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.
------------------------------------------------------------------------
