This is a repost (sorry y'all) with a new header so that Patricia and Phil
see it......I've got one oar out of the water tonight, and sent it away
prematurely.
Sally
-----Original Message-----
From: Charlie T <charliet@flash.net>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Date: Saturday, May 23, 1998 12:37 AM
Subject: Re: [MOL] tongue cancer/radiation
>Dear Patricia,
>
>You and your husband have found another husband and wife team going through
>a very similar situation. I am Sally, wife of cancerer Charlie. You may
>get this in installments, as this week is really hectic. Charlie is very
>weak and needs constant attention. But know you are not alone. And I will
>be happy to help you in any way I can. I am sure I will learn from you,
>too.
>
>
>
>
>>My DH has metastatic tongue cancer and did 7 weeks of radiation.
>
>
>How long ago was this? You have to remember that these oral tissues,
>because they are exposed to air, really burn and blister much worse than a
>breast or a torso. BTW< Charlie had 7 weeks of radiation (I'll call it
>XRT) with a chemo boost in the last 2 weeks concurrent w/ the XRT. They
>call it a boost, and it was a clinical trial at MD Anderson.
>>He is feeling
>>confused about the healing process from that point. What is
>>normal?
>
>It was stressed to us that every patient is different. MDA feels that if
>you lose more than 5% of your body weight going in to treatment, that
>healing time is VERY dramatically increased. Charlie unfortunately did.
It
>is probably more common with oral patients as they consume food/calories by
>mouth, and I don't know about your husband, but Charlie lost his taste buds
>really quickly, and the food intake decreased no matter what I tried to do
>to prevent it. As soon as he is strong enough to focus and benefit, our
>wonderful Dr. Khuri wants to start him on speech therapy to learn to
swallow
>and speak. Even the tiniest mount of water he tries to swallow aspirates
>through the nose. Is this the case with Phil? If not what is preventing
>him from swallowing? Has anyone mentioned speech therapy?
>
> When can he
>>reasonably expect to eat again (he's been on a feeding tube for 2
>>months)?
>
>Charlie has been on a tube since Feb 19th. When it was first proposed, we
>were told it might be a month maybe two. obviously it will be a lot longer
>than any of us hoped or projected. And when he resumes eating, it will be
>very gradual...soft, non-ascidic or irritating foods. You can supplement
>with the PEG tube while resuming eating by mouth.
>
>He would like
>>to hear from others who have been through this experience. His
>>cancer was in the throat
>>part of his tongue (not an oral cancer). It spread to the lymph
>>nodes on both sides.
>
>Charlie also had lymph involvement. The primary was in the tonsil. They
>are both gone (tonsil and lymph), but unfortunately 10 days ago we found
out
>he has a new tumor in the base of the skull that suggest it is in the
blood.
>What a let down when we were actually thinking he was "Cancer free" for 2
>months. So we begin chemo again, and he is on narcotics (which he hates)
>for throat pain. So the PEG tube is here to stay for a while longer. We
>use Ensure Plus and crush up and dissolve all meds that are not available
>in liquid. The bags we use are Ross Enteral feeding bags w/ tubing and we
>hang it from an IV pole at home. What do you use?
>
>
>If you could stand to read it we have a chronicle that we posted weekly to
>MOL from the diagnosis through the whole 1st clinical trial. I have not
>taken up a regular posting since this newest development not only took me
by
>suprise, but keeps me busy. But it will give you and your Phil a
>perspective from 2 in a similar boat. But I would ask your permission
>before forwarding since it is at least 10 installments.
>
>If there is any way I can be of service to you, please let me know. Also,
>where do you live, where did he have treatments, etc....I really believe in
>sharing information. Be patient, though. we are on a very close watch of
>Charlie's white cell count, and I may disappear for a day or two until
>everything is stabilized. Hope that does not happen though.
>
>Also you will be hearing from John, who has head and neck experience, too.
>He offered us much comfort, insight, and information.
>
>
>Your friend,
>
>Sally
>>INput appreciated!
>>
>>Patricia and Phil Vanier
>>
>>
>>------------------------------------------------------------------------
>>This is an automatically-generated notice. If you'd like to be removed
>>from the mailing list, please visit the Medicine-On-Line Discussion Forum
>>at <http://www.meds.com/con_faq.html>, or send an email message to:
>>majordomo@lists.meds.com
>>with the subject line blank and the body of the message containing the
>line:
>>unsubscribe mol-cancer your-email-address
>>where the phrase your-email-address is replaced with your actual email
>>address.
>>------------------------------------------------------------------------
>>
>
>------------------------------------------------------------------------
>This is an automatically-generated notice. If you'd like to be removed
>from the mailing list, please visit the Medicine-On-Line Discussion Forum
>at <http://www.meds.com/con_faq.html>, or send an email message to:
>majordomo@lists.meds.com
>with the subject line blank and the body of the message containing the
line:
>unsubscribe mol-cancer your-email-address
>where the phrase your-email-address is replaced with your actual email
>address.
>------------------------------------------------------------------------
>
------------------------------------------------------------------------
This is an automatically-generated notice. If you'd like to be removed
from the mailing list, please visit the Medicine-On-Line Discussion Forum
at <http://www.meds.com/con_faq.html>, or send an email message to:
majordomo@lists.meds.com
with the subject line blank and the body of the message containing the line:
unsubscribe mol-cancer your-email-address
where the phrase your-email-address is replaced with your actual email
address.
------------------------------------------------------------------------
