My husband has SCC of the head and neck - just diagnosed recently - starting treatments tomorrow - radiation and chemotherapy. They have not found a primary tumor site despite 2 surgeries, a CT scan, PET scan, and MRI. He has a large lump on the left side of his neck (above clavicle). I am scared that the radiation of all areas as opposed to targeting a primary site will be devastating and eliminate any quality of life. Has anyone else gone through radiation treatments of the head and neck with unknown primary and can you tell me what he can expect, and more importantly, if he should know all of the details of what may happen? The doctors only say he will have dry mouth and mouth sores and possibly a problem with his jaw bone, but won't say anything else. I am very confused and want to think that he should just have the area that has cancer (the lymph nodes in his neck) radiated and leave the rest alone. If the primary isn't showing up, then why treat everything? I am told that it is very unusual to not find the primary site. Is there anyone who has experienced this who can give me some opinions? Thank you very much.

While I had a known primary, as someone who was treated with what were essentially only three angles of radiation (front, left, and right) and who had a field of radiation that went from my TMJ to my clavicle, I feel ok to comment on this approach. Will the treatments (as with most field radiation) be brutal? Yes, but highly doable with the expected mouth sores, (mucocitis) and exterior skin burns, and subsequent permanent dry mouth. Many, many posters here, especially those of us that went through treatment before the days of IMRT, made it through and dealt with the issues. He will endure and prevail the treatment issues as well. Long term, now years removed from the event, I am pleased with the quality of my life, and I believe had they not hit my stage 4 cancer with the biggest hammer around, I would not be here today. Does radiation itself cause long-term issues? You bet. But none of them are horrible, and what is the option? Being on the wrong side of the grass.

It is not unusual to have an occult primary, but it is not as common as having a finite site that is definable. What you are suggesting (that they radiate the nodes only) is a mistake in judgment. The nodes are NEVER the primary or only location of the disease. They are the first sites of metastasis of that disease. Your doctors sound like they are approaching this with the right attitude and technique.

For anyone who goes through radiation and chemo treatments there is a significant drop in their quality of life during the treatment process. This is not a walk in the park, this is cancer. But patients rebound in time. That is what you have to stay focused on.

Thank you very much for your response. I feel a little calmer but am so scared for my husband. I know he does not realize the full scope of what he is about to go through. I want to remain optimistic though and will try to do so, but really wish there was a known tumor site. Thanks again.

When my husband was being treated up at Hopkins, there were two other folks who were being treated at same time who had unknown primaries. The treatment plans were more-or-less the same for them as for Barry -- and included bilateral neck radiation as well as radiation to oropharynx, using tomoTherapy or conventional IMRT (latter for an ongoing trial with Tarceva, a new drug), plus concurrent chemo with carbo- or cisplatin (Tarceva trial).

We ran into one of these folks last month when up for Barry's check-up and she had just had her 3-month PET/CT and all looked good. She was eating soft foods and was about to stop using her PEG. She said that at the beginning she had been terrified of the treatment and her future but now saw that there was, in truth, life ahead of her and she was very happy she had elected to go through with the "full court press." (She too had had several surgeries at another facility which had failed to find the primary tumor, thus the referral to Hopkins).

So you guys have to not only focus on your "job" for the next two months -- and believe me, it is your JOB and a tough one at that -- but on the better times to come afterwards.

Best of luck, be strong,
Gail

I has promised myself, and others, to stay out of this one. Like Brian said, the nodes are never the primary site. If it were me, I would go with he more conventional radiation protocols and appropriate radiation enhancing chemo. As you have done, reach out for people on here that also had unknown primary tumors, they(the members) do exist. Hit it everywhere they normally treat Tonsil/base of tongue/nodule cancer with. They may, while under sedation, want to conduct a more invasive biopsy of the tongue/tonsil areas. You needed, and seem to have gotten, a complete chest and abdomen work-up to rule out the rare lung to neck metastases and maybe a quick brian MRI. They are really on track. They should always should treat all the suspect areas, and don't worry, he could come through fine. There will be side effects, but they can and have been very manageable. If you read some of theses posts, you are left with only a few people that have made it thought the treatments, not true. Many of them believe they have and have not, chosen not to say. Good luck, with what seems to be the appropriate treatment plan.

Glenn

Hi Michele,
I had an unknown primary in 1997 with a metatsis to one lymph node in the neck. I had modified neck dissection followed by 36 XRT treatments. No chemo. They did not feel at that time that the chemo would improve my chances, which were excellent, more than about 5% and the side effects were too great. BUT that was 1997 chemo.

I was given Salagen to help preserve the saliva glands. See that he gets something. My treatments basically fried eveything from the top of my ears to my armpits, for lack of medical terms. Two weeks into treatment, they had fried my tongue so badly I could not longer eat so wound up on Ensure Plus. At that point they made a stent to
protect my tongue. I would also ask for some Biafine creme to protect his skin from rad treatments. This should be started now.

Anyway, I'm still quite alive 9 years later, despite a new occurence almost 5 years ago with known primary on the larynx. So don't let an unknown primary scare you. Hopefully whatever rouge cell started this has 'now left town', but if not, he needs the full radiation treatment to make certain it hasn't got any firends.

It's a rough road, but doable. I was back to work 3 weeks post treatment and able to eat some foods in small quantiies. Everyone's body acts differently. Were here to help you any way we can. Keep posting.

Take care,
Eileen

Michele,

While I had a known primary, I had conventional radiation in a field very similar to what Brian described (IMRT wasn't even around then). I also had heard plenty of warnings about quality of life after this kind of treatment, and certainly the months during radiation and well beyond were painful and difficult, with mouth sores, infections, and swallowing problems. However, once my mouth healed, the taste buds returned, and I got quite a bit of salivary function back, the quality of life has been great -- and in some respects it's even better than before cancer.

The key thing for your husband at this point is to have a head and neck cancer team that is experienced and thorough -- this is a disease that you want to hit hard at the first opportunity.

Cathy

I totally agree with Glenn on this one. If I were in this patients shoes, knowing what I know about this cancer, I would not even consider IMRT radiation, I would want the conventional. I had conventional and, yes, there are side effects. I was 41 when I had the radiation (over 2 1/2 years ago) and I have adjusted to the changes, my life is GREAT and I would not change my treatments if offered the chance. While I feel IMRT is great and I'm so happy for the patients that are able to have it, IT IS NOT THE TREATMENT OF CHOICE FOR SOME PATIENTS. I struggle to understand how it can be used on a patient with an unknown primary???? We need to make sure that in our exuberance to tout our treatment as the "best" that we don't lose sight of what is best for the patient asking for our help. Everyone should push and hope for IMRT if possible, but it's not always possible.

Thank you all for your replies. They have comforted me a little (I wish I could say a lot, but I am totally overwhelmed right now), and I appreciate it. Today was the first treatment - chemo (Cisplatin)and radiation. We did not even know the extent of today's treatment. Thought the chemo was going to be an injection and medications for nausea and were surprised to learn when we showed up this morning that he would be there all day. Which was not a problem, but we were a little upset at the lack of information on what to expect. I am very overcome emotionally at this point even though I am usually a calm person, but find I am breaking down at the drop of a pin (try not to around my husband, if I can help it, but I am not always successful). As I read everyone's posts, I wonder if we should be more informed than we are, as I could not tell you for certain what his stage is, although I believe it is IV, the radiation oncologist said head and neck cancers are not really classified as other cancers. I feel stupid, but to be honest, I do not even know if it is conventional radiation or IMRT that he is getting, but plan to ask that question tomorrow.
My husband's ENT surgeon during his first surgery for biopsy, opened his neck from the outside when he didn't see anything from the inside, that was January 9. He had another surgery January 16 to remove left tonsil and do other biopsies, to no avail. The thing is, after the January 9 surgery, he left a drain tube in his neck, which he removed a couple days later, but did not totally close the "hole" as he said it was best for the matter to keep draining out. We have asked a couple of times about closing it, but he said no, that it would eventually close. It gets clogged up, though, and when it does, becomes even more painful for my husband. Now seems that something is sticking out from the hole, but it keeps draining, only because we have begun putting "draw out salve" on it (we did this on our own). Has anyone had this experience? It doesn't seem right to me. Also, the lump on his neck has gotten progressively bigger, but was explained away as fluids, necrotic matter, or infection within the site. We wonder if it is the cancer spreading, but no one seems to acknowledge that. One more thought that may seem stupid to ask but with an open area on his neck, would that cause the cancer to spread? Thanks so much for your input. I realize we have a lot to learn and it is helpful to hear from those who have had this experience.
Michele

Michele,

This might be a silly question but have they biopsied the lump?
It seems strange that they haven't paid any attention to that......

Yes, the first surgery accomplished that and showed SCC in that area. Prior to the surgery he had a fine needle biopsy as well.
Michele

Michelle,
Where is he being treated? Is it a CCC or at least a CC. If not, you may want to seek a seek a second opinion at one. You have sevral in your area.

Did they remove the lump when they did the surgery or just biospy a piece of it? Did he have a neck dissection and that is why the drain hole?
Yes, I think they should be telling you more about what to expect in the treatment. Not knowing what to expect only raises the anxiety level.

Take care,
Eileen

Hi Eileen - No they did not remove the lump during the first surgery - just biopsied. They said during the first surgery they would first look down through his mouth and do some frozen sections right then, but if nothing showed up on the frozen section, then he would continue the surgery and open up neck from outside to do further biopsy. Second surgery a week later was to remove left tonsil as he indicated primary often hides in tonsil and to take further biopsies (panendoscopy?). So he did not have neck dissection although ENT surgeon says that will be necessary after the radiation and chemo treatments are done, however, the radiation oncologist seems to think the radiation will take care of everything to the degree that surgery will not be necessary.
I am not really sure what CCC is - I assume Comprehensive Cancer Center? Anyway, the hospital in our town has a separate oncology center which is where he is being treated. To start over somewhere else at this point would not be possible. We would have liked to get a second opinion, but it happened so fast and my husband started feeling pretty poorly from the growing lump and the pain from the surgeries, as was not inclined to have to travel hours for another opinion and go through the whole process again.
So, today was second day of treatment and ended up to be another full day - he went in for 4 hours of fluids this morning to flush out his kidneys. In the meantime, we decided to try the amiphostine and he had the first dose today prior to radiation. Made him very ill and I think he is inclined to discontinue it already. His doctors indicate the response is not that good and the side effects are not easily tolerated so they did not encourage or even suggest it, but after I read about it and asked them, they said we could try it. I guess you don't know if it is going to work or not until the treatments are well underway. In the meantime, if it causes such nausea, my husband says it is not worth it. I had the doctor explain to him what the effects of damage to his salivary glands would cause, but he is in such misery right now, I am not sure he can make a clear headed decision, especially based on the fact that it "might help."
Thanks for "listening.
Michele

Hi Michele, my SCC was occult (unknown) until it was found in my tonsil during surgery. Your husband has a good chance of beating this. Remember to pace yourself as this is a battle measured in weeks and months. He may do better than some with regard to side effects. In any case try to control worry.

PS ccc is indeed comprehensive cancer center.

Hi Michele. I am also a caregiver to my husband who was diagnosed with SCC, primary right tonsil with 1 lymph node involvement in October. You sound so much like how I was in the beginning of all this. My husband had a modified right neck dissectomy in October and had developed a seroma after surgery, which is a pocketing of fluid underneath the skin. He had to have this pocket of fluid aspirated twice a week for the next month until it eventually went away. Maybe this is the reason the opening that was left? Also Leon is having IMRT (39 treatments). He has 11 treatments left. The first 25 treatments large areas were radiated on all areas of his neck and oral cavity, now he is in what they call the coning down stage where specific areas are targeted. He will have that for his remaining treatments. Hang in there. It is tough. It's scary and your life's routine that we had grown very comfortable with is disrupted. I cried off and on all the time too. I finally had to get a little help and have been taking Lexapro since the end of December and it has made a vast improvement in me. Just keep asking questions. No questions are dumb!

Hi Michelle! First, please ignore my medical spelling!! Second, I have been thru and still going thru all you are describing. I know we don't know each other, but we have this thing in common. From what I have been told, my husbands situation is extremely rare. He has been called a medical marvall, acedemically challenging, etc. Estimates are anywhere from only .4%-2% of head & neck cancer remains as primary unknown. I have been all over the internet, and your husband is the only other one I have found. My husband was diagnosed in July 2005 with stage IV SCC metastic to the right cervical lymph nodes, primary still remains unknown. He had 3 lymph nodes surgically removed. The largest was 6cm, the other two were 2cm. They removed all the cancer they could, but the largest tumor was wrapped around his carardid artery so they could not take it all. He went thru 3 exploritory surgeries, xrays, cat scans, pet scans, etc. They never could find the primary. They told us his only hope was a very aggressive treatment. He went thru weekly chemo treatments and daily radiation treatements from July to Nov. He was given carboplatin and taxol for chemo. He had 30 minutes of radiation daily. The radiation treatment went completely around his head and upper body, from his sinuses down to his upper chest. Prior to treatment, they pulled ALL of his teeth because this amount of radiation to his lower face would destroy his teeth and weaken his jaw bones for the rest of his life. He was on a feeding tube from July to the end of December. Due to complications from treatment, he spent 8 days in the hospital. I'm not going to kid you. It was very rough at times. We had constant problems with infection from his feeding tube and it had to be replaced toward the end of treatment. During treatment, he didn't have the energy to get out of bed. It was exhausting for him to go to treatment everyday. He has lost over 50lbs. He did fairly well with the chemo, but the radiation was awful. He had a lot of pain in the neck and throat area. The radiation totaly destroyed his saliva glands. His pain was constant and intense. There were sores in the mouth, mucosis, dry, bleeding tounge, etc. It was all he had to take small sips of water to wet his mouth. My husband finished treatment Nov21, 2005. We still don't know if treatment worked, but the doctors seem optimistic. He goes next week for his first new pet scan after completing treatment. He is no longer on a feeding tube but still has to eat soft foods because his throat had not completely healed. But his skin has healed nicely on the outside. The only real side affect is his dry mouth due to not having any saliva glands. He has to drink a lot of water to eat and to talk. Other wise, he has returned to work and is doing just fine all things considered. Even though he wanted to quit several times during treatment, he stuck it out. Now that it's over, he's glad he did. I can't say that I have any advise for you. Everyone and every situation is different. If your husbands treatment is an intense and aggressive as my husbands, it will be a hard road but it is definitely doable, and in my opionion, well worth it considering the alternative. If you are going to be his primary caregiver, I will also tell you it isn't easy either. Its hard to keep a "happy face" and remain positive when all you want to do is cry. While your husbnad is awake, you will be there to care for him. While he is asleep, you will need to keep your household & motherly duties (if you have children). For me, this was overwhelming and exhausting. There was very little time for sleep. I had to learn to take things one day at a time. Control what I could, and what I couldn't, let it go. At times, I felt like I just couldn't do anymore. But, you know what? We did make it...my husband and I made it thru together one day at a time. And I know you can to! My husband didn't like "talking" about it. Every once in a while, he would break down and we would talk, but for the most part, he kept his thoughts to himself. As for myself, I found not talking only made it worse. I need to get my thoughts, feelings, and fears out in the open. I am very blessed to have a wonderful support team of friends around me. Your making a right first step by finding a good support network of people to share with. If you are interested, I have an 800# to my house. Email me and I will give it to you. You could call me anytime, day or night, if you need to talk. I may not have any answers or advise, because we are still going thru it ourselves. But I definitely have a heart full of love and understanding to share and big ears to listen with! Best of luck to you.

Vickie: Hi. Thank you so much for finding me and replying. If it is possible, I "feel better" after reading your post and knowing that your husband and you made it through this treatment that we have just begun, not to mention the surgeries and complications your husband (and you) has suffered through. You must both be very strong. I hope that I can be as well, but even more, wish that I could take some of the pain for him, even for a little while, so he could rest.
My husband completed his first week of treatments yesterday--chemo (Cisplatin) Monday and radiation Monday through Friday. It has not gone well. We thought we should try the amifostine (Ethyol) to try to preserve some saliva glands, although both physicians said that they had not seen anyone have any success with it as they could not tolerate it, but my husband could try if he wanted. They didn't have any on Monday, the first day of his treatments, but ordered it and he took it by IV on Tuesday and it made him so very sick. I am the one who suggested it and now I feel so bad. My husband was able to eat Monday night after having had chemo (Cisplatin)and I was encouraged by that, but after receiving the amifostine on Tuesday, hasn't eaten since! He has gotten upset with me for trying to encourage him to eat. Now, even though we knew he would eventually have to get it, he is having the feeding tube first thing this Monday. I try not to expect things, but really didn't think it would be this bad this soon, and I realize that he hasn't even begun to get to the worse part yet - God help us to get through this, as impossible as it seems - but thank you so much for letting me know it is possible to make it through the treatments, especially knowing that your husband has a very similar diagnosis as my husband. Jesse has not had any lymph nodes removed, as they said it would not be possible without shrinking the mass first, as it is over 8 cm. I worry all the time that the doctors are doing the right thing, as I detect that they (the radiation oncologist and the medical oncologist, and the ENT surgeon) are not "on the same page" sometime. But what can we do, we have started treatments, and are at their mercy. I haven't read a whole lot of posts, as I am new to this, but a lot of posters talk about "teams" and although I know Jesse's doctors are sharing information through charts and so forth, I don't believe they are meeting and discussing his case. And with the rarity of an unknown primary, it seems as if there should be more of a concerted effort. I do ask a lot of questions, but I don't want to irritate the doctors by acting like I know more than them, when I am quoting things that I have read on the internet, etc.
I don't even like to close my eyes anymore, because when I open them, for just the briefest second, I feel like I am in my prior life.

I can only make each day a goal however, and I guess sometimes I will have to make each minute a goal.
Thank you and everyone for your words of encouragement.
Michele

Michele --

Too bad about the amifostine but it should be noted that Medimmune strongly recommneds it to be given by subcutaneous injection now, not IV -- there were too many serious side-effects from IV administraton (per our daughter who worked at Medimmune). It also should be given after the patient hydrating with at least 20-24 oz. of water and taking an anti-nausea drug 90 minutes before the injections, preferably one of the serotonin-uptake drugs like Zofran.

Many people cannot tolerate amifostine, even one dose, even given sub-cu, but many can take it for a while, and apparently being taken even part-way through the radiation regime can help salivary function. But it is not the main factor -- our RO (considered an expert both on salivary gland preservation and amifostine) told us that getting IMRT and having a parotid-sparring radiation plan is most important, that there is about a 10-15% improvement in salivary preservation with amifostine but that IMRT can allow him to spare 50% function. However, he emphasized that the critical issue here is this has to be balanced with the need to hit the cancer with the maximum radiation dose -- by far the most important thing! Sometimes the placement of the cancer does not allow a plan which spares the salivary glands, which may also be the case with an unknown primary. You could ask the RO about this.

So not taking Ethyol is not a crisis -- it is more important that your husband get through the radiation and chemo without becoming sick, and having to have breaks in treatment. It was worth trying the drug -- once -- but now it is time to move on. Whether the Ethyol is the only reason for his not eating -- many people on this list have had similar reactions to cisplatin alone, it is a pretty heavy-hitting drug. Be sure he has adequate anti-nausea meds and also, get some advice about what to eat and what not to eat. Is there a nutritionist on staff? We met with ours weekly and it was very helpful.

Be strong, it is a long road but it can be done...

Gail

Hi Michele,
My radiation doctor explained to me that Amifostine only works about half the time so I turned it down. He told me it would make me very sick and no guarantees it would work. I had conventional radiation, both sides, bottom of ears to armpits and I still have some salivary function. They spared the large salivary gland on my non affected side so that helped. Conventional radition does not always mean NO salivary function left.
You hit home with me about waking up and for a split second feeling like you were in your prior life. My biggest struggle wasn't my fear of the cancer, struggles of treatment, all the things you would think would be the most difficult. Mine was the horrible homesick feeling I lived with and my yearning for my "old" life. I would wake up in the morning and the homesickness would wash over me and stay there, affecting everything I did. The process of saying goodbye to my old life and the old me was painful and long but it was done and now, my new life is full and wonderful and has advantages to it that my old life didn't have. Always a silver lining, so hang onto that thought while you go through these dark days. You'll make it!
Minnie

Thank you everyone - it is a comfort being able to draw on others' experiences versus only being able to go on what the doctors and nurses say, though I don't discount their opinion, that is not what I am saying. I am sure you all understand what I am saying more than I do probably. They (doctors) were right about the amifostine, however, but I would not have wanted to always wonder if he should have tried it - at least he gave it a shot. Speaking of which, the RO said (after the fact) that if he wanted to try it a second time, better results have been obtained with injection in the skin vs. IV. So my first thought was "now you tell us!" even though it was the medical oncologist who ordered it- should she not have known that?
I pray that he gets through the feeding tube placement tomorrow - yet another hurdle. There seems to be so many...it seems like oral cancer affects so many things..everything is compounded. In saying that, I certainly don't mean to minimize the effects of any other cancer disease sites, not at all, but there certainly are multiple challenges with head and neck cancer. It is something one could never imagine until you or your loved ones face it.

Thank you Gail for the suggestion about meeting with the nutritionist - I believe there is one available and I think we may do that. And you are so right Minnie - homesick is a good description of the feeling. I am afraid my husband has not had that hit him to the fullest degree as yet and I fear that it will really bring him down at some point. I hope not. My husband has always been the pessimist and I have tried to be the optimist.

With God's help I will try not to get discouraged and to hold on to the hope, which has become a little easier by reading the posts and words of encouragement on this site. I was very surprised and pleased today when my husband said that when (he said "if and when" but I corrected him)we get through this, we are going to become volunteers! It made me happy to hear him say that and I can see now that there may be a silver lining in all of this.
Thank you all.
Michele

Michelle...don't beat yourself up about asking Jesse to try the Ethyol. All we can do is ask questions and make the best decision we can with what info we're given. When your told that this drug has the possibly of lessening the side affects of the treatment and can help maintain a better quality of life long term, of course you want to try it. I did the same thing with Jimmy. It was given to him both ways...IV and sub-cu. His side affects were the same, either way it was administered. It gave him so such excruciating bone pain, fever, and violent chills that I would lay on top of him and hold him as tightly as I could just to try to stop the shaking. This would go on solid for 12+ hours. He was already on the feeding tube when they started giving him the Ethyol but he couldn't tolerate being fed. Jimmy took it daily for about a week inspite of the side affects. But at the end of that week he said stop because he couldn't stand it any more. The doctors gently pushed him to keep taking it but he wouldn't. When he stopped taking it, all those side affects ended almost immediately and didn't return. In the group of people we met while going thru treatment, we only met one person out of about 6 that could take it. Is Jesse still taking it?

How is he doing with PEG tube? That was another hard "pill" for Jimmy to swallow. He tried to eat mush as long as he could and wouldn't feed thru the tube. But, he kept losing too much weight. The doctors had to get a littel stern with him about using the PEG. I'm not really sure why using this was such an issue for him. I think having to use it was like "giving in" to him and made him feel like he was losing more and more control over his life. But in my mind, the PEG tube was the best thing ever as far as nutrition goes. At least with it, I new he was getting the calories, vitamins, etc. he needed. We did have a lot of trouble with infections due to the tube. They finally had to replace it because the one he had was "defected." I don't know if this is normal or not. We don't know anyone else that had a tube.

As far as the comment you made about this not being the worse part yet...things will worsen but they will do so slowly. And as things do worsen, there will be people around you that will help you cope with each step. At least for us, the progression was slow (except for the Ethyol). And then after treatment, things will slowing get better. Jimmy finished treatment Nov21. He still isn't back 100%, but he makes improvments each week. And when treatment is over, Jesse will too!

Hang in there girlfriend! Thinking of you

Hi Everyone! I got back home about 2 hours ago, having spent since Monday at the hospital. We went Monday morning to get PEG tube. Jesse was severely nauseated/vomiting upon arriving; so they gave him fluids for awhile and went ahead and put the tube in, but by next morning, CT scan showed it had "backed itself out." So we got another surgeon to put another tube in using a different technique and so far it has stayed in. But Jesse couldn't have anything in it for 24 hours to make sure it sealed, and by then, we had decided to have a port put in while he was still in the hospital, so he was only able to get the feeding started for about 8 hours before he had to fast again to prepare for the procedure this morning. So already 5 days in the hospital, but at least we have the PEG and a port in place and hopefully we can move forward from there. I will now pray that there are no problems with infection and am fighting the feeling that if it can go wrong, it will. At least he didn't miss any radiation treatments during this process, so he has 10 treatments completed at this point. I felt so bad for him, knowing how entirely sick and miserable he felt and having to go for treatments anyway. He tried to skip them a couple times, but didn't. I hope the coming week is a little calmer. He is already down 27 lbs since discovering the lump! RO says he needs to put 10 lbs. back on as soon as possible. I can see a big challenge there.
Within 2 hours of arriving home from the hospital, his temperature rose to 102.7. But we got it down to 99 now. Is that (fever) a common occurrence? I really didn't think he was going to be as sick as he was during the first week and then to spend the second week in the hospital. I am glad he only took the Ethyol one day as it seems to have only complicated matters. Does radiation make you nauseated as well? I thought it mainly made you tired.
Also, what does Erbitux do? I had asked the medical oncologist about it, and she seemed to indicate it would not need to be considered until later on in the treatments. Does this seem right?
I am feeling frustrated with having so many doctors, surgeons, etc. and one not seeming to have a clear understanding of what the other is doing... every procedure seems like its own separate entity and not part of the overall treatment process for the cancer. If that even makes sense. I should go now and post later after I have rested.
Goodbye for now and as always, thanks for being there and listening.
Michele

Michele, Here is something I have done since we first started battling this disease a year ago. I have a notebook beside me all the time. I write down every question that pops in my head under the Doc's name I want to answer the question. I take this note book to every appointment we have and ask the questions and write down their answers. They have gotten used to me during this past year and come in asking to see my list of questions. These questions are organized and pertain to a specific event in John's treatment or pain or problem he is having. And they may be about something I have read here. And I always get an answer[which I sometimes argue with] Remember, the people treating Jesse have not been through this personally, so you can push for answers, demand help and attention when you need it and generally be a pain in the neck if you have to be. I think you should express to these Docs that you are feeling fragmented and not well informed about Jesse's treatment- maybe ask for a meeting with everyone involved. It's really gonna be tough for awhile and I hope you can stay strong. Just remember your goal is to get him well. Amy

Amy - You are right - I have thought about keeping a notebook and this is something I have to quit procrastinating about and do. Being a procrastinator does not work well with being a caregiver. That, along with having a bad memory. Subsequently, my lifestyle has changed, and I have to change my personality as well, which is not a bad thing - I have been fighting the procrastination thing for a long time, I just seem to work better when I am under pressure. So now I am under pressure. So I guess I have no problem after all! (I think I better get some rest, like I said)

Actually, I am not intimidated about asking question, and have been - so much I guess that the RO told me I should get a book (a mystery book) to read. He did add that he doesn't mind and wants me to ask questions but I think he was insinuating that I was driving myself crazy by searching the net and coming up with new fears. But it would help if I had a more organized system so that maybe I wouldn't re-confuse myself with each conversation we have with one or the other doctors. The thing is, they answer my questions, but I don't have the background to necessarily understand the scope of it. Or maybe I think I understand at the time, but then later I don't. Thanks for the input and the suggestions. It's probably good to keep an ongoing log, even if it is not just to document conversations.
Good night. Sorry for rambling on....
Michele

Michele, this may bring the wrath of the universe down on my head, but I would suggest to you that you limit you "net" searches to OCF and one or two other very reliable sources. We cannot master the practice of medicine-much less the speciality of Head and Neck Cancer in a few months- we can only narrow down to the few most reliable resources out there, and that is a mind boggling experience in itself. Let me save you some time and grief. Brian and many other members of this group are as knowledegable about this disease as anyone you will find. Get you "fears about future "what ifs" under control[i.e. on the back burner], and start concentrating on the next few months, because that is what you are going to be dealing with. Insist that you understand the tx. as it is proposed and the daily requirements of you and Jesse. Understand and deal with step 1 and start asking about step 2, so that you can be prepared for that. I just posted a question in "Currently in treatment" about John's chemo which will start in 4 to 6 weeks. I want to have some time to get ready. Things usually happen so fast [as you know], we usually don't have time to get prepared. Beside my "questions for the Docs" notebook, I have kept a journal for John since his diagnosis and treament started in March 05. It is a comfort and encouragement to him to read how much he has battled and overcome in the past year and it has been a real help to me in fighting with his insurance co. when I had to, and quite frankly, it has given me a diary of my own life over the past year. I also take a calendar to every Doc. appt. This calendar has all our important family birthdays, school events, family reunions, etc. on it, and if I need to negotiate an appointment,I will! We still have a family and A LIFE! You can't procrastinate any longer, Michele, you got to get it together and get it going If you want to talk, e-mail me[ altho I much rather talk to you on the phone-I'm older than e-mail]. Amy

I do need to get going - a log is something I know will be very helpful. Just seems that it is one more thing that I have to keep up with. I also realize I have to quit searching the net and basically, since I have found this website, I have done that as I realize that what I read and learn here is much more help to me than the technical jargon elsewhere. As long as I realize, which I do, that everyone reacts differently to these treatments. There is still much in common, and it is especially helpful to read tips about what others have learned to ease pain and discomfort. I am very grateful to all of you and it is a comfort to know I can share thoughts and ask questions here. At some point, I may be able to offer someone something back. I need to curtail my "net" time, however, and get my log started before I start forgetting what the progression has been to this point. Thanks everyone for your help.
Michele

Michele, at to the "keeping up with" issue, I keep everything in a 13"tall x 16"wide carry bag that has a hard bottom and will sit on the floor by itself. [it's classy looking-navy and beige and has my name on it- it was a gift from my daughter, who ordered it from Lillian Vernon catalog or some such] everything is in it, the calendar, John's journal, question notebook, and it sits by my chair and is ready to go when I go. I also have a 2" ring binder set up with tabs to keep track of important ph #'s[Docs,nurses, Ins co, Provider network #'s] EOB's from the ins co.and issues with the same, meds John is on, and anything else that might be pertinent to his treatment. This might be overkill to someone else, but since my stroke, I have to be organized.
Plus, organization brings with it the same great feeling that Spring Cleaning does Amy

Michele, I just want to commend you for doing everything you are doing so far. When I was fighting this, I did all the research/ question-asking and log-keeping myself because my husband seemed to be overwhelmed simply by having to take me to doctor's appointments, pick up prescriptions, adn take care of other household stuff without me. Honestly, he just really didn't want to let the reality of what I was facing in and I didn't have the energy to fight that right then--I was too busy taking care of myself as best I could.

But the organization thing is key. I have a large notebook with dividers and pockets that I started keeping. I ahd a section for all the chemo info., a section for the rad. info. a setion for the surgery info., one for the second opinion we got, one for all the info. I got about dealing with all the miserable side effects such as mucositits, a section for info. about people and organizations that could help with transportation/shopping, etc. In addition, I kept a journal of my own throughts/feelings/reactions during the whole process. In addition to that I kept a log for every day of how much I ate/drank/when I took my meds, how much sleep I was getting, if I was running a fever, if I vomited, and any other symptoms that might be of concern.

I had special pages for questions to ask at the next appointment with each doc: RO, MO, ENT.

Then I ended up also having a small file of research articles I found and read which answered some questions I had.

People wonder why I didn't get more reacreational reading done during treatment and recovery! Just taking care of myself was more than a full time job. John and Jesse are lucky they have caregivers doing this for them.

Nelie

Michelle,

My husband just finished radiation and chemo on January 16, 2005. He too has an unknown primary with a tumor in his left lumph node <6mm, stage IIIB. His first pet scan showed a hot spot on his left tonsil - but the biopsy came out clean. They think the primary could have regressed when it spread to the lymph node. I have been trying to find more info on this also. What I have read, in layman's terms, they can predict where the primary should be by the location of the tumor in the lumph node - because of the way the drainage occurs, etc. My husband just finished radiation of the entire throat and chemo. It was really rough toward the end of treatment. He opted not to get a feeding tube which I believe now was a big mistake. He ended up in the hospital right after treatment ended. We are now on a liquid nutrition through IVs during the evenings. He is just starting to show improvement daily 1 month after treatments. We had another pet scan last week and will find out the results on Feb 27. Praying the treatments worked. The doctors will decide after the results of the pet scan whether or not to perform the neck dissection. There are new studies looking at monitoring rather than neck dissection. The radiation doesn't start out bad but last few weeks are very rough. Just keep counting down with him after the half way mark.

Hang in there!

Hi, I couldn't tell if you got your Erbitux question answered or not, so here is some info for you to look at. Hope it helps. Hang in there!
http://www.drugs.com/erbitux.html

Andrea