Hi All,
I am newly diagnosed with an HPV positve P16 cancer that is in my nodes with a primary on the very back of the tongue. Tomorrow, I am going to have surgery, a neck dissection. I am hoping to find some advice for what to bring to surgery and what I can expect. Anything I should pack? Will I be able to move my arms to put on a shirt?

My tongue is still hurting so much from a biopsy I had two weeks ago.

I was given my treatment plan two days ago, on Thursday. I was not prepared for this but it's for the best to move as quickly as possible because it feels like more nodes are becoming involved. I put as much info as I could remember in my signature. The neck dissection is first because they are unable to treat my neck with radiation because of previous rads when I was treated for BC.

I will receive chemo and radiation in 6 weeks.

I am scared. Does anyone have any experience with AHCC and/or cannabis oil?

Maybe I am asking too many questions for a first post? Because of my surgery is tomorrow, I want to know about the neck dissection.

Feeling so upset.

Hello, welcome . So sorry that you have to join our groups you will get plenty of support and advice form others here who have also been in this situation.
What sort of neck dissection are you having? Radical? Modified? Bilateral, or one side. The type you have will have different effects on recovery.
Kris initially had a Right modified neck dissection of levels 2 - 4.
This was easy. He had no pain and recovery was quick.
6 months later he had a bilateral Radical neck dissection. This involved severing the nerve to the shoulder muscles and he needed a lot of physio therapy to help him regain movement.
I hope all goes well tomorrow . I'm sure your recovery will be fast and pain free.
Others will be along shortly to give you more encouragement and advice.
Christine will prep you up for the chem and rads. Heed all the advice and you will get through this.
Tammy

Thank you for replying Tammy.

I don't know what kind of dissection it is. I don't remember if they told me. It's going to be on the right side and a chain of nodes will be removed. Are the levels the level of the nodes?

They did give me warning about possible issues with the shoulder and facial muscles because of the nerves being touched and moved. It's a 3 hours surgery.

I hope your husband is recovering, I see 2014 ned, that is great.

Welcome to OCF! Sorry to hear of your diagnosis but glad you have found our site to help you get thru it.

As far as the remedies you mentioned, make sure you clear every single thing with your physician. Some things as simple as vitamins can actually interfere with treatments. Only thru conventional methods like radiation with or with or chemo and/or surgery will effectively eliminate the cancer.

Read and educate yourself both here and on the main OCF pages. An educated patient is a strong advocate.

QueenKong, my husband had a neck dissection last month, and I'm not sure what the right name for it is, but they removed 14 nodes with only one positive.

Doctors recommended physical therapy for shoulder, but we came home the same day of the surgery and my husband immediately started washing his car and moving his arms around. He couldn't stay still. I was worried, but the doctor seemed to be ok with the self imposed range of motion exercises.


My husband has not yet started radiation treatments. He reported some numbness in the side of the incision. Also, he felt pain when he tried to bite a large hamburger.

I pray that you have a positive outcome and things work out for the better.

Good luck!!!!

There are a number of type of neck dissections, which remove the Lymph nodes or a select chain of lymphs in levels l-VI, preserving all or one or more structures. Depending on the type of dissection, can have an effect on movement, and even touching neves can also impair them. These days most are modified radical neck dissections, MRND, instead of a radical neck dissection, RND, for the oropharynx, in levels ll-IV or ll-V, preserving one or more structures like the nerve, vein, neck muscle. You are usually there overnight or several days with a draining tube, and once that minimizes in accumulating fluids in the draining bulb, 1/3 way, they remove it or discharge you for later removal. My two hospitals put me in the head and neck "Step Down", like ICU for monitoring. The stitches are usually removed a week or two later. Previous radiated areas take longer to heal, and would have them removed in two weeks or later depending on healing.

I had 5 neck dissections. One was selected or limited whereby 2 cancerous Lymph nodes in two levels, II, III, were removed as ambulatory surgery, and required no draining tube, and it was under general anesthea, and a Pandendoscopy, with biopsies, was also undertaken. I ate a Big Mac on the way home.

I also had 3 radical neck dissections, RND, one which I was hospitalized overnight with a draining tube. Again, I ate a Big Mac, French fries, shake on the way home after discage, even a pastrami sandwich on rye another time. Two of the other dissections were more extensive, includung with IORT during surgery, more structures removed, required 4 days hospitization, but my range of moton, pain levels were good, and had the morphine in recovery, Percocet thereafter for a while. I eventually required PT sometime after, have newer issues, paralysis, but I'm talking about 5 years of consecutive treatments, and surgeries, so I can't really complain. Immediately after was not that difficult.

For me, surgery was the easiest, followed by radiation, and chemo was more difficult.

Here is an an OCF link describing the neck dissections: http://oralcancerfoundation.org/facts/neck-dissections.php

Good luck!

Sorry to see you here but glad you found OCF. What state or country do you live in? This makes a big difference as to what canibus options might be available. For many the active ingredients provide relief from stress, anxiety, insomnia, pain, etc. Depending on where are try to get tested product so what you get is free of pesticides, molds, etc.

I had my surgery today. It was a radical neck dissection level 2, 3, 4 or at least that is what I think the fellow said. I have two drain tubes, and a lot of stitches. It;s hard to swallow. They gave br broth & jello. I can move my shoulder but that side of my mouth is not working, hoping that is temporary. Crooked smile will be okay if my life is saved. They have me on morphine.

All the food talk about hamburgers has me hungry. I am supposed to be trying to gain weight til I have the radiation and chemo. From what you are all saying, it sounds difficult.

I will write more when I am no more awake.

Thank you everyone for your responses. It means a lot to hear from others out there. I was looking for some advice and support.

I am in NYC so not a legal state but decriminalized I think. They just passed some new rulings. I'll have to look it up. I will consult with whatever. I am doing. I saw a study for the AHCC that looked hopeful. I will try some things until treatments start in hopes of keeping it at bay.

I wonder if anyone has tried any alternatives.

I'm pretty impressed you are able to post already!

Hi and welcome to the family. Many have gone through exactly what you are doing. For some it was a little easier than for others, but all of us had discomfort along the way. While we had pretty much the same worries as you have now, we all got through it and you will too. The trick is to just take one day at a time and to spend no time wondering or worrying about what tomorrow or next week or next month will be like. Your only goal today is to get through today; tomorrow will take care of itself.

I was one of the lucky few who had minimal discomfort during and after treatment. That doesn't mean I had no problems, they just weren't horrible side effects like a few have. Where will you fit into the side effects spectrum; no one can predict that.

I didn't need much in the way of pain meds, in fact I still have most of the meds they prescribed for me. Long story short, I know nothing about medical marijuana. I also haven't heard a lot of discussion of the subject on the forum, so I suspect it's use by others here is fairly minimal.

You will do fine, it won't be easy, in fact some days will be hard, but you will get through them, come out the other end and then start putting your life back together. I'm right at 1 year post treatment and other than food still tasting bad have no other side effects to deal with of any consequence.

take care,
Tony

Congratulations on a successful surgery! The drool is common. I had that, still do from last weeks surgery. It's the anesthesia also, being intubated, other medications, nerve manipulation. It should resolve, but let your medical team know everything, they usually asked me to smile to see what nerves were effected, and writing the day of surgery is a good sign of your recovery. Just be careful of aspirating, fluids going to the lungs, which staff will tell you or have you sit up when eating, drinking, swallowing. They also had me use this gauge, like a little genie toy, to blow in, forget the name, to increase your lung capacity, get the fluids out of the lungs to prevent pneumonia, plus walking when advised and able to do so.

I'm in NYC also, and may have even bern treated the same hospitals. I've been to a few.

Btw, I haven't tried alternative medicine, seen plenty of quackery through the years, and the only proven way for a cure is through conventional treatment, but with the doctors approval, a healthy, well balanced diet can't hurt, mediating, reading, exercise, support groups, avoiding certain toxins and such.

As Tony said, don't worry about anything now. Get trough this, and take one day at a time.

Hi All,
I am back. Thank you for your words of support.

I am having severe pain today, so bad that I think something might be wrong. I had the stitches out yesterday and I was hoping I would have less pain but I am having more. I am taking some pain meds but it doesn't seem to help. It's hurts so much I am seeing stars. Not even sure if I am making sense. I thought it would hurt less. Why is it hurting more? I keep getting these jabbing pains and it is so tight.

I've tried moving as much as I can and I've been active. Anything I can do for the pain? Does this go away?

Im so sorry to hear you are hurting! Swelling can make things hurt as it usually means something is now pressing on a nerve. If you continue to be in alot of pain, dont delay go see your doc to get thoroughly checked out. Ask for stronger pain meds to help you manage the pain better. It is actually detrimental for a patient to suffer in pain, it also causes unneeded stress and worry.

I understand all too well the pain you are describing where it feels like you are being stabbed. Its enough to stop you dead in your tracks. Ive been thru that myself and its awful. If you arent already taking neurontin, ask your doc for a prescription for it. It was originally designed to help with seizures but it works great on nerve pain. The only other thing I can think of (if you can tolerate it) try icing the area that is hurting. The cold may help reduce any inflammation.

I hope you get some relief very soon.

Maybe the recent stitches removed caused some of the pain to worsen. Different or more pain meds may help. Calling the doctor service, going to the ER may help or waiting until tomorrow when their practices opens. Maybe moving around is not quite the activity to do until the cause is found.

Good luck.

Yes, ChristineB, the stabbing pain with a jab jab jab that makes one see stars. That is it. I am going to call tomorrow, going to ER here at this time would mean no sleep for me at all. I have oxycodone with aceta.

Is there a way to reduce the tightness? Did anyone try self massage? I've been trying some light lymph drainage and touching the area around the incision. Everything is so tight and sore, it's like a rock in there. I feel better when I do things but don't want to over do it.

I am eating fine, throat is swollen some but basically food is going down and I have to gain some weight. Do I really need to gain that much weight?

That you are eating normally and thinking about gaining weight is a positive sign showing you are successfully getting through this despite the (significant) pain. I said in my previous post that today all we have to do is figure out how to get through today, tomorrow will take care of itself. Well, sometimes when the pain is at it's worst (and you may be there right now), we figure out what we have to do to get through it hour by hour.

That you are able to write as well as you are doing is another indication that despite it seeming like it's really bad, that you are handling it quite well. You are being tested by this, not doubt about it, but you're not being found lacking. Even your choice of usernames shows a lot of strength.

So, go see the doc when you need too, be persistent with him/her until you get your needs met. Camp out on his doorstep if necessary, but get those needs met. You are learning how to be a good advocate for your own care. Doing that often looks like being the squeaky wheel in need of grease. I thought I was a royal pain in the side of my RO (radiation oncologist), but he said it was no problem at all because it showed I was really involved in my own care. Despite the extra work it creates for them, they actually like it when patients are good advocates for their own care. My doc said most patients were not good advocates. They wouldn't talk, wouldn't ask questions and didn't want to learn about their disease, it's treatment, or what they could do to make it better. That just makes everything harder on them.

Now, to answer your question, do you really need to gain that much weight? The answer is both a yes and a no. That you will lose weight in treatment is literally a guarantee. I've seen no one go through treatment and not lose weight. All I had was radiation and surgery (no chemo, because of no lymph node involvement), but I still lost 42 pounds; and I had very few side effects. I was able too and did eat pretty much normally throughout treatment. Now, I was a plump little donut before treatment began, so I had the extra weight to lose. But if I had been skinny before treatment that much weight loss would have created a medical emergency.

You don't know this yet, but will learn it soon enough. Lose too much weight, become malnourished and they both put you in the hospital (to feed you intravenously) AND they stop your cancer treatment until you regain weight and strength. You don't want them to stop your treatment in mid cycle, that's bad for you and good for the cancer. So, we tell all new members, to eat, eat, eat. It's way better to have some extra weight you can afford to lose than the alternative of losing weight you can't afford to lose. Besides that, you will lose a significant amount of your taste for food, so enjoy the things that taste good right now, because soon enough they won't taste good anymore. Ask us how we know this, like I said I'm one year post treatment and food still tastes mediocre to bad.

I've written too much already, keep fighting, you are doing great, you will win this battle.

Tony

QueenKong

My mother has gone to therpy after her radiation . Massages were done to losen up the tightness and swelling. As long as my mother walks around the house the swelling will go down but as soon as she gets back into bed BAM there it is again.Then pain gets worse when the swelling brews up.
The massages do help some but it doesnt totaly go away. Me and my family continue to massage my mothers face just to get that little bit of releif. Just barely touch the area very lightly and rub around and around. "very Lightly" because the nurse told me the fluid is just under the skin so dont press to hard at all.

Hope you feel better soon
Heidi

QueenKong I recommend gentle massage to help drain any build up of lymphatic fluid. Stephen my husband is 13 months post mandibulectomy/lymph removal and the swelling varies depending on his level of activity and the coldness of the weather.

A couple of months post radiation, his face got swollen very tightly. And within a few hours it was dark red and huge. He was about to fall asleep but I insisted he get up and look in the mirror. At that point, we got in the car and drove straight to the emergency. It was a little scary but we didn't panic. The staff at the emergency were very happy we showed up when we did because it was an infection. They told us that after radiation people are more prone to infections. They are easy to treat with double antibiotic intravenous drips. Once the initial doses were given, they sent us home and we had daily visits from home health nurses come and administer the antibiotics for the next couple of weeks. We also had to go to emerge once a day for an extra dose.

At first Stephen was scared because he didn't know the difference between a general infection and an infection of his new jaw bone. Once we were explained that jaw bone infection would be much more rare, painful and that the oral skin would show signs of redness but not so much swelling we got the hang of it. We don't worry about his jaw swelling anymore, its a part of our daily reality though.

Once you have gained your strength and your body has healed from the trama of the surgery you can prepare for the radiation by focusing on sleeping, eating, drinking 2 litres of water and doing some jaw and neck stretches.

Stephen was lucky to see the speach pathologist and physiotherapist a week or so prior to his radiation. There is evidence that starting your stretching exercises before treatement increases your overall mobility.

I hope you are doing well and focusing on what you need today. All of this info can be put aside until you meet your oncology team.

Welcome to the OCF family, Sophie

Hi Everyone,
My neck is still hurting from the radical dissection. It feels like a fist in there squeezing with a jabby ice pick. I've been trying to stretch it, massage and have oxy to take plus recently lyrica. It never stops hurting and it's been over a month. Is this normal?

I'm getting a port in tomorrow, makes me want to cry. It'll be the second time I have one of these.

Treatments chemo & rads to start on the 5th of January. I had mask fitting, pet scan, ct scan and MRI last Friday.

In the meantime, putting on weight. How much should I gain? I've gone from 127 to 142. It sucks after it took me so long to lose all that weight.

Any ideas on how I can prepare for treatment ordeal?

Hi QueenKong. I haven't had a radical neck dissection but just want to express my sympathy. Aren't there stronger painkillers you can take/ask for? When you have the port put in, can you ask for more pain relief? Or is that what the port is for? Whatever the reason for the pain, I firmly believe you should be relieved of it in this waiting and healing time before RT and chemo.

I found Oxycodone wonderful for moderate pain and great for its feel good factor but if I had severe pain I'd want something stronger. Sometimes Oxy made the pain worse but allowed me to cope with it better. Weird ... we're all wired in strange ways.

Can you talk to a dietitian about weight and nutrition? I'm not sure if you need to put on more weight but I do think you should be out of pain as much as possible and enjoying your food. You sure as hell won't enjoy it for a while when you lose your taste. Then it will be a duty not a pleasure.

Are you having counselling? Seeing a cancer nurse for emotional support? Relaxation exercises? You are going through a horrible ordeal and need to be bathed in support.

Best wishes
Maureen

Thanks Maureen for responding, I am glad at least someone is out there,
Happy New Year.
I had my port in but it's not for the pain meds, it's for the chemo drugs. I haven't a lot of veins left they can use.

The pain from the port balanced out the pain from the neck dissection but the port pain went away.

There are three days left before I start chemo and I've taken up a lot of bad habits eating wise but those will fanish when I give it all up, sadly.

I am not in counseling of any kind, nor do I have a nurse. Is is really that horrible? Should I ask for this?

QueenKong, I'm in New Zealand but I don't think we do things all that differently here. When I was diagnosed with my third oral cancer, I just knew I needed psychological help. The specialist nurse at the hospital anticipated this and referred me to the Cancer Society which has visiting nurses to call on people in their homes. She came after surgery and before and during radiation and then a couple of times afterwards. She in turn referred me to a cancer psychologist in the city, also employed by the Cancer Society. I didn't need the nurse for long and all she did was talk to me but it helped me a lot to have someone to converse with who had seen a lot of people go through a similar process.

I can't explain exactly how the counselling by the psychologist helped but it was immensely helpful. We talked about relaxation and mindfulness exercises (most of which I've stopped doing). I suppose our responses to fear and pain are connected to other issues we have in our lives so talking to a trained person helps to tease out all the fears.

Hmmm, I didn't have chemo (have had it in the past) and I didn't find the radiation all that bad. I took every drug going to deal with the nausea, constipation and pain. Losing the sense of taste is horrible but funnily enough food becomes so uninteresting that you wonder why you ever wanted it so badly before. You don't really miss it. I was scared of losing too much weight and having to be hospitalized so kept up my intake using sheer will power. Now I love to eat again!!!

Staff at the oncology unit will take good care of you through the process. My RO said it was harsh treatment but they got people through it. They are with you every step of the way:)

I had a port as well. When you go for chemo or anything that the nurse will use your port, you can ask for numbing spray. Here if you dont ask they wont offer it. Its mainly used for children to numb the skin around the port area.

As far as your intake goes, every day you need to have a minimum of 2500 calories and 48-64 oz of water. I know it sounds like alot but it is the MINIMUM! If you can take more in, say 3000 or even 3500 calories it will only help you get thru this easier. Water is especially important when having chemo to flush the poison out of your system. Try to go heavy on the water the day prior, day of and the day after chemo. Most patients will receive extra fluids thru an IV on chemo days. If you begin to struggle with taking in enough water, ask the doc for a prescription for extra hydration (usually done in the chemo lab).

Best wishes!

Queen,

Looks like we both have about one more day until further treatments. I hope yours go smoothly and would love to hear of any specifics you use to get through them. I know for me not being much of a water drinker, I am going to have to suck that up and drink as much as I can. Everyone on here is so generous and helpful. ChristineB's posts have been full of vast information. Feel free to message me on here in any form and I look forward to hearing about your treatment and full recovery.

QueenKong I saw a series of counsellors, social workers, psychologists and a psychiatrist. All for different reasons, and with mixed success. The best ones are the ones who know what you're going through. The generic psychologist or GP only has a cursory knowledge of what its actually like. As Alpaca said much of what they can do for you is being relaxed and less anxious, because when all the crazy things are happening to your body it can be unsettling, scary at times, especially when you are in a painkiller induced fog.

As for needing a nurse, no, a caregiver yes. You will have very little energy for housework, preparing meals etc. I saw the nurses every day during treatment, and the best thing was to go to them with each new symptom as things changed, and they usually had an idea which made it easier.

As for bad habits with food, the only bad habit is not eating enough. Eat it all now, sugar, fat, salt, whatever you like. Because soon enough you won't want any of it. But listen to Christine on this, she learned the lesson before most of us. Most of us can afford to lose a few pounds and when the appetite goes and the weight drops off it is natural to think "I'll just drop to my ideal weight and start eating again". Its not that easy, and your body needs that nutrition to repair, especially later in the treatment and early into the recovery, when its hardest to eat.

Don't forget the water too. Get those kidneys working and get that poison out of you.

Chemo and rads are a tough road but its very doable. When you find yourself sitting on the floor of the shower at 2am crying, take some solace that you're not the first and that happier days are ahead. Post here whenever you like, there is usually someone online somewhere in the world who has been through exactly the same thing and is happy to help you.

Thanks for all the advice and support, I read every word of it. I am wondering if they are going to go ahead with the chemo and radiation with this bad cold have now.

I called again for an appointment with someone at the counseling center and they finally gave me an appointment for near the end of January. That seems so far away & I was hoping to get started sooner.

Hi, QueenKong
Try calling the counseling center on a regular basis to see if there has been a cancelation and if you can get in earlier. The NCCN Distress Management Guildlines are posted on this site at http://oralcancerfoundation.org/treatment/guidelines.php - you will need to scroll down a bit to see this. You're supposed to be getting this kind of help with your treatment. Maybe you could pick up a couple of key words from the guidelines and use them when asking for an earlier appointment.
Also - if you are in the northern hemisphere, it is a time of low light and cold. Whenever you can get natural light, do so - a short walk, sitting by the window, etc. I am convinced that walking our old dog (sadly passed) daily helped my husband get through treatment fairly good shape emotionally and physically. His treatment was in the winter also, and started 4 years ago. He is doing very well.
Best wishes,
Maria

QueenKong, I'm glad you have an appointment for counselling, even if it is down the track a bit.

And Maria, thank you for pointing out the Distress Guidelines. I wish I had found that earlier. Although it is US based, I'm sure it applies to other countries too. It's something I can discuss with my support group in Auckland.

Good luck Queen Kong.

Regards
Maureen

QueenKong - Only two things I might add to the excellent advice you've already been given:
1) Getting appointments moved closer. It really does help to keep asking (nicely of course) and if that doesn't work maybe you could have someone call for you and cry a little on the phone about how anxious you are and that you need an earlier appointment. They can move appointments around. After my son got an important appointment moved closer, and later when he was recovering and not in urgent need of a close appointment, the hospital would always call me to see if someone else could have his appointment and I always said yes and they gave us a later appointment.
2) Something Marie mentioned struck a note with me. Low light during winter months can lead to Seasonal Affective Disorder (SAD). If one doesn't get enough Sun, it can lead to low energy, and being tired. Recently, a blood test that I had showed a low level of Vitamin D, which improved greatly - after being given large does of extra Vitamin D plus getting out in the sun every day. Just something to think about or ask the doctor.

Today was a rough start. I spoke to the radiation appointment maker after waiting all those hours, I was there from 8am for chemo and didn't leave til after 6pm. He gave me better appointments so it's going to be easier. I want to be able to get my kid off to school and then go to treatments and be back before she gets off of school. That's not going to happen on chemo days though.

Anne-Marie - I take vit D but sometimes forget it. It's really smart to try and get more sunlight. I need to get out and walk more for sure, even in the cold weather. Tomorrow, I am going to start walking more.

Maria & Alpaca - I've started reading those guidelines. That's a great resource. I like the chart they have there, it's makes it easier to understand than a wall of text.

I posted more details in the other thread. I don't think I will sleep at all tonight.

QueenKong, as the radiation treatments progress, you may find that yourself feeling really fatigued, especially if you have chemo going at the same time. It may be a good idea to line up someone who can pick up and drop off your child at school. You may not want to be driving at that point.

Chemo and rads is not easy - it's harder when you have a child. You should have some kind of help, though in some way taking care of your child as exhausting as it is, will be good mentally as it equals normalcy. With regards to counseling the hardest part about this diagnosis is fear and uncertainty. I didn't speak to a counselor, but I also decided early on that as much as the dx was part of my life - I refused to make it become my life. I did my due diligence and pushed through it, but I also came to realize that life is fleeting, a cancer DX does not necessarily = death - and while it's a battle, at least you know what you are fighting. your neighbor or some guy down the street may not have cancer but that doesn't mean he has a full lease on life, because it's random, anyone could die tomorrow. Fight it and do what you have to, but also read books, watch TV, sit with your child, and be with those around you. Don't let it steal your joy - if you do it has won half the battle already.

mental state has a LOT to do with healing.

hugs.

I am so sick and it's only the first week. I've been running a low grade fever on & off, coughing, congested sinus plus feeling like I've been run over. I thought I was going to take the train the first few weeks but I can barely get out of bed.

Awww, you poor thing! Make sure you tell your doc every little symptom you have going on. Be especially aware of your hearing and report any changes. Hopefully whatever bug you have will be gone soon and next week will be easier.

Thanks, Christine, the hearing seems okay so far. I have been telling them what is going on and they put me on IV fluids yesterday. I hope this gets better. Last time I had something like this, I ended up with double lung pneumonia and in the hospital for a long time. I need to not have that happen again.

SO should be at work and not driving me for treatments. He's having trouble managing things and I've lost my voice so I am having to text. Keeps asking me Questions..."What? What? I can't hear you.?"

IF there is trouble with transportation and missing work ask the hospital about volunteer drivers. The cancer society often has drivers available to help drop off and pick up. This may relieve some of the stress. Also maybe a close friend of sibling is willing to help. I was blessed as I was able to drive myself throughout treatment not everyone is that lucky so if you have offers of help take people up on it...
hugs and best of luck.

Wow. I am so full of admiration for the people who keep up a normal life through this sort of treatment. For myself, I was weak as a kitten and there was absolutely no way I could drive or work. Or think, or anything. But in the French health care system that is all covered for life-threatening illnesses, so it was not an issue - plus I have a very supportive partner.

But really, do all you can to make your life easier, get all the help you can - you need to be nice to yourself, that is an important part of getting better. Also, remember, the treatment is temporary and you do get better afterwards. It does not stay that bad, honest.

I am having a hard time. I was having problems breathing last week and they thought it was the virus I was fighting. Luckily, my oncologist was wise enough to send me for a CT scan and the found a pulmonary embolism so they put me on a blood thinner.

My throat is hurting quite a lot with many sores, day 13 of radiation. There is blood when I gargle and a thick bloody clot. Is this normal?

Im so sorry to read about what you have been going thru. OC treatments are brutal!

Make sure you discuss everything you are experiencing with both your doctors and nurses. Many times nurses see these things frequently and may have some ideas to help. Bleeding is not unheard of but it is something to pay attention to.

At least 5 times per day rinse your mouth with a mixture of 16oz warm water, 1 tsp baking soda and 1 tsp salt. It might burn so its ok to cut back on the salt but try to handle having as much of the 1 tsp in there as you can. Keep swishing this around in your mouth gently for about 30 seconds and then spit. This will help with mouth sores. Many here have also used Manuka honey. Try doing a search for in in the upper right corner. You will find out info about what strength works best.

If you are in pain ask the doc for prescription pain meds. The fentayl patch works wonders. Just make certain to follow all instructions exactly. It takes about 24 hours for the first patch to start working but after that it gives a steady dose of meds for 72 hours. I would always put on a new patch after about 68-70 hours so it didnt wear off completely. No patient should be in pain, it only puts more stress on them.

Hang in there!!!

Oh dear. It's bad enough having a sore mouth and throat without the lung problems too. My thoughts are with you from all the way down here in New Zealand.

I've been gargling with salt water and baking soda, will do more. I wasn't mixing the two together.

I have the honey but don' know how to use it. I've been putting it in tea. is there another way?

I did send an email to the Radiation Oncologist and he said that this is normal for this stage. When I gargle it seems to bled quite a bit more. I look in my throat with a flashlight and can see that it's quite bloody plus lots of bloody phlegm balls come up. I have pain but not taking anything for it, I have some pills but was waiting til it got bad enough.

I guess I am just worrying.

Great that your RO emailed back to reassure you. Don't let the pain get on top of you. There's nothing wrong with pain relief during this treatment so please don't let yourself suffer it.

I started with the oxy last night. It helped. The RO offered me the patch you all were talking about but I want to wait a bit. I really like to take a long shower and I read you can't with those. I do a lot of therapy in the shower, exercises and self massage.

Any suggestion for food that's not dairy? So much dairy to keep my weight up.

Still haven't been able to find out how to use the honey.

QueenKong

My mother used the Munica Honey. It helped with healing after her surgery as well as sores in her mouth from treatment.

Rub the honey all over the surgery area and rub it on your lips and inside your mouth. Its kind of sticky but it does promote fast healing from the mouth sores and softens the skin around the surgery area.

It must be pure Manuca Honey.

Good Luck
Heidi

Thanks Heidi, I tried using it in my throat. That is were it hurts so much because of the radiation. It eases the pain for a short time. Maybe it's helping heal. I hope so. I've got 20 more treatments left. Plus it's calories. How's your mom doing? I see from your signature that she is back in treatments.

Manuka - Okay - yes you can use it on open sores, and on your lips.

SO here is how to use it in your mouth (Therapeutically) Take a tablespoon of it. Place it in your mouth, let it melt and swish for around a minute and a half to two. Then swallow. ;o)

it burns like a B*tch. But it also soothes after that, and most importantly - it's healing.

When it gets too painful to take it straight up, I used to melt it in a small (baby cup) of warm water - about a mouthful so it's still strong, then do the same... rinse for 2 minutes and swallow.

Also the baking soda/salt, this mixture you can't swallow, but if you get club soda and flatten it, it does the same thing as the baking soda mixture and you can swallow it.

hugs and keep on trucking.

Thank you Cheryld. I am trucking along.

I've been doing the honey as you say and it does seem to be helping along with lots of gargling with salt and soda.

I've had some trouble with blood clots, pretty gross. Trying to move beyond the pain and eat as much as I can. Everything is not tasting good and finding it hard to cook for my family when I don't like anything that I am cooking.

I think I am going to have to get one of those blenders, I looked at ingredients in the boosts I've been drinking. so gross.

I hear you in the boost. I couldn't wait to get off of them and make my own protein shakes - pick up a waterpik if you can - the deluxe model has a tongue scraper - using this end on the lowest setting with Luke warm water will clean out the gunk in your mouth. Sorry about thw food taste - it happens to all of us. Not fun but it does get better eventually - hugs.

Yeah, if you don't already have a blender, that is something I'd highly recommend you pick up. I used mine several times a day to make milkshakes and smoothies. I also own a juicer, but if I could go back now, I'd spend the $$$$ on the Vitamix and not buy the juicer, so I would only need one appliance for both juices and milkshakes/smoothies plus whatever else you can make in those things. If you don't want pulp in your juices (closer to those made with a proper slow juicer), you can always strain it out.

The high fat, high dairy diet was bugging me too, but it's tough to get enough calories without it. I made sure that I increased my protein intake (mostly with protein powder) and drank my veggie/fruit juices to try to balance things out a bit. Try just taking a day or two off the Boost and milkshakes, and make some higher calorie smoothies with a bunch of frozen and fresh fruit, some water and/or juice, protein powder and whatever else you have that you might want to throw in there. At points I had trouble with things like chia seeds. After a day or two away from the constant dairy, I could go back to the creamy stuff and it would be tolerable or even enjoyable again.

There might be a few ideas you haven't thought of in this old thread, which might not show up on the forum list depending on your settings. Once I could eat more than liquid, I was really craving carbs, so I was eating pasta (the smaller pieces, of course), soups with small noodles in them, pancakes, cream of wheat, etc. Rice took a little longer for me because they're slippery little buggers that slid over the hump of my new tongue and made me choke. Be careful and go slow. I know it can be irritating to have to take 45 minutes or an hour to eat a meal. Sometimes by the time you finish eating, it's time to start eating again.

When I was at peak pain level during radiation I could not tolerate any fruits at all. I used to add milk to my formula (Fortisip) and some chocolate ice cream and syrup. A banana added was stingy and painful. Tinned peaches hurt. When taste went the chocolate enriched Fortisip was the only thing I could tolerate. I didn't look to see if Fortisip had corn syrup but it sure did the trick in getting me through radiation with minimal weight loss and bearable side effects. I lived on it for a few months and felt fine without any normal food. A live-wire member of my local support group survives on it alone. I hope it isn't contributing to the destruction of the rain forests but when your health is on the line it seems sensible to consume what the dietician recommends. As for the health effects of the these artificial substances .... Hmmmm. In the grand scheme of things, we have cancer, the treatment is brutal, and if we want to survive we have to allow ourselves to be zapped by radiation and poisoned by toxic chemicals.
As for my diet now, I'm not so proud of it. My blender and juicer get a workout but I need to add more vegetables to my diet.

I finished my treatments last Friday and this week has been hell. Everyone was right, that it was going to get a lot worse before it got better. It's been so hard to eat or drink anything. So much awful with phlegm balls of blood, dryness, razor blades in my throat and all over my tongue, giant sores, bubbles & blisters popping up. Sometimes, I have to grip the rail in the bathroom until the pain passes. I am over the hump though. They were giving our free meatballs at costco yesterday, and I ate half if one. It was really soft & mashed up. First thing like that in so long.

We did buy a vitamix and tried all those shakes, they hurt so much. It's like a thick ball of chalk that gags me and I cough. I've found I need thinner drinks; almond milk, lots of honey in lavender tea, Orgain and broth soup. I can get down a yogurt if it's not the thick type and I have tea with it. I take pain pills before I eat and gargle with different things the doc prescribed to help. The only other thing I can scarf down is amazingly scrambled eggs with cheese and spinach with no stems cooked in olive oil until yesterday's meatball.

I'm managing, still not below the weight I started at when they told me to gain all the weight. I hope these treatments work, I won't know anything for weeks about the tumor but I've got a lot of hope.

I love you bees for making that honey
I love you chickens for those lovely eggs
I love you cows & goats for your dairy products
I love you beekeepers & farmers for making it happen
I love all of you who have been kind and advised me here
I love all of you who have to go through any of this

Sorry to hear that you had a rough time with the treatments. Happy to hear that you were able to eat something solid, even if it's only half a meatball. Small victory, and indication of advancement to come!

It is tough sledding but you seem to be doing pretty well. Just add more liquid to make the blender drinks less thick. If you are able to eat this much solid food you are doing great! Hang in there.

QueenKong

Sounds like you had a rough ride through treatments. My mother had similar side effects. She actually had to be hospitalized several times. Now that you have finished your treatment you should began to slowly recover.

There were times when my mother couldn't swallow anything because of the swelling. When she could swallow it had to be something very thin.
I would add water to some soups because of the thickness. Even different shakes had to be made thinner.

On a brighter note you can now move forward and prayers for a clear scan.

Good luck
Heidi

I was feeling better yesterday but today I feel just horrible, so much nausea with a bad headache and I don't know why. I feel like I want to vomit. My family is trying to get me to go out but I am afraid to move because I think I will throw up. Maybe I have a virus? ugh.

Precription Zofran seem to work well for the nausea/vomiting . The side effects from treatment seem to carry on for quit a while. I hope you feel better soon.

Heidi

Anti-nausea meds?

I'm so glad you have finished treatment. I know it's hard to get through but in another couple of weeks or less you should feel much better.

I hope you have another half a meatball day soon.

Queen Kong, Congratulations!!!!! You made it through and now every day will distance you from where you have been! Just remember that, you're doing great! Radiation is "The gift that keeps on giving!" You will have a go of it for a while and everybody heals at different levels and time lines. Just keep trying, pushing yourself, and experimenting. Trust the folks here when they say it will get better. I had Cisplatin eight years ago and it's effective but man it's packs some punches to get there, nausea being its strong suit! I would inquire about the anti-nausea meds that Heidi and Alpaca mentioned. I'm sure you already are taking some but it would be worth inquiring as to dosage. Prayers for you and Best Wishes!

Thank you everyone for you words of support. I made it through that horrible day. I did have some anti nausea meds, I took more as you all recommended, I had an extra one. I didn't vomit.

I had fluids at the hospital yesterday and am feeling better. I ate a fish stick on Sunday night and had a little beef stew yesterday so I feel I have turned a corner. Went for a walk in the snow on Sunday too.

This mantra of "It's going to get better", I repeat that to myself a lot. Especially on those days I was gripping the towel bar in pain after hacking up those blood balls in the middle of the night. I can open my mouth now without ripping open a blister and bleeding, that's progress too.

I am going to go to Bjork opening tonight. Resting all day so I can make it.