Hi all,
First, my heart goes out to all of you.
My brother is 60 and he just told me that he was diagnosed stage 2 six months ago after a biopsy by an oral surgeon. He decided to take alternative medicine routes as he would allow himself to face any pain and suffering from surgery, chemo or radiation. He tried acupuncture, diet and meditation. He also told nobody but his wife. Two weeks ago, his wife called me to tell me that he had the cancer, that it it had grown significantly (from 2.5sm when diagnosed to now where he says it i son the floor of his mouth running back past his molars). He is having trouble eating and talking and is living in constant pain. He also still refuses to take any treatments. He is prepared to die but wants palliative - whihc in his mind must be non-invasive.
I have spent the past week with him (he lives across the country from me). He looks ok - he has lost a lot of weight, but he has been on a liquid diet for some time, so I dont know why. He is able to go out and do things. Starting a little exercise.
But he is in contant pain - despite percocets and MS Contin given to him by a Doctor friend of a friend. He is also remarkably depressed.
He has no insurance, and we can't get him into the system for care. Everybody wants him to start with an general practitioner who will make appropriate referrals. But without insurance (even if I cash pay), nobody wants to touch his case. So I can't even get him pain meds.
I got him in to see the head and neck folks at Dana-Farber - a 2.5 hour drive from his home. I will drive him, but he will need to keep going back as they will not even be able to runs tests during his first appointment. He thinks I am just wasting his time - "it is too big, it must have spread, i am not having surgery or chemo or radiation, so why go through this".
I respect his right to decide not to seek a cure. But from what I am told by my personal doctors, the complications and possible ways that he would eventually die of this are not necessarily treated with something as simple as pain medications.
I hate to ask this but has anyone been through something like this, where they didn't seek a cure but rather just sought palliative care? Does anyone have any advice or knowledge about how this disease might progress without treatment? Everything I read is about this involved results after major interventions.
I am so sorry if I am disturbing those of you fighting the brave fight. SO if you like, private message me.
Thank
AW
AW, welcome! You are NOT disturbing any of the wonderful members here with your post. OCF is for everyone that is in the fight weather its the caregiver or the patient.
I am so sorry to read about your brother! It must be so hard on you to watch him refuse to get proper care. There have been several members without insurance that have been successfully treated. But it is ultimately the patients choice.
Dying from oral cancer is not easy. The patient usually suffers for a long time which in many times hospice steps in to help. I wish your brother could change his mind and seek treatment. The only things that will eliminate oral cancer are proven medical procedures like surgery, radiation with or without chemo. Nothing else will do it as you see with what your brother has already attempted.
I wish I had some wisdom to help you both with this. Best wishes with everything!
Hello Aww,
I am so sorry to hear about your brother. I know how expensive and difficult it is to have cancer and no medical insurance. My mother-in-law has stage 4 oral cancer and every penny spent are paid by her children. Emotionally, physically and financially it is draining her children/inlaws. But despite the amount of dollars we have spent the cancer keeps on coming back with a vengeance.
I admire your brother for his decision. It is very noble for him to make this very painful decision. I feel that the will to fight the illness and the will to surrender are both equally noble acts.
As for us care givers we are only there to support whatever plan they decided to make.
Wishing your brother, his wife and you the best. May you find strength and courage this very painful situation.
Dear AW - I am just so sorry to hear about your brother! My son was also Stage 2 SCC, he had no job, no insurance, had recently been hospitalized for suicidal depression, recently divorced. But things really turned around for him. The hospital he was at had programs for people in dire financial straights and set up a program where we could pay very low amounts each month. He did go bankrupt but bankruptcy is survivable. There is also Social Security disability which my son did not get but I've heard of others being approved for it. There was also a drug program at the hospital he was at which forgave some of the most expensive drugs. Does your brother not have family or friends close by to lend support? How does he know "it is too big, it must have spread" unless he gets it looked at? Of course, as others have said, it is your brother's decision, but hopefully it will be an informed decision. My heart goes out to you and your brother and all those who are close to him.
Thanks so much for your support. The hope I am hanging on to is that the hospital can give him some anti-depressants that can get him enough off the floor to make some more 'rational' decisions. By rational, I dont mean what I want, but at least him making his own decisions with a clearer head.
Thanks so much.
Sounds like a good plan, AWW. Depression is temporary and there are meds to help with that.
Sorry to hear. Maybe your brother needs to speak with a counselor, therapist or other type of intervention to help. He is too young to give up. I wonder if he was always against conventional medicine, going the alterative route with foods, treatments or is just recently he is seeking a snake oil to cure him, although he used conventional treatment to get tested, and trust their diagnosis, doesn't make sense. You brother may just be fearfull. I know I was. At one of our SPOHNC support group meetings, a couple attended to hear other fighters thoughts on treatments. The gentlemen had BOT cancer, in his 60's, and was just juicing, eating a healthy diet to cure himself. They were also going to attend a tumor board meeting. I think he wound up having radiation. Good luck.
Perhaps if they can get his depression under control, he will decide to get the only Tx that will save his life.
We are off to Dana-Farber tomorrow. I will check back in when we see what they say after tests!
And the depression is on top of my list, right after pain!
Best wishes with tomorrows appointment. So glad to hear you will be going along to help.
Good luck!!!
Let us know what happens.
Good luck - today... I know it's scary hopefully they can do something for him.
And maybe he will go for treatment...
He was diagnosed stage 4. The tumor is 4.5 cm and has gone into his jaw bone. It has also attached to his tongue> The surgeon said that he had to have his jaw, floor of mouth and most of his tongue removed, followed by chemo and rad to have any chance of survival. He won't do that, but the chemo doc disagreed (they work as a team at Dana-Farber and examine together). He said the he believes that with seven weeks of radiation and cisplatin, he has a 50% chance of cure.
All of this depends on if the cancer has not metastasized. If it has spread anywhere below the collarbone or into his brain, they will not treat and only offer palliative care. I got him to go back yesterday and do bloods, PET scan and CAT scan. I am encouraging him to be brave - one foot in front of the other. I believe that given the chance, he will muster the courage to do the chemo/rad route. The surgery at this point may be too much.
I have gotten him better meds and he is being fully cared for at DF.
We go back next week for the results of the scans. God willing, it hasnt spread and he can try the chemo.
A friend was treated for a large BOT tumor with lymph node involvement at D-F a number of years ago: he is doing very well today. D-F is a wonderful institution. Best of luck to you both.
Maria
To me, its sounds like the rads and chemo will be used to try to shrink the tumor so the surgery isnt as extensive. The operation you wrote about is a very big and complicated one. Ive had my jaw removed and know what its like to go thru that surgery. Not an easy path but it can be done. If the rads and chemo doesnt get all the tumor then at that point he may need a surgery but it shouldnt be as invasive. Sounds like your friend is in very capable hands.
To me, its sounds like the rads and chemo will be used to try to shrink the tumor so the surgery isnt as extensive. The operation you wrote about is a very big and complicated one. Ive had my jaw removed and know what its like to go thru that surgery. Not an easy path but it can be done. If the rads and chemo doesnt get all the tumor then at that point he may need a surgery but it shouldnt be as invasive. Sounds like your brother is in very capable hands.
I agree... This type of cancer will likely need both treatments. The problem with dong ras and chemo first is healing then becomes more difficult. Tell him to stay strong.
I will let you know what happens when we hear if it spread.
Great news. No spread beyond mouth that shows, although the surgeon is still pretty sure she would have to remove his jaw and at least half of his tongue. He decided (and the doctors actually agreed) that the surgery would be too radical without a major increase in cure. So he is going for the Rad/Chemo route. As I mentioned, it took me a long time to get him to the point that he would even walk into a doctor. But he is facing his fears and he is going for it. Today is the pre-radiation scan and should start the radiation of his mouth and both sides of his neck (the docs say they are sure there are at least some cells in the lymph nodes even if they didnt show on the scans).
They are saying the cure odds are between 60 and 80%. Better than his desire to kill himself.
So glad things are looking up! And good for you for being such a great caregiver!
What a turn around! Thats terrific. You have made a huge difference in your brothers life. So glad you have helped him to at least give it a shot.
I sent you a private message with info how to add a signature. It really is important in helping us to help you.
Some good news! Good luck with treatments.
What type of chemo and how often will he get it?
Focus on the calories and hydration now. PLENTY of both EACH and EVERY DAY.
Good luck with your brother's treatment. He's lucky to have such a caring sister.
That's great news and Dana Farber is one of the best in the nation! He'll be in good hands.
"T"
Thanks all - his head seems in a better place. He is building his courage to fight the fight. God bless him - he is so scared. He is 60 and hasn't seen a doctor in 50 years.
I have to fly back to LA and he will see a pain doctor, nutritionist and psychiatrist while I am gone (all at Dana Farber - what an amazing place). He had his scan/fitting for his RT mask today, goes back on the 13th for films to double check mask fit. I come back to be with him when he starts the Radiation and cistplatin on the 17th.
As you can tell, I live in LA and my brother is out here in Boston at Dana Farber. I am lucky that I am a Professor so I get more freedom in the summer. I was thinking that I would fly in to get him started and then come back when the going startes getting tough.
For any of you when went through the 7 week RT/Chemo treatment, when would be the time when he would start to be really feeling the effects of the treatments?
(And I started a signature below - how did I do?)
Effects are usually felt 10-14 days after starting, and the last two weeks are the worst, up to two or three weeks post treatment for certain conditions, 3 months, and up to a year or longer for others. Good luck with everything.
Those that get the Cisplatin every week seem to fair better from it's side effects than those, like me, that got the 3 Big Bag Method. No study has proven his delivery method is less effective so that's a positive.
Each of us can react differently to the Tx and my experience on this site has shown appx 10% breeze thru as if nothing has happened to them; 10% have problems from day 1 and the rest will notice changes quickly but won't start to have problems until appx the 4th week of Tx and it will progressively get worse until 2 to 3 weeks POST Tx with those weeks post Tx by far the worse. Again he could fall anywhere in this range.
Has he been fitted for Fluoride Trays yet?
Have him record his TSH reading in his next blood draw. This number may become important if his thyroid craps out post Tx due to the amount of radiation damage.
Please encourage him to eat like there's no tomorrow, especially his most favorite foods. Most of us quickly lose our taste and that doesn't return 100% and may take up to 2 years to recover what it will recover. I didn't start to regain taste until my 4th month post Tx and really wasn't happy about my taste recovery until my 14th month. I would be prepared to discuss this with him when he starts to feel the decline in his taste.
Please encourage him NOT to use the PEG until it's absolutely necessary. Far too many end up life time dependent on the PEG as their swallowing muscles can quickly lose their memory of their function.
Also try and get him to visit this site. Believe me it can be the best thing outside of Tx. So much of this cancer and it's Tx becomes mental and much of that can be diminished by the knowledge that we collectively bring.
I, like many, would welcome the opportunity to talk to him one on one so if he's open to that PM me and give me his contact numbers. Same of course goes to you.
In addition to David's spot on advice, I want to add a couple items.
Your brother needs to begin networking and lining up helpers. He will need a caregiver, preferably a full time one. Anyone who offers to help he will want to tell them when the time comes he will let them know what they can do. He needs to write down every single person who offers their help and that persons contact info. This can be especially important if your brother lives by himself.
I would suggest calling The American Cancer Society and asking for some help there too. Your brother will eventually need someone to drive him to treatments. When taking heavy duty pain meds its not safe to be behind the wheel. The ACS has volunteer drivers who can drive him occasionally to his treatments for free. The ACS will also give up to $300 towards transportation costs to get him back and forth to treatments. If he would rather the $300 be used at the pharmacy that can be done too. The ACS will give his preferred pharmacy a voucher worth up to $300 towards his medications. It will cover co-pays but not over the counter items. The ACS needs documentation so its best to call now and get the paperwork finished before treatments begin.
There are so many important things to do when going thru treatments and recovery. One of the key things to getting thru this easier is nutrition and hydration. Every single day NO MATTER WHAT, he needs to take in at least 2500 calories and 48 oz of water. More is even better. I know it sounds like alot but his body is burning up calories at a very rapid pace and it will only increase. In my post rad days, I would take in a whopping 7000+ calories a day and I still struggled to keep weight on. Athletes take that much in during training cuz they burn it off so fast. Just get this into your brothers head its a necessity and it must be done so when the going gets tough he will keep up the calories and hydration. Ask the doc for a prescription for hydration in the chemo lab. By doing that a few times a week it will help him to avoid becoming dehydrated. This can be especially important with his kidneys with having chemo. He needs extra water to flush the chemo out of his system.
With having cisplatin, your brother needs to pay close attention to his hearing and report any changes immediately. Cisplatin is known to cause high frequency hearing loss. I was lucky to avoid this but Davidcpa wasnt. It can be something so small as a little ringing in his ears or a buzzing. His doc needs to know right away before any more of that chemo is given.
I know its too much to take in all at once. It can be overwhelming. Dont worry, we are here to help get you both thru this.
Good luck!!!
Weekly Cisplatin Vs Standard Therapy of Three Weekly Cisplatin in Concurrent Chemotherapy of Head and Neck Cancer:
http://apocpcontrol.com/paper_file/issue_abs/Volume12_No5/1185-88%20c%204.1%20Fatih%20Kose.pdfIn this study, weekly cisplatin has slightly more toxicities than the three weekly cisplatin, but weekly had better overall survival.
To add to the above posts, a baseline eye exam, kidney function, and if there is any pins and needle sensations in the hands or feet to tell the doctor, which may be a sign of neuropathy, which may not be reversable if not dealt with. They may lower the speed of infusion, lower the dose, and in some cases, eliminate a chemo.
Oral care is important. DF should have a dental oncologist on their team to check you teeth. Any in need of repair should be done before trestment. If any are in disrepair they need to be extracted at least several weeks prior to treatment for adequate healing. Brushing, and rinsing after each meal, before bed, flossing too, if it doesnt cut the gum. The stanadrad rince is warm salted water mixed with baking soda. I used that, Biotene dry mouth rinse, no alcohol & Magic Mouthwash. They say rinsing with Gulatamine powder is also good for repair of the mucosal lining in the mouth, digestive tract and stomach, for the neuropathy too, if swallowed. They sell them in health food store or vatamin shops.
The RO will give instructions for care of your neck, and mouth too. I was told to use Aquaphor on my neck daily, but not before having radiation treatment. I used Cetaphil another time, and liked that. Some RO's do hydration infusions, if needed, mine did, and did a power spray cleaning of the mouth with I believe was a saline solution, not sure.
As Christine mentioned, adequate hydration is important, and also helps eliminate the chemo from the body.
The speech and swallow therapist will give instructions, exercises to help maintain chewing, swallowing, and range of motion
The nutritionist will advise how many calories to eat to maintain weight, and adequate nutrition, hydration.
There is plenty of other things, but he will find out as he goes along, and can ask.
Paul,
Thanks for pointing out that study which I had not read but reading their study and their conclusion they state:
"In conclusion, alternate schedule with weekly cisplatin
during radiotherapy is as effective as three weekly
cisplatin with respect total Overall Survival (OS), locoregional/systemic relapse
rates. Last but not least, we were
not able to show that alternate regimen was less toxic than
standard regimen (standard = the 3 Big Bag Method). However, our study did not include
whole toxicity parameters which would be needed to reach
firm conclusion about treatment toxicity."
They explained which toxicities they were not able to study as follows:
"However, we did not use
any parameter that was accepted as �cumulative high dose�
cisplatin toxicity such as frequency of marked nausea and
vomiting, peripheral neuropathy, and hearing loss in both
groups and treatment cessation rate due to mentioned
toxicities. This was the weakness of current study."
To me those are critical toxicities which when added to the rest of the problems associated with cisplatin (the ones they did compare) really need to be compared to form a total toxicity comparison.
When I mentioned that those on this site seemed to have fared better with the weekly regimen I did so with the total toxicity in mind. JM2C's
I thought you would like the study or rather anaylsis since it does come up frequently, which to do, and does shed some light on some aspects. Easy to loose tract here with the A's and B's, and noted several things that stood out to me, that weekly infusions may be as good, maybe not so good in certain aspects.
Myelosupression more common in goup B, while grade lll-IV mucocitis was higher in froup A, grade l-ll was higher in group B.
Probability of Overall Survival. One, two year, and three year probabilty of survival were A 75% and B 65%, A 63% B 56% in two years, an A 63% and B 53% in three years, respectfully.
During follow-up period, 11 and 5 patients experienced relapse of disease in goups A 11 and and B 5.
4 patients in group A expeienced systemtic relapse and 7 in Group B
But our study suggested weekly cisplatin was as effective but not less toxic regimen than high dose Cisplatin, and then goes on to say, however............
This does seems kind of flawed with a lot of howevers lol. I don't know about any other studes or comparisons off hand. Just from this, I don't know which one I would do. Flip a coin, more likley go with what my doctor says.
Next is Carboplatun vs. Cisplatin lol. I do have one if you want.
[quote]Next is Carboplatun vs. Cisplatin lol. I do have one if you want.[/quote]Hi Paul,
Carbo vs Cisplatin efficacy trials/studies during concurrent CRT is something I still never did get a solid hit on. Kind of moot for me as my last chemo was last Tuesday and last radiation treatment is this coming Monday.
I'm still highly interested to know if anything was proven out showing weekly carbo was as effective as 3-bay Cisplatin as a radiosynthesizer.
don
Besides Induction chemo, I don't think this old battle was ever finalized. You don't see many studies with H&N cancer. Seen others like lung, nasopharyngeal cancer, and did see one for solid tumors, which involves our cancer too.
Congratulations on completing. You're the man!
Heading to Dana Farber to start Chemo and radiation in the morning. His pain is so so bad - even with constant morphine and codeine. HE can't/won't talk and can barely eat. We are actually looking forward to the feeding tube. He is so scared and I think the pain combined with the fear is creating a vicious cycle - feeding off each other. He is loaded with meditation tapes and advice. But he just walks around moaning all the time.
We are moving to Boston today - Dana Farber has a free place for people going through treatment. I will be staying in a hotel.
Anyway, thanks for your support and I will keep updating.
Sending prayers and hugs your way
Good luck with the radiation. Maybe they can increase the pain dosage or switch to another, everyone reacts differently to them. His symptoms don't sound that unusual. It's tough treatment to go through, and was like that myself my last round, and was by myself. All I can say is keep the doctors abreast, to treat what you can, since he is being hit all around by several means, and conditions, like the mucocitus by brushing the teeth after each meal, rinsing, flossing. Some like a water pic, treat bacterial, viral and fungal infections, like thrush, but can also be a combination of either, dry mouth. Adequate nutrition, hydration, sleep, which is all I wanted to do, which is not a bad thing to do, neuropathy from chemo. Some radiation facilities spray your mouth to cleanse it out, daily, and hydrate you with IV fluids.
They say, you can have the best medical care in the world, but more importantly is the support you have, during, after treatment that matters, which seems like you are doing a good job with.
Hang in there, all this shall soon pass.
He hasn't gotten/started to use the PEG yet?
So week one down. And a tough one. Not so much the chemo/radiation (yet) but rather from the fact that his pain got too intense to eat or speak - this is from the tumor. So he was literally starving to death and was dehydrated. So he was a walking zombie. We started two liters of fluid by IV every day after radiation, but that still had him dragging. On Thursday, the nausea hit - they were able to get that under control pretty quickly while he was on the IV - kit him with zofran, dexamethazone and pepcid. The kept him of the dexa for two more days, Now they have him on Zofran three times a day (until the chemo starts again when they give him the Aloxi and dexa by IV) and he is taking olanzapine every night. It seems to really work. They are pretty confident they can keep that under control.
On the pain side, they moved him to Fentynl patches and that did the trick. He was able to stop the morphine but he still uses oxycodone breakthrough.
They finally did the PEG yesterday (I got it moved up a week) and he is like a new person already. Taking food and water like crazy. He really recovered fast.
I also got him started on Celexa yesterday and am hoping that will give him a little more fight.
And this is the guy who never saw a doctor, swore he would not see a doctor and wouldnt take meds. What a trip for him. I am way proud of how far he has come.
So here we are - pain under control, nourishment and water going in. Finally where I wanted to get him when I first flew out to meet him. I am hoping he gets a week or so of respite before the side0effects of the RAD and chemo really kick in. He has been in pain from the tumor for so long, he really needs a mental break from pain for a week before it all starts up again from the sores.
Personally, I got myself a hotel nearby and am staying with him and his wife for the whole 7+ weeks. My wife and kids will join when they can. I am going to see this through with him!
What a great brother you are!!! Not every sibling would stick by the other ones side thru everything. Im sure he greatly appreciates you being there for him.
Now the key to this whole thing is keeping at least 2500 calories and 48 oz of water in him every single day. If you can get more in him that would be even better. Even 3500 calories isnt too much when his body is burning the calories up at such a fast pace. Keep getting the IV hydrations too, ask the doc to write a prescription to get it a few times per week thru all the treatments and for the first few weeks afterwards. It really does make a big difference in helping him to feel a little better.
Try to keep managing the pain. Your brother must communicate when he hurts so it can be adjusted to the correct dosages. It sounds like you have everything under control. Between getting that in order, getting hydrated and finally being able to take in enough calories he probably feels like a new man.
Keep up the good work!!!
That's so awesome. Hopefully he will get the relief - and you are a terrific brother.
I also just want to say how impressed I am by you. What a fantastic Brother you are. I know that your Brother and his Wife will need you and they will never forget how great you have been to them through this most difficult time in their lives. I want to thank you for being there.
Tammy