After discovering a lump on his neck, my husband had an ultrasound, CT and tongue biopsy. He was diagnosed with base of tongue cancer, stage 4a. Cancer is also in the lymph nodes in his neck. Pet scan is clear. He's in good health otherwise and doesn't have any pain or discomfort. We've seen the radiologist and oncologist. Treatment options are an aggressive chemo alone with 3 chemicals to shrink the tumor followed by radiation/chemo. The other option is chemo and radiation together. Does anyone have any experience with this?

Hi Jenkensmom - Welcome to the best place to be for all the latest information and and compassionate help from people who've been where you are. My son had SCC (squamous cell cancer) under his tongue, had surgery followed by radiation only and doing terrific almost 6 years later. We didn't find OCF until he had already started radiation so it's good you found this forum early in your husband's treatment. I'm sure others will be along whose experience more closely resembles that of your husband and can relate to his experience.

This is exactly what my husband had. We did the chemo first. Cistplatin, Taxotere and 5FU, then we did Erbitux with the radiation. Hit it hard the first time around, it might save having to deal with it again. It's hard, but he sounds like he's healthy like Kevin was so he should be ok. He WILL lose weight though, so make him start eating anything and everything now.
Please private message me as you go through this if you want. Being the caregiver is VERY hard and it will be good to have someone who has just done it. Although, this site is filled with amazing caregivers and patients and we ALL know, so here is ok too. Just please reach out. I didn't find the site until our last week of radiation and by then I was a wreck not having anyone to talk to that had been through it.
Please keep in touch with us. We are here for you.
Blessings,
Kathy

First off I would get another opinion from a Comprehensive Cancer Center (CCC) and see what they recommend. Chances are high (70%) that his cancer cells would test positive for HPV like mine and tons of others with that same presentation. I would request the test. Most with his presentation are recommended to get concurrent chemo, usually Cisplatin and rad. The Cisplatin is usually administered in 3 doses (I call that the Big 3 Bag Method which I had) but some MO's are switching to a weekly smaller bag method which seems to lessen the adverse side effects from the Big Bag method according to posters on this site that have had the 6 weekly doses. You are wise educating yourself and you are fortunate to have found this site pre Tx as it will be of tremendous help from now on.

Received the final pathology today from Monday's biopsy. Confirmation of SCC/HPV + BOT stage 4. The team is recommending chemo using Taxotere, 5-FU and Cisplatin administered by pump for 4 days then off for 2 1/2 weeks. He'll have have 4 treatments of this routine in hopes of shrinking the tumors in the nodes. This will be followed by 7 weeks of radiation\chemo. Radiation will be 5 days per week for 7 weeks.

The other option is to do Cistplatin only with radiation for 7 weeks.

Any experiences with either? The 1st option seemed to work with Kathy's husband (see above reply)

Most of us here have had cisplatin. There are also some who have had the combo you mentioned. I would suggest getting a second opinion if you have any reservations about your husbands treatment plan. There are several top cancer centers which may be able to help you sort out which solution would work best.

Everyone is different and will respond in their own way to medications and treatments. What works for one may not be the best for option another patient.

Since his cells tested + for HPV I would opt for the least agressive Tx (of the 2 mentioned) so I would lean towards the concurrent Cisplatin/rad and would also ask about weekly Cis vs the 3 Big Bag Method. I was also Dx'ed a Stage IV BOT HPV+ SCC but 6 years ago and had the 3 Big Bag method plus rad and believe me I feared the Tx would kill me waaaay more than the cancer. Since studies have proven that HPV+SCC responds better to the conventional Tx (Concurrent Cisplatin and radiation)vs HPV negative SCC I personally think the current Tx protocal is an overkill and puts HPV+ OC patients thru more than need be. That's why I would opt for the lesser of those 2 options given you. Chemo is poison, plane and simple. JM2C's

Hi, Diane - what is the size of the primary BOT tumor - will either be a size in CM or tumor T stage.
Maria

Hi Diane

Your options are almost identical to the ones Alex faced in 2010. The Head and Neck guidelines list both treatments as options for stage 4a oropharyngeal cancer. HOWEVER the induction chemo is controversial as even the experts cannnot agree.

For us, we threw the kitchen sink at it and took the induction chemo because we wanted to minimise our chances of recurrence. Downside is more severe, lingering side effects and longer time to recover.

First round of chemo had an immediate effect for Alex and by round 2 the oncologist could not longer see or feel the tumour. This complete response may well have occurred with chemo/radiation alone, but we will never know. I DO know that on the strength of Alex's response the doctor started ordering HPV tests for his other oropharyngeal patients - believing that Alex's response had something to do with that.

Would we do it that way again? Hard to say. I think Alex might say no, and I would say yes. Alex certainly suffered from some very severe and long term effects including 12 months on a PEG, ongoing issues with thick stringy mucous and long term battles with mucositis. He struggled to eat with bloating and/or nausea affecting his ability to get all the calories he needed for about 2 years and still has is days. We just don't know if this was the effect of the chemo, the radiation or even the effect of leaving a hole created by destroying a 4 cm lump of malignant tissue that obviously did damage of its own whilst it was sitting there.

I often wonder if we went too hard but then remember that if we had gone the other way and the cancer had come back, our distress around a recurrence would have been far greater if we hadn't tried everything... Of course if we had gone the other way and the cancer hadn't come back we would have been in a better place than we are now.

I hasten to caution that Alex had a particularly rough time and others seem to recover faster than Alex has, so you should read everybody's stories to get a balance. I believe that part of the problem for Alex was that he was already underweight at diagnosis and had been procrastinating about seeing the specialist for a couple of months putting him behind the eight ball before we started. In addition, he suffered a lung collapse on day 4 of chemo which complicated his treatment and recovery time. In addition to battling the cancer and the chemo, his body was also battered by major surgery to repair his lung.

The reality is that only you, your husband and your doctors can make the choices with your husband getting the deciding vote. To that end, make sure as David says that your doctor is a good one with lots of experience with this type of cancer from a CCC.

What they are recommending is exactly what we did. It was hard, but not awful. Kevin hated the 5FU because he was sick and knew the stuff was still pumping into him. The other you got and left. The 5FU you bring home and wear on your belt loop. It was awkward. He had to resist the temptation to pull it out!!
I hear what David is saying about it being overkill, but, I don't know. Maybe overkill was what he wanted? Kevin I mean. We trusted our Dr and it's what he recommended so we did it. Just FYI though, cistplatin has damaged Kevin and David's hearing. One of the side effects.
Kathy

I don�t understand why your doctors are talking about options in the first place. Are you sure you�re at a top flight facility?

The option you take is the one that assures the highest possible cure rate for the situation. This is only something a doctor would know. As a patient, your husband has much less knowledge then those administering to him. They should know the best treatment plan. How are you to decide?

If they are telling you that they think it�s a 50/50 proposition than I would go with the weekly Cistplatin/Rad combo. I did weekly and had almost no problems with the chemo.

If they are telling you that one treatment regime is better than another but more brutal, you go brutal. You want this cancer killed now, this time. I have had a recurrence and I would not recommend any easy way out the first go around with this killer. I would take the most aggressive rout and kill it now. I know David feels that HPV+ makes a difference but I do not. Whatever the cause, I would ask for the most aggressive cure coming out of the gate.

Thank you all for the information. It's really given me a lot to think about. I'm not sure if I was misleading in using the word "options." The doctors explained the 3 types of treatments, one being surgery. They are recommending starting with chemo first because the tumors in the lymph are so large. They want to get them reduced as much as possible. My understanding is if they are smaller it is less likely for other areas in the mouth/neck/ears etc to be damaged in the process. We are going to a top notch cancer facility in our area. The radiologist, oncologist and ENT discuss their findings with each other and agree on a treatment plan. I guess what it boils down to is to hit it hard and agressive from the get go, or slow and steady? I'd like another opinion but my husband is happy with the plan. That's why I've turned to you all who have lived through it.

Sounds like you are fairly well under control. Just one piece of advice:

The most important thing is that once you have made your decision, stick with it, believe in it and don't look back.

Those of us that have made it out of the hole tend to defend and advocate for whatever treatment we had - it helps us validate the decisions we made and makes us feel more comfortable. This is just human behaviour. The same applies in reverse when things don't quite work out the way we envisaged.

Diane

Klo is so right that our personal experiences color our responses to questions like yours. That's why DavidCPA's and Kelly211's advice are different. Having had not one, but two recurrences, if I had it to do over again, I'd take the brutal induction chemo and then radiation/chemo. While the after effects can be bad, the first time the cancer came back, I ended up even worse. I'd take a look at the recent OCF news report that just a DNA test or PCR test showing HPV may not tell the whole story since the mortality numbers for those are the same as for non HPV (hence Kelly's doubt). The beneficial difference seems to also involve E6/E7 antibodies
OCF news
My HPV+16 status hasn't helped me much.
here is where your doctors can help - ask them what they would do for their son or daughter or father or mother.

Charm

No matter what, we are here for you.
Klo, you are so right. I never thought about it that way when we all battle, I mean discuss, our differences on tx. It does validate us. Great point!!
Kathy

There are many, many factors to be considered - HPV, smoking or not, not, the health of the patient, the size of the tumor, lymph node involvement (bundled or not), EFGR level, exact subsite (tonsil vs. BOT), to name a few. You should be able to find study results on both protocols - evaluate them based on HPV/non smoker analysis. In this case, one of the factors you mention is:

[quote]They are recommending starting with chemo first because the tumors in the lymph are so large. They want to get them reduced as much as possible. My understanding is if they are smaller it is less likely for other areas in the mouth/neck/ears etc to be damaged in the process.
[/quote]

Although the chemo is rough, radiation is the gift that keeps on giving - reducing the target volume with the induction sounds pretty compelling to me.

In discussing this with the doctor, you might ask if his recommendation for himself would be different than for his brother - if they each had the exact same cancer as your husband. If the answers are different, you will know that the doctor thinks the protocol he picks for himself has a good enough risk/reward level and less side effects, but that the one he picks for his brother has a lower risk of failure (I'm basing this on a couple of studies I've seem - can try to find them other the weekend). If he answers the same for him and his brother, pick that one.

To add to the complexity, it's looking like a slightly accelerated radiation therapy may be of benefit. Not all centers can accomodate this, but it wouldn't hurt to ask.

Maria

Just a personal note here,

Although I disagree with David on this point, I do so with the highest level of respect for him and his contributions here at OCF. David is one of our hero's here and I read every one of his posts. I learn something new almost every time.

Thanks David.

I'm just like anyone else on this site so please don't feel like you have to explain why you disagree with my thoughts. I'm more of a risk taker than most and my posts probably reflect that from time to time but I do explain that I'm not in any way a doctor, just a survivor so hopefully readers take what I say with that "grain of salt". I do always advise that they seek alternative opinions from a CCC if possible and certainly anyone would be foolish to ignore what a team from a CCC advises. IMO everyone with ANY cancer should have access to a CCC before any Tx is done.

I know sometimes it seems like hunting an ant with an Uzi, but where cancer is concerned I've seen too many people die from taking the conservative approach, you may only get one shot at it - give it your best and come in with both barrels firing. I know traditionally HPV cancers are easier to treat with less recurrences - but we're all individuals on a cellular level - everything comes into play - DNA, environment, diet, habits and lifestyle. Just because 8 times out of ten the same treatment works - doesn't mean you won't be one of the 2 that has a problem and recurrence. As charm! I think has, said before - you have either a 100 % chance of beating it or a 0% chance - that being the case, do whatever you can to make it the 100% so that you never find yourself saying.... What if? Good luck

Port was put in yesterday morning with no problem and very little pain. So far so good!

Was this a chemo port?

The port they put in your chest to make for easier access during tx. Did you not get a port? They are the bomb according to my husband!! They draw blood from them and everything still a year later. Not sure when he will have his removed. Not for awhile longer.
How long did you survivor peeps keep your ports?
Kathy

We did not even discus a port. I will be interesting to see what everybody says.

Hello Hockey Dad:

I didn't have a port (to use when getting chemo), but wished I had because every time I had my chemo with blood work (1/day week for 7 weeks), they would have to find a vein in my arm(s) that would work, and eventually most of the veins either "rolled," or ran for their lives, so I often had to be stuck numerous times until they found one. So, maybe mention it if they didn't offer because looking back, it would have saved a lot of pain/time when getting treatments.

Julieann

I held onto my port for about a year after I finished my treatments. Its not a big deal to keep it. Alot easier to have it than to have to get another surgery to put it back in.

Yes, a chemo port. Chemo starts Monday.

This sounded like the best way. He'll go in on Monday to have the chemo pump hooked up to the port. My understanding is the chemo drugs will flow until Friday when the pump gets removed. Then he'll go back in about 3 weeks and repeat the process.

The pump should only be the 5FU. The others will be administered first most likely. Along with anti nausea stuff and benadryl and other stuff. Did they say Monday would be a long day? Will be thinking of you.
PMing you a thought I just had.
Kathy

My husband was very reluctant to have a PEG, he thought he could tough it out. When he met with the doctor to discuss it he mistakenly said Port instead of Peg not even knowing there was such a thing. The doctor was very quick to say we can give you one of those too. After we walked out of there I just had to laugh, here he was determined to not get a Peg and volunteers for a Port along with it. It was a good thing he did, lost 40 pounds and would of never made it since he could not eat a bite for weeks since food became just nauseating since it tasted foul or spoiled. (Didn't have much problems with nausea though, (upset stomach and throwing up) and he hardly took his nausea meds.

I also did not have a port but like Julieann wished I had. IMO anyone getting our radiation should be required to get a port put in.

I had a port and it worked out to my advantage. A port wouldnt be necessary for only getting radiation. A port would be for a patient getting chemo along with radiation. At least thats what I think David meant.

Yes, Monday is supposed to be about 3 hours. Do they usually do the anti nausea and Benadryl the first time. What's the Benadryl for. Isn't that an allergy med?

I was told the Benadryl was for any alergic reactions I might have. I had none but loved the Benadryl. When they started that it was time for my wife or other caregiver to head off and get something to eat as I was going to sleep for at least an hour.

Hi Jenkesmom

If you are going with the cisplatin, taxotere, and 5FU, expect to be there a lot longer than 3 hours. Alex and I went through this identical induction. In Australia, there is quite a rigamarole around the cisplatin which I assume also happens in the US. Besides all the anti-nausea and anti-inflammatory meds that go through, there is also a lot of fluid and Alex had to pee a decent amount (less than a litre but right up there) before they let him out.

They also decided that the first round, Alex should stay overnight in case there was a reaction.

My recollection is that the cisplatin alone was around 4 hours by the time they had done blood tests, hydration, pre-meds and then wait for Alex to pee. Taxotere was about an hour and 5FU was a doddle - hook it up check the flow and off you go home. We had to go back at day 2 for a refill as the casette that held the 5FU was old and small. This may not be required for you.

The order for the day was sign in at 8am and get blood taken. Present to cancer day centre (12A) get an apple juice out of the fridge for Alex (to help with the peeing later). Chat to the nurses about health, weight diet etc until bloods came back (about an hour). Get hooked up to pre-meds, and taxotere for about an hour, do hydration via IV in addition(1 litre) to 6 tetra packs of apple juice orally then cisplatin, then pee. By this time it was around 2-3pm. Hook up to 5FU out of there at 3.30 and try and beat the traffic.

Alex was very very scared before his first chemo and could not even read the pamphlets they tried to give him. The next morning he was literally bouncing off the walls. When asked how he was feeling his reply was that he was feeling like a "box of birds". I remember it well because I had never heard him use that expression before.

I think a combination of relief, hydration and the knowledge that we were doing something to fight the cancer contributed to his well being. This lasted for a couple of days before his lung collapsed (separate to the cancer but possibly loosely related to the chemo). The expected effects from the chemo started at the end of week 1. Thick stringy mucous, nausea and bone deadening fatigue. Lasted a week and then started feeling better for a week. And then start all over again.

Thank you Karen. That's exactly what he's going to be on. It sounds like a much longer process than what he is expecting. He doesn't seems to think I need to be there for this one though. I'd like to go just because he doesn't tend to get the information I want to know about. However, I also need to save my time off of work for when he really needs my care later on.

As far as the side effects, I know each person is effected differently but his doctor seems to think it's not that awful. I have to ask myself, "not that awful in relation to WHAT?" I went through all of this with my friend who had stage 4 breast cancer and it is pretty much as you describe. Ok for a few days after treatment, then very fatigued and nauseous. Each treatment after got worse because she wasn't back to normal before the next treatment started and she ended up with a new side effect each time.

Simon had induction chemo followed by Radiation with Erbitux. He would tell you that the induction chemo had it's moments but was very manageable. It was the radiation (maybe in conjunction with the Erbitux) that knocked him about.
He didn't have a port, and probably should have. I don't remember anyone suggesting it. He had a PEG, didn't want to get it, but his treatment team gave him no choice. It was put in before radiation started and he says he couldn't have gotten through without it.

Hi Jenkensmom

I would recommend that you go with him the first time and tell him it's for you not him. He might be trying to protect you and this is actually not very productive.

Alex also tried to block me until he understood that it was as much for my peace of mind as his. Once he realised he wasn't being a burden, and he also didn't have to put on a brave face (got to the point where he couldn't anyway), he was ok with it (that and the fact that he finally realised that I wasn't going to back down AND I was holding the car keys ). Afterwards, he was truly appreciative (I think).

Alex was unable to take a single thing he was told on board that first day. I took over the logistics including talking to the ancillary staff and he concentrated on himself and getting better. I went to all the chemoradiation days - just to make the day go by faster for Alex and to keep in touch with the cancer co-ordinator, dietician, and other ancilliaries. I only went to the first induction chemo and for the others, just settled him in and left. It turns out that Alex was hospitallised for most of his induction phase so it was often a case of visiting him on chemo day until the first bag went up and then leaving him to it. I also worked full time during the whole thing although I took an awful lot of time off between one crisis and another (only indirectly chemo/cancer related).

The interesting thing that I find is that at the time you wonder if you are strong enough to get through it and is it all worth it and afterwards you feel like it wasn't so bad. Quite a strange phenomenon - bit like having a baby, going through all that agony and then forgetting the pain because the outcome outweighs everything.

Great info Karen brought up! Definitely go with Paul the first time! It will help you both remember later what was said by the doctors or what exactly went on that you can discuss later. You can take notes, get names of people involved with his care or help your husband remember some of the good points or important things to remember. My son (Paul) did not have chemo but I went to all his Radiation Tx and appointments with the doctors. Being busy and involved with your husband's care will help you to have less time for your own anxious moments and more time for the closeness and good moments you can have with each other.

Christine,

Re my post, I'm not sure that even those that "only" get radiation wouldn't benefit from a port because I'm not sure that the chemo is the sole culprit in producing side effects that lead to the conditions that would benefit from having a port. Weight loss, dehydration, malnutrition and nausea are all side effects of radiation and having a port to administer IV's would certainly help.

I'm going to go with Christine on no port for "only radiation" since David's example speak more to reasons for getting a feeding tube. Of course, if you don't get a feeding tube, then a port may be helpful.
This will be my third round of radiation and I have never needed an IV any of those times for anything connected to radiation, only the chemo.
The chemo does require IV to get and that's where a port could be handy. Weight loss is addressed by a feeding tube except for those who need parental infusion thru the veins - very rare so no need for a port there. Dehydration is easy enough with water in the feeding tube or even a nasal tube. Same goes for malnutrition. Nausea may be helped by an IV
Heck even this time around, I'm passing on a port despite getting chemo. My veins have fully recovered. Ports are not problem free and I don't see the potential benefit outweighing the very real routine risks (pain, bruising, or swelling plus infection and bleeding)/ Plus with my luck I would get one of the more serious but very rare Potential complications of a port internal bleeding, nerve damage,collapsed lung, fluid build up around the lungs, blood clot formation, and accidental cutting or puncturing of blood vessels.) Heck I already am in the 5% minority for whom Erbitux does not work and the complication rate is about 10% for ports.

David you are right about the nasty side effects making a port useful to those who have radiation by itself. I was told the port I got was to save my veins. Chemo has a reputation for ruining even the best veins. Thats why I got the port as I previously had very good veins that were easy to stick. Now, even 5 years later my veins arent the same as they were before all the treatments so the port was very helpful.

Remember they are those of us, right or wrong, that simply refuse to get that PEG. I was one and man without that PEG, that port would have REALLY come in handy for my stubborn butt.

I'm so glad I discovered this site! We're only at the beginning stage of this and already the information is so useful! Karen, you were right! Instead of 3 hours, it was about 6. They did the anti-nausea, steroid, a lot of fluid, the two drugs and sent him home with the pump/FU-5. So far so good.

Chiming in here.... I am to start both chemo and radiation on the 8th (perhaps later if I do the Erbitux/Cisplatin trial). On the 1st, I go in for my port. I was told I will be grateful for it down the road since it makes giving of drugs and fluids that much easier, and will keep my veins from being damaged.
After gaining some knowledge from this forum, I asked about a PEG. All 3 primary docs said that unless my weight drops by 10%+, they don't want to go that route. Reasoning is that muscles used to swallow etc will basically atrophy; also they feel that the more I am involved in getting/maintaining my sustenance, the better all around. Makes sense to me, but if the time comes where I need a PEG, I will swallow my pride -if nothing else - (bad pun) and not argue.

I thought that would be your day Diane. How is Paul feeling tonight?

Lyn,

Before you swallow your pride and opt for the PEG, discuss the nasal tube with your docs. Accomplishes the same goal without any surgery. I had one and IMO it's the only sensible option.

My husband's ENT mentioned the NG tube as a possibitly, but noted that they had experience issues with displayed metastasis from the primary tumor further down the pipe. They have some method of avoiding this (don't remember what, sorry), but won't hurt to ask about it, if the tube would go by the tumor.
Maria

Maria,

You are the first person that has mentioned this displayed mets theory. So is this ENT suggesting that the nasal tube rubbing against the primary could break off some cells which could attach themselves to other squamious cells and start a new tumor?

Yes. If I remember correctly, the solution was to position a sleeve by the tumor so that the tube could pass through safely without getting stuck. This could be an issue with a very large tumor that the tube could come in contact with.

lynney0814- Paul's port was used for the first time yesterday. They drew blood and ran his chemo. He said all he felt was a little prick, less then when they draw from the vein. In addition he didn't have to worry about them finding a vein or the vein rolling. Worked out well.

Also, I wish you the best of success in your upcoming treatment.

He was fine last night. No problems. I thought he looked pale though. Haven't seen him yet today as we were both at work. I didn't talk to him and he didn't mention anything. I don't want to keep pestering him about how he feels, so I'm trying to limit it to evening questions about his day.

I had 7 weekly treatments with Cisplatin, and 7 weeks, five days per week of radiation. No surgery. I'm 16 months out now and am doing pretty well. Some do worse. Some do better. I had a PEG tube for 4 months. I was lucky there. But be prepared for many months of total misery. As the doctors kept telling me: "you'll be miserable but you'll get throught it." I was and I did. I eat most things now but still have oral issues (swallowing, dryness, tasting, tongue issues) but overall get along ok and lead a largely normal life.

I had TPF induction chemo ..Taxotere, Cisplstin and 5-FU in 2009, which hospitalized me for 6 months, paralyzed from the waist down for 10 months, lost 100 lbs, blinded in one eye, and almost died. I stil have severe side effects three years later..severe neuropathy..lucky to walk one block, need epogen shots and tranfusions, and many more with hundreds of dr visits. It's very effective, controversial, and has good response rates with HPV, but I would not have done it, being what I experienced, and know now that it's very toxic, and can delay your treatments for the real curative, and that is radiaton. It delayed my completing treatments by a year, and most drs believe it's a cause of my recurrences. Everyone is different, and responds differently, but this wasn't for me. I went from from working full time, being physically active at 48, and after only 5 days induction chemo was disabled.

PaulB - I'm so sorry you had to go through all that! Do you mind if I ask questions about your experience? If you do, I certainly understand. If it's not too difficult for you, can you tell me how your symptoms first started that caused you to be hospitalized/paralyzed?

Day 2 of chemo - minor fatigue. So far so good!

Drink plenty of water (minimum 48 oz) to flush the chemo out of your system. Chemo can be very hard on the kidneys. Drinking extra water will help to avoid kidney issues down the road.

No problem..I was physical fit, but not the gym rat I was once, but was doing lighg exercise in the hospital during treatment. For induction chemo, you are hospitalized for 5 days. On the 5th day, I was discharged, and even walked out, refusing a wheel chair. When I got home, I just started feeling bad, diarreah, and could hardly walk. I had to call an ambulance to go to the local hospital ER. Was there for two days, and once when getting up I fell to the ground. I think it happened again, told to stay in bed, and noticed my legs started to have limited movement and then none. Next thing I know, I 'm going to ICU, and was in and out of consciousness for the next month and a half. I had every ailment..sepsis, septic shock, disseminated candisis, lung collapse, renal failure, high blood pressure, low pressure, and more, and all my fingernails, toenails came off..ouch, burns on my face, mouth, inside mouth, and on hands. They were going to put me in the burn unit, but opted to treat me in the room..peel some skin off. I was in the hospital from Nov 22nd to May 7th in isolation, unable to walk, eat. When I got out to go home, I was supposed to go to the nursing home, but did not. After that, and to this day, just have had several hundred dr visits, tests. I have 6-7 doctors, and go to one at least one a week, someones 4. I wore no glasses before Chemo, totally blind in one eye now from Chrmo causing optic ishemic neuropathy, which led to neovascular glaucoma, and trying to save my other eye.

I was looking at the cause of the paralysis, doctors have no answer, and hate to blame the beloved chemo, just saying I was too weak, but I found that galium barre virus causes paralysis, usually started in the feet and up. The virus usually starts due to stomach bacterial infection, which I had. Thete is no real test for this except a spinal tap.

The doctors have no answers, expect my local Onvologist, who didn't treat me, said I was given too much chemo at the other institution.

The 3rd round of chemo is done with very few side effects. Slight fatigue and nausea. Paul also has a sore mouth but not enough that he wants to take anything for it. Food doesn't taste the same. All in all, chemo has gone much better so far than we anticipated.

Today was the simulation for radiation. Radiation is scheduled for December 3 and chemo treatment will be reduced to Cisplatin only. Praying our good luck continues!

Chemo isn't normally too bad... especially in comparison radiation. Rads has the tendency to lay you flat... your hubby sounds like he's doing well. Best of luck with the radiation.