly recommend he get one. I so so love my husband, but he can be a very stubborn man and I know he will test that on me. And I have to stand strong. There�s a part of me that understands how post cancer treatment couples sadly separate. I am so �tender� with him and afraid to get angry or mad at him because I feel so sorry for him, that well, I guess the caregiver can bottle it all up and then when it�s over be �I�m outta here!� needing to breathe. I may get some counseling myself because again, I love this man madly and want to remain strong for him, and want to be his informed advocate when he is faced with decisions regarding his treatment and care needs. Wow! See right now I am already feeling guilty because I have turned this on me and not him. And he is the victim here. He is the patient that is preparing to go into hell � again, and even harder. Cancer sucks! It took my dad and my brother and no way is it taking my husband!

So, why am I posting other than to vent? (thanks for allowing me to feel safe to do so!). I�m wondering if there are options to customize the radiation dosages and if anyone feels it worth me pushing the doctors to reconsider a more customized dosage plan? Worth asking, or is dosage pretty standard and that�s it? Also, Jerry badly wants to attend our daughter�s graduation from flight school. Please do not trivialize the desire of my husband to be there. Our daughter has wanted to be a pilot since she was 6 years still old! We�ve watched her and supported this dream for 18 years and now as she graduates from flight training we want to be there! Both of us! Based on the current �planned� treatment schedule he will be at the end of 18 radiation doses� Thoughts? (FYI, the MO is planning to lighten the Cisplatin). The MO feels Jerry is young enough and healthy enough that he will still be feeling pretty good at this time - especially with the lightened chemo component -- and feels we should pursue it! If Jerry does feel rotten then, well, obviously, he will not go. But the MO made a good point stating that wouldn�t you just hate yourself if you did not go and sat back in Denver feeling fine and wishing you were there! So, I am exploring airline tickets to get him to Texas but of course big price difference in fully-refundable vs. non. Just looking for feedback, thoughts, experiences.

Thank you everyone for your being so selfless with sharing your knowledge and thoughts, and your experience and advice. Do not remember how I found this site, but boy am I thankful I did! Hugs to all of you and wishes for healthy, happy days!!!!

Making travel plans when your husband has done 18 rad treatments is very ify. Of course everyone responds in their own way to everything and some sail right thru. For most of us we began feeling pretty lousy about the 3rd or 4th week of rads. Alot of how bad we felt was also due to chemo. Weekly doses of chemo seem to be better tolerated. I was scheduled for 3 big doses of cisplatin. After the first one I felt pretty bad so the second dose was cut way back and the third one canceled. That was just my experiences.

Being younger, he has a good chance of not having such a difficult time. Nutrition and hydration will play a huge role in how he gets thru this. Keeping up with 2500+ calories and 48+ oz of water daily will make help him to get thru it easier. Cant skimp one day thinking to make it up the next, that only leads to becoming malnourished and dehydrated.

I think its a great idea to have goals. Having the graduation to look forward to may give your husband something to work towards. It might help him to stay focused and push him to get the best nutrition and hydration he can. Everybody needs a reason to get up in the morning. Being a parent, seeing your child graduate is something not to be missed. Just be especially careful with germs and using the hand sanitizers as traveling while your immune system is low is risky.

Gayle wrote:

"I�m wondering if there are options to customize the radiation dosages and if anyone feels it worth me pushing the doctors to reconsider a more customized dosage plan?"

If the tumor is HPV positive, they are starting to look at a slightly lower dose after induction therapy in a couple of clinical trials. You could take a look on the National Cancer Institute site, and maybe reference a specific clinical trial when you talk to the doctors. That said, radiation dosage and administration is very complex. The danger is that if they don't zap it hard enough, it may come back. I've read some of the protocols, and they make my head hurt.

About your daughter's graduation - yes, go for it. My husband was still riding at that point. Just make sure he has a place to rest - the fatigue will start being an issue at some point.

Best wishes to you and your dear soldier.

[quote=Gayle]So, I am exploring airline tickets to get him to Texas but of course big price difference in fully-refundable vs. non. Just looking for feedback, thoughts, experiences.[/quote]
Have you considered getting the cheaper tickets and also getting travel insurance? Most have a "cancel for medical reasons" clause, and some allow you to cancel for any reason.

In September 2010 we bought non-refundable tickets for a trip overseas to visit our son in early 2011. There was a small possibility that my husband was going to have to have back surgery (not cancer-related) sometime before the trip, so I looked into travel insurance. We are members of USAA, and its travel insurance affiliate offered a "cancel for any reason" clause -- while the premiums were 50% higher than for the same policy without that clause, it still wasn't that expensive. (And as it turned out, he didn't need to have surgery -- but it still was worth the peace of mind to know that we could have canceled the trip if we needed to. I believe that at the time we purchased our policy it offered a full refund; now I see it's a 75% refund -- but that's better than nothing.)

I'd think the insurance cost, even with the "cancel for any reason" extra, would be less that the price difference between fully refundable and non-refundable tickets. Note that some policies include a waiver for pre-existing conditions (thus allowing you to cancel because of a pre-existing condition) as long as you purchase the insurance within a few days of getting your tickets and the persons being insured were medically able to travel on the day the tickets were bought, so perhaps you could avoid the "cancel for any reason" extra. As always with such things, read the fine print carefully; if you have questions, call the company (and take good notes!).

If you decide to get travel insurance, I'd suggest buying it separately, and not from the little popup or tick-the-box-if-you-want-it on your airline or travel agency website -- that way you can more easily customize the insurance policy for what YOU would need. If you are members of USAA, search for "travel insurance" on the USAA website -- the link to the affiliate is under "Cruises & Travel Insurance" in the search results (the page itself is titled "Vacations and Travel Insurance"). If you're not, you can go to insuremytrip.com (which offers policies from several companies) or travelguard.com -- both are reputable and have a wide choice of policies/coverage. You can at least price it out and see it works for you before going ahead and purchasing your tickets.

Check with your credit card company - visa (our visa) has. Cancellelation insurance built in. No extra fees... I discovered this this year!

Hydration was titanically important in my treatment. I cannot express how important full hydration really is. My worst moments, a few of them very dangerous, were because I was not properly hydrating. It's so easy to just go to bed and sleep the day away since you are feeling crappy anyway. I ended up in the ER three times that way. And for the patient, it's very easy to lose track of how much you are hydrating with everything going on, not to mention all the drugs make forgetting things quite common. The water also helps you to keep swallowing, which exercises the muscles and keeps them in shape. So water water water. Water is life. Have some and then have some more!

Also, please do not be so hard on yourself as a caregiver. This is in many ways even more emotionally taxing for them. The patient often becomes very focused in their attention and are concentrating on just putting one foot in front of the other. The magnitude of everything is often lost to them between dealing with pain and sickness and of course... the drugs. But the caregiver is often assaulted with the full totality of the struggle and it can be entirely overwhelming. My hubby shut down a few times from it when he refused to take a breather. You are no good to your husband if you aren't also treating your OWN struggle. Take a break. Ask for help. Talk to people you trust about your experiences and frustrations. Whatever you need to do in order to maintain a level of commitment that gets him through this.

And remember to always keep love at the front of all you do. The love is the light that cannot be extinguished. It burns as long as we breathe life into it. So remember to breathe. Remember to breathe. You can get through this. You can.

And some airlines (Southwest for sure) let you cancel and reschedule without losing anything, which is a good option if you think your plans will include travel at some point later.

Sounds like you and your husband are doing well considering what it is you and he (and all of us) have to go through.
I agree that you need to take time for yourself. And he will get mad at you at some point just because you are normal and can eat and drink without pain, etc. He may internalize it, but it likely will be there. We are humans, what else can we expect?

I don't know about the lighter treatment, it depends. I'd sure want to get more than one opinion on that; you want to get it done right now! I know they decide the radiation gy dose based upon tumor size, and probably other tumor factors. HPV might be a different story from "regular" scc. I had radiation & chemo to chase the possibility of microscopic cancer leftovers! You never know if you needed it or not if you have good results. I don't regret it despite the side effects.

I sure don't blame you two for wanting to be at your daughter's graduation. Hope it all works out.

Best,
Anne

Thank you everyone for your thoughts, advice and support. I was unaware that I had responses coming in. Thank YOU!

Jerry just finished his first week of chemo-rads. Only got four treatments in because the machine was not working Tuesday (that's kinda scary in my mind!?). Anyway, he wrapped up Friday and we met with the radiation oncologist. My first time with him since I had my last work trip. The RO explained the treatment plan with me. He is indeed planning to fire this thing with full guns. Based on what I heard from him, and other entries I have been trying to get through, I have several questions:
1. Cisplatin vs Carboplatin: My husband was already hearing challenged and while he responded well to the induction chemo treat using Cisplatin, looking for thoughts about changing over now to the Carbo for this phase of chemo-radiation.
2. The mandibule: At 70 Gy, is there any protection that can be requested for the mandibule? The RO said he has never had a patient who has had problems from the high dose, but it appears to me unless I am misreading the entries � and I can misinterpret fairly easy � that mandibule issues are not uncommon?
3. Dental: Although he has already started this week, again after doing some catch-up reading, should I be pursuing a tray for fluoride treatments or are there options just as effective.
4. Recommendations for other comforts:
a. moisturizers/lotions
b. humidifiers
c. mouth wash
d. toothpaste
e. antacids
f. anti-nausea meds that have worked best. We have Rx�s for dexamethasone, zofran (ondancetron), Compazine (excuse my misspellings)

Jerry is also scheduled for his PEG Friday. He�s agreeable when talking to a doctor, but as soon as we leave the office, he tells me he�s not going to do it. Argh! Bless his heart! I would not want one either. I mean who does! But seems best to have and not use than to get caught without one and need it. Hopefully he�ll recover as readily having eight doses of radiation going.

I cannot begin to tell each of you how very grateful I am for your feedback and thankful for this site. I have been feeling really lost for a couple of weeks and while I wanted to come in then, I have been down enough that I was afraid to. This is great site for information and advice and voices of experience, but bottomline, HN cancer and its treatment really sucks. Hard for me to read about still. Thank you. Thank you! Blessings and Hugs to each of you!

Hi, Gayle
my husband's therapy machine went down more than once - scared me, too, but they always got it working again. The RO will have a plan for 'make up' sessions if it is needed. Missing a time or two is normal.

1. Cisplatin vs Carboplatin: don't know.
2. The mandibule: with a tonsil cancer, they are not concentrating the dose directly at the mandible - it's not going to get the full blast. There are problems with ORN as a late effect but its not a sure thing. My husband's RO emphasized that nutrition (not just calories) was important to rebuild tissue and bone.
3. Dental: go for the trays asap. He will need to get them made by taking an impression, and that may be too uncomfortable soon. He may need to take some time off from the trays as the radiation gets intense. The trays will be there for the long term.
4. Recommendations for other comforts:
a. moisturizers/lotions - aquaphor (by Eucerin) after the radiation session. Toward the end of the therapy, the RO switched him over to burn cream.
b. humidifiers - yes - we have a Honeywell Invisible mist. Also, the white noise helps ME sleep.
c. mouth wash - Biotene.
d. toothpaste - Biotene.

*** tooth brush ***
He will want a VERY soft one. I couldn't find one for adults ...so I got him a Sponge Bob one. Made him laugh.

e & f - don't know.

Other stuff:

'Magic Mouthwash" or "BMX" - get this before he needs it.

If (when) he goes on narcotic pain meds, don't let the constipation from them get out of hand.

Hugs back to you, Gayle.

Well, I started this email train with one week down... we are now down to one week remaining. I'd like to say how happy we are to be seeing the "light" at this end of this four-month ordeal, but this week Jerry has been hit by the full force of the treatment effects.

I thank God that he finally submitted to getting a feeding tube because he can no longer eat, nor really swallow. He started the patch yesterday and the doctor doubled his oxy -- which he is resistant to take but he has again agreed to do so due to the extreme pain. Neither one of us do well with pain meds -- make us quite nauseous on their own -- but I worry that he is getting sick possibly because he is in so much pain.

Doc also wrote a script for some morphin dissolving tab but Jerry does not want to try yet. Wants to give the patch a chance and we were told it takes about three days to become effective. That's fair. He says his pain level is at an 8; reserving 10 for childbirth he says, well that means he is at a 9 with three weeks to go as I have read here. I'm doing my best to feed him close to 2500 cals and I think I recall 48 oz of water.

He has for the past three nights thrown up around the same time each night. Since we are done with the chemo component and only have 5-7 blasts left, I'm hoping the nausea will subside so he can take the full measure of pain meds. He's already lost 23 lbs and was not overweight to begin with. I tried to 'fatten him up' before treatment started but he's lost all that and more.

We had to do the suppository last night. While I know there is not much there to move out, nonetheless, know that those toxins need to be moved out. Thank goodness it worked.

Not sure why I'm here. Just needed to share some of the ugliness with a group that knows it to be the norm -- at least if I'm sharing anything that is not, please inform my ignorance. The family and friends -- while they truly care -- would not benefit from hearing how awful he really does feel. In fact, he cannot really talk due to the pain so I've been making calls for him as well this a.m. I cannot wait for the next three weeks to go by!

Thank you for listening to me unload! I look at all of you who have made it through this ugly treatment phase and those going through and tell you how special and strong you are! And then to take the time to come to this site and share your experiences to help those of us, well, you are all angels and I pray for your health and quality of life! Bless each of you!

Hi Gayle

Alex had a similar treatment, did really well with the chemorads (although this is relative as his complications during chemo were catastrophic, making the chemorads a picnic by comparison).

However, about 1 week from end of treatment, pain became too much and nausea and vomiting needed managing. The nausea and reflux persisted for around 6-12 months and we now believe the original chemo had an ongoing effect on his entire Gastro-intestinal tract that Alex still has his moments with.

He continues to take an anti-reflux medication (Somac) and took a short acting anti nauseant just before he got out of bed in the mornings (he used to lie in bed for about half an hour as we thought being vertical might be setting him off) and in the evenings before the bulk of his nutrition was administered via PEG.

Painwise, he took the fentanyl patches, long acting oxycodone and short acting oxycodone. This went for 3 weeks (from exactly where you are now to 2 weeks after treatment), then tapered to just the 2 oxycodones before withdrawing from all pain medication when the ulcers started disappearing.

Despite the worst period still being in front of us, the end of radiation was cause for a great deal of relief and a strange sense of anti-climax. We thought of it as being at the bottom of the hole and looking up to the sunlight for the first time in 6 months where previously we had been sliding into that hole. Alex checked himself out every morning and regularly told me that he was lucky today as he wasn't too bad which meant even if tomorrow was awful, it was one less day of suffering to consider.

May I suggest you keep track of his "good" and bad days as in a couple of months time when your husband is frustrated by his perceived lack of progress you will be able to reassure him that he has indeed progressed and that this time last month he had 3 good days and 4 bad ones in a week, this week he had had 6 good days and 1 bad one. Progress is slow and survivors may need reminders and examples of how far they have come. They may be unable to see it themselves.

Watch for confusion/concentration issues caused by chemo too - Alex described it as his thoughts being tangled. The confusion often manifested as irritability as he tried to make sense of something I might have just said that made no sense because he had already forgotten the context. If Jerry feels this, let me know as there are things to help this too and it does eventually go away.

And remember if he snaps at you, he really thinks you are a goddess but the pain and the pain killers and the frustration are giving him a hard time

Im so sorry Jerry has begun to feel lousy. At least he is almost finished so only a few more weeks before he will begin to feel a little better.

A couple things in your post caught my attention...

The fentanyl pain patch takes up to 24 hours to kick in. If its been past 24 hours and Jerry has not felt any relief, call the doc and tell them you need a stronger patch. A starter dose should be 25 or 50 mg, if it doesnt work its ok to increase it. The fentanyl patch can go up to 150mg which is the highest most people take. Be careful with them! Read all instructions and follow them to a T! No hot showers or baths, never cut or fold the patches. If those things occur it could lead to an overdose of the medication. Being in pain does NOT help the patient.

I know it hurts to swallow, but Jerry must continue to take small sips of water a few times a day. He will have bigger problems later if he doesnt keep those muscles active.

Nutrition is the key to thins whole thing. Push to get him to take in a minimum of 2500 calories every single day. Water should be not a drop less than 48oz per day. If possible shoot for higher on both things, like 3500 calories and 64 oz water daily. This will make a huge difference in how Jerry feels. If he doesnt get enough even for one day it cant be made up for on the next day. If he doesnt get enough on a regular basis, he will need to get an hydration IV at the hospital or could be hospitalized for malnutrition and dehydration. Thats how important this is. I ended up being hospitalized a couple times for this so I know what Im talking about.

I wish you both the very best with everything. Please keep us posted and if you have questions, we are here for you. Good luck!

Hi Gayle,
I remember these last few weeks only too well. You truly are doing a great job. You're right too, at this point you can see the light at the end of the tunnel. Just a little bit longer.
As you look back at your time isn't it amazing how far you have come? Where we are, 4 months out of tx, it seems like it was so long ago. The after effects (affects?) linger, but the constant pain is gone.
When I read one of your posts and you said you didn't want to be mean I had to laugh. I remember at one of our Dr appts Kevin was groveling about something and giving the nurse a bit of a hard time. I finally said " Ok Debbie, thanks for your help, but we are done with this." She just looked at me and I told Kevin to get up and we were going home. I told him that if he was going to be a ---- then he really wasn't interested in what was best for him so none of us were putting anymore time into him. He just looked at me and said " I didn't say I wouldn't do it, I was just complaining about it." He had been complaining loudly and it was awful. So I said "so, you're going to do what they are telling you and the groveling is going to stop?" He said yes and it did. Sheesh...did he think any of us were having fun??!! We laugh about it now. He is 6 feet tall and I'm 4'11, and here I was treating him like a kid. But it straightened his attitude out and he got amazingly positive after that. I think he realized he had fallen into the "poor me" trap and fought to get out of it. After that he became the chemo/radiation rooms clown. I can't tell you how many friends we made and people I prayed for because I wasn't having to worry about him as much.
All this to just say your comment made me laugh at the memory.
The caregiver roll is soo unbelievably hard. Keeping it all going plus watching our loved one go through it all is just overwhelming. I found this site when we got to our last week. Before that I was on my own and all our friends seemed to disappear. And like you said, his family really didn't want to hear ANY negative so I didn't have anywhere to vent. I just got in the shower and cried! Then I started talking to the nurses and they were a tremendous help. Then we found this site! What a Godsend!!!
Hang in there. Keep venting here. We have a follow up PET this month on the 12th which is causing me quite a bit of anxiety, but I am keeping it under wraps, except for on here, because "nobody wants to hear it!"
Oh, we also used the Biotene products, an extra soft toothbrush, the BMX and the Aquaphor. Once the outside radiation burns started we switched to the Silvadene cream. We also put a bandage over it so his shirt collars didn't scrape.
The pharmacist told us that the patch would be at full effect in 24 hours, so....
Blessings,
Kathy

Just wanted to let you know that I have been following your story. My husband was diagnosed on the same day. Rick didn't have the induction chemo but did the weekly chemo/7 weeks rads thing, finishing the chemo Feb 1 and rads on Feb 10.

I'll post an update on Rick's status some other time and don't want to take over your thread but would like to say that it all sounds very familiar. But now, a short 3 weeks out, our world looks very different. While he still has a massive hole to climb out of, he's got some spark back and it is such a joy. You'll experience this, too, although there is no telling when it will occur.

Now here are words of caution from a fellow caregiver who has just emerged from the other side..................

Since the 26th of October I've had my foot on the accelerator. This has been full on and all consuming. Just when I'd get a grip on one issue, something else would take its place. The ground shifted then shifted again and again. The second to the last day of rads he finally ended up in the hospital due to dehydration, malnutrition and anemia. (Christine goes, "Tsk,tsk, I try to tell you all.") And there he stayed for 8 days. The man I brought home, while still really unwell, was markedly improved.

So about 2 weeks ago I finally got to take my foot off the accelerator and you'd think I'd be happy but instead I've been moody and irritable. Me thinks it has been a normal reaction on my part to an abnormal situation. That things finally settled to a point where I did some letting go. That it is my heart and head's way of dealing with what's happened before I knuckle down and get on with life. And that it is an acknowledgement of the enormous fear and grief that is just below the surface.

Allow yourself to feel however you want when you finally get to come up for air. You'll have earned it.

So, so true. I had forgotten about the crazy emotions at the end. Good point to bring up. IT'S NORMAL!! ;o)

Thank you so much for sharing your time and experiences. I believe the patch might be kicking in a a bit. Hope so. And Christine thank you for the reminder about hot showers with the patch. While I read it in the literature earlier, well, to be honest, I had completely forgotten, and just today we were planning to get him into the shower - argh! Wish I had a memory!

Jerry does well with water -- by tube and mouth -- but food thru tube has not been complete success. Every night about eight he throws up (ouch!), and then today, during a feeding it just stopped flowing in. We tried to put water in but it would not go either. Gave it another 30 mins and was able to get 4 oz thru. Then at the onset of the next feeding a couple hours later, right after hooking up and before pouring in liquid food, Jerry coughed. The vial filled up with stomach liquid and then did not want to go back. Gave it a few minutes and put water in, not the food. Went thru ok and we went ahead and put in the 12 oz of food. Since he cannot eat by mouth anymore, and the only 'food' we were provided by the nutritionist, is a whole 375 cal per can, I am trying to get 6-7 cans in a day. And since he gets ill around 8 p.m., have been trying to get them in before 6:30 7:00 which means an 8-oz can about every 2 hrs. Is that too often? Could his stomach be backing up? We see the doctor tomorrow and I believe it is a question worth asking -- especially if his weight has dropped even further -- but thought I'd get out to this group for any thoughts, recommendations, scoldings... Thank you! I am being paged. Thank you again!

Are you flushing the tube after every feeding. Regular coca cola actually works very well to clear the tube. Just a little after each can. That's what we did...don't know that that is the norm, but my best friend is an oncologist nurse and she said that's what they recommend. It never plugged, so I guess it worked!
Have you tried a nausea pill around 7:30? I'll be darned if I can remember the name of it, but it calmed Kevin's stomach within about 5 minutes. Started with a G, I think.
You are doing so great!!

Have been flushing the tube after each use but only with water. Maybe we'll give the cola a shot. Jerry pretty much stopped the dex and zafron anti-nausea meds; trying to only use compazine but it's not stopping the evening episode. If you remember the "G" pill, please let us know! Thank you so much!!!
P.S. How much cola did you use? Guess I don't have to worry about diet or not! Thanks again!

Ok...so much for the G name. It is the generic for compazine that he took for the short term basis. Did not start with a G! The long term (12 hour) was Granisetron Hydrochloride. That's the G I was thinking about!!
It is supposed to be regular coke, not diet. I didn't really understand why, we just went and got some and did it!!
Dr today?

Thank you Kathy! Thankfully, Jerry made it last night without throwing up! After almost a week of being unable to get through a night, well, a big yahoo! I know it had nothing to do with it but I got him to chew some gum after his last feeding. It's like your body has all these queues within the digestive process. The chewing stimulates this, generates that, prompts this. I have to wonder with a feeding tube when the food is just suddenly "there" that the stomach must wonder "what the heck?" Anyway, such thoughts and actions keep our minds on 'other' things.

So anyway, without throwing up, that means he was able to keep a whole 1700 cal in. I know that is not enough and I also know you cannot make it up but what good does it do to push in the 2500 knowing he'll 'toss' the last 800. Hopefully, last night was a turning point and I can get him up the 2500 min today. Also, Mondays are his usual chemo days. Last Monday was 6th dose so chemo is done! That is encouraging to him, well, both of us! And perhaps might help reduce the nausea and vomiting as well. We're hoping. Now if he can just get some relief from other end. Utilizing good old Ducolax for that but the fact he is 100 percent on canned tube feedings I have to wonder how much solids are generated. I'll be asking doctor, but are there any thoughts for how many days go by without success before doing the ducolax?

Thank you again! Big Hugs to all!
P.S. I had no doubt the full-caloric cola is the best! Heck, the 4 or so ounces would only add a few calories which we so need right now!

If you dont already have one, get a feeding pump. This way while he sleeps the pump can run slowly getting all of the necessary nutrition he needs. If you use the pump make sure to prop him up in bed while the pump runs. Part of the reason your husband has trouble keeping down the formula could be the speed that it goes in. I can not do the gravity or push methods of feeding or I will puke. The only way I am able to get the formula in is thru the feeding pump. Usually nausea can be solved when using feeding formulas either by slowing down the feeding rate or by adding water. Of course nausea caused by chemo is in a class by itself where only strong anti-nausea meds will help that.

My nutritionist has told me to add fiber to my canned formula. Its easily found in any grocery store or drug store. I get the green jar of benefiber or citrucel. This is one thing where I do not follow their directions. It says to use up to 3 rounded tablespoons per day. In my own opinion, the directions are for normal people who do eat other fiber in their diets thru out the day. I add 4 or 5 tablespoons to my formula and shake the bag up real good. Then I let the pump run while I sleep.

Hope these tips help!

Thank you! Am inquiring about the pump today!

Good! If you need pointers let me know.

Hi, Gayle - just wanted to add my best wishes - it seems that you are soldiering through this together. I have a feeling that Christine's tips will help with the nutrition. Be sure to look for crocuses and other signs of spring - my husband completed therapy about this time last year, and it made spring very special for us when it finally arrived.

Maria

Hi Gayle,
Have been thinking about you guys. How are things?
Kathy

Today is one week out of radiation. Jerry actually got blasted three times within 24 hours to make up for a missed treatment.. No cutting short the 33 here! Argh! But it's done! We've been home for a week now. Yahoo! Yahoo!

It's been rough. Not unexpected as this site and our docs prepared us for these couple weeks of radiation continuing to be active. We have doubled the fentanyl patch dosage and switched out from oxy to morphine. He is still in terrible pain but toughing it. Will not, however, swallow or take anything by mouth. He said he will gladly relearn how to swallow because its too painful to swallow now (should I be pushing him?). He cannot talk more than a whisper. I'm not too concerned about the throat sealing itself closed -- as was one of the warnings -- because he is always coughing up crud. In my ignorant mind I have to believe it is the inside of his throat sloughly off. (No where but here could I share that! - People just do not want to know!).

He has started getting severe heartburn again which causes him to throw up - ouch! big ouch! I imagine pouring vinegar on an open wound. I dissolved some antacid in his food this am.
His mouth sores are still very painful. I believe I have stayed on most things -- but the manuka (sp?) honey slipped thru my brain. Was that something that might help his mouth pain? And where do I get it? I looked it up but the recipe was too vague for my non-functioning brain.

We both put on positive fronts thinking that if you wear it hard enough it'll sink in. Our neighbor across the street has been going through treatments since last summer for liver cancer. My daughters classmate was diagnosed with hodgkins lymphoma in his neck and they tell him the treatments for this cancer will result in him getting leukemnia (what?). Guess what I am saying is that we count our blessings each day and hope tomorrow is a bit better -- at least no worse.

I do not know how individuals, families go through events like these without a support group. I again am so ever thankful I found this one! You have kept this caregiver from flipping out. Thank you!!! Thank you so very much! Hugs to all!

Congrats on finishing!!!! I know he feels horrible but very very soon things will turn around. Radiation continues to keep working even after tx has ended. In 2 or 3 weeks he should begin to feel a tiny bit better. Then it will be small improvements for the next couple weeks. It can be a frustrating time making progress then taking a couple steps backwards with setbacks.

Keep pushing the nutrition and hydration. Force him to take small sips every single day. If nausea is a problem slow down the feedings and add water. This will help make them easier to tolerate. This is why the feeding pump becomes such a great tool. Can add water to the bag of formula and regulate the speed so its able to be kept down.

Hang in there, the light at the end of the tunnel is in sight!

Right there with you Gayle. I don't know what I would do without my cyber friends and fellow warriors.
I'm sooo glad you updated. Have been thinking of you guys and praying all was well. Hang in there.
Kathy

The roller coaster continues. Can anyone tell me if significant coughing is part of this healing process? Poor guy coughs and coughs. I understand the throat clearing, but this seems more than that. Keeps him from getting any real rest.

Thank you!

Its probably the thick mucous bothering him. I would cough alot trying to get it out of my windpipe. Many people have rented a suction machine from their medical supply company. Needs a doctors prescription. Every time you take him to the doctor, ask the nurses to suction him out. This will make it easier on him. When coughing so much, your body begins to ache. Im sure he feels lousy enough not to need any more aches and pains. Pick up some Musinex or Robotussin for mucous.

Hang in there, day by day you will very soon begin to see small improvements. Try to begin to set very small daily goals. I would set a goal to walk to the mailbox, then to the end of my street, next down the block and back. Within about 2 weeks, I was walking around the block, enjoying the fresh air. This helps the patient to see their own progress and begin to feel like they have accomplished something.

When the mucous goes away, it will be replaced with dry mouth. Your husband will wake in the night with his tongue stuck to the roof of his mouth. He will need to carry a water bottle with him everywhere. Some members (not me) found success with a medicine pilocarpine (not sure of the spelling). It helps create saliva but it also will make him sweat. Others use biotene products or some disovable strips that they put on the roof of their mouth. That is over the counter in the toothpaste aisle of drug stores.

Best wishes with your husbands continued recovery.

Thank you Christine! You are right - he is miserable. Said this morning that this has to stop. Thoughts about interactions from mucinex or robitussin with all other drugs he remains on? Probably should consult with doctor to be safe, eh? Our doctor is excellent about responding to emails. I'll kick one off now, but again, now I have some background that it is not uncommon and that an OTC med may help alleviate some of the coughing. Thank you thank you! Have a great Saturday! It is beautiful here and would love to get him out for a walk! Take care! Big Hugs!

Hi, Gayle - it's possible that running a humidifier and sleeping in a more upright position might help. Possible benefit of coughing ... his core muscles will be in good shape. My husband found that out he got back to riding (he coughed a lot, too).
Hope that you both enjoy the day and the walk!

Gayle - My son also used a humidifier and slept in a recliner so he could be more elevated. He found that a plant mister helped (has a finer spray than a regular spray bottle) to moisten his mouth at night when he work up. It was easy to reach for and he didn't have to wake up completely to get some relief. Things DO get better.

This was one of the hardest parts for Kevin, and me. I kept thinking he was going to choke to death!! The gagging was awful. Lot's of water is what he did. I would check with your doc, like you said, before adding anything OTC. It may somehow make it worse because it's not like phlegm from a cold that you can dry up. At least I don't think it is. Kevin did find that walking around helped him to cough more of it up. Sleeping upright helped too.
Our friend Cathy on these forums and FB gave us some tablets that help with dry mouth. I will look at the name of them again. You're not ready for them yet, but soon will be. You can get them on Amazon. Will let you know.
Hang in there. Try the outside walk. Just a new scenery.
Kathy

Thank you all again! Jerry seems so depressed this morning. As you can imagine, the coughing makes his throat hurt worse and keeps him from getting any solid rest, but hopefully soon, as everyone says, it'll subside. Doc did approve Robitussen yesterday. Not sure if it helped or not yet but may need some time to be effective. He sounds so like he wants to give up and after all of this. I keep trying to note the minute improvements (have to look hard!) The antacids are starting to be effective so at least he does not have heartburn on top of everything else -- small victories, small victories.

I do have concern tho about his not swallowing yet, or even wanting to try. Am I babying him? Is it time for tough love or maybe just more pain meds to get him swallowing again? He is currently on 50mg patch an, 20 mg morphine/oxy.

Thank you everyone!

P.S. He does sleep sitting up mostly -- have one of those chair backs for bed, and he has a humidifier right next to the bed. Thinking I may pull another in from another room and really humidify the room!

Gayle -
Remember that the lack activity is contributing to the depression - endorphens aren't getting a boost. I truly belive that walking our old dog every day helped - also it made him feel more worthwhile and needed.
You might also ask him for something - maybe a shoulder rub? If he's anything like my husband, he's feeling like he's not carrying his part of the load. Not true, of course, but this isn't a rational things.
You could ask the doctor about better living through chemistry if the depression part seems to be an ongoing concern. Some pain relievers work well for their job, but don't make you feel fabulous mentally. Yes, ask about the level of pain relieve, too. My husband found the topicals useful, too.
Hum, about the swallowing. If a doctor or physical therapist 'ordered' it, your tough love would just be following up on professional orders. Chain of command sort of thing. That would also mean that the swallowing was specifically address medically, not a bad thing.
Keep the faith, Gayle - try to get a lunch out with a friend sometime and put the burden down for a bit.
Maria

Does he have the magic mouthwash? If he can swish and gargle that and then chug an Ensure or something at least he will keep the swallowing reflexes going. Having to learn to reswallow will not be fun. I do believe it is time for tough love. I remember telling Kevin that he was not the only one going through it and it was time to start being a little more mature about things. It worked. He got mad at me, but then he got better. I don't think more pain meds will help as they are probably what's making him feel yucky. I know we tried the patch and Kevin got down right nasty. After that we just used Lortab and the magic mouthwash. The Lortab made him very HAPPY!! Mellowed him right out. I'm pretty sure he took that at the same time as the patch too, so that might be able to be done. You can ask. Also what I did was ask for Xanax for Kevin. Just 1 25mg tablet helped him to relax and think clearer. Then he was willing to go out and walk a bit. Not much, but enough to help with the phlegm. If it would help Kevin could call him. If he wants to talk pm me the number and I know Kevin would be available.
This really is the HARD part.