Hi my name is Sherri im 42 yrs of age female have no children & have just had colon rectal surgery 3 weeks ago with a full hystercectomy & am on perminant colostomy (stomar) with no reversable possability im told im in rapid stage #4 metastatic cancer three of my ten mesenteric ? lymph nodes that are positive i have a Onocologist appointment on Wednesday 14th Dec 2005 to go on Chemotheripy ? what should i ask him or her ?, .my other questions is what am i in for is it all worth it?, what happens ,can someone give me some insight to my situation , will iloose all my hair if i go on chemo will it grow back again as i have long black hair ,how long will it take etce, will i need a caregiver, will i be too sick as i have no back up support through this period & im all alone in this situation.my parents are very much older & cannot help& I have no insurance, any infomation would help. Thank you. Sherri
Hi Sherri, most important-Take a Deep Breath--Don't Give Up-yes, it is worth going through chemo. My husband is stage 4 with mets to the liver. He has two-one in each lobe-and is on his second round of chemo which is comptosar, xeloda and avastin. His first round was 5-FU and oxaplatin. He didn't loose his hair with the first round. They say he may with this that he is on now. The first chemo wasn't too bad. He didn't feel real well, but well enough he still worked every day except treatment days (he is a dozer operator and had to wear a pump for 48 hours and they were afraid he would get dirt in it). But believe me sweetie, even if you do lose your hair (which you may not), it will grow back and some say it is even thicker. There are some beautiful wigs made now that you can't even tell it is a wig. The most important thing is to fight this. They have come a long way with new treatments and it is very definately worth a try. I will include you in my prayers and let us know how you are doing. Another good site to go to is webmd. You will find that even tho we can't see or talk to each other there are people in this big world who do care and will try to help by being there to encourage you or let you vent or whatever.
When my husband was first diagnosed last year, I felt like nobody knew what we were going through. Then I found this website and the webmd website and it has made all the difference in the world to me in being able to handle all of this.
Good luck and my prayers have already started.
Greatful
Thank you for your time writing to me & shareing & im sorry to hear of your husbands situation , what is a pump? thank you for your prayers & writen support.
Hi Sherri, they put the chemo in a small pump that you carry around in a fanny pack. It gives continous chemo for a certain period of time. My husband has a mediport and they just hooked it up to that. The pump is about the size of a long billfold. (Or, the one they used on him was. I am sure they have different sizes.) It wasn't uncomfortable to him at all. Good luck today and remember FIGHT! This doesn't have to be the death sentence it used to be.
greatful
Sherri
By now you will have had your meeting with the oncologist. No
doubt she suggested FOLFOX?
Yesterday I sent the following message to Phil:
I am no great expert but I have some experience. As both
patient and carer.
This time, six years ago, I had a Hartmann for a metastatic
(into 4 lymph nodes) colon cancer which resulted in a
colostomy and then 6 months of full FOLFOX chemotherapy.
Etc.
Back in 1988 I gave up work to care for my son who had a
glioma grade 4 (brain cancer). It had started in 1982 and he
was given no more than 2 weeks to live. He finally died, after
years of slow disintegration, in 1992.
No two people are the same or experience what look like
similar problems in similar ways. But I think it always helps to
communciate. Do you think your wife would like to be in touch
with someone who has had a similar experience who can talk
closely to her?
How about you? Would you like to have a fellow carer to talk
to?
Where I live (NSW) the State Cancer Council has a Helpline (13
11 20) that can put either or both of you in touch with
someone to help. Even if you do not live in NSW, I am sure that
they can refer you to an assistance point in the State in which
you live.
Since I had my cancer I have become part of a trained patient-
to-patient network based on the Sydney Royal Prince Alfred
Hospital wher I was treated. We "veterans" help new patients by
talking through problems with them and sometimes referring
them to clinical or social experts who can assist. I have also
formed a colon cancer support group.
There is a lot of help available out there. You do not need to be
alone. Feel free to get back in touch with me through this
Message Board.
I'm with you.
John
PS: And by the way, I did not lose my hair. J
G'day John small world when i saw NSW it was a ? but as i read on Your in Australia wow!! im origonally from Brisbane Qld now live & work in the USA here my wife is a Yankee from Texas is 42yr age ..Yep yesterday she visited the Onocoligist & yes Folfox was her suggestion. Mate im sorry to read your story you sure have had a test your way ,thank you for writing and shareing Ms Sherri is not out of the woods by any means in this & long ways to go yet but the good news is they may have got this in time as she has no met to lungs or liver & yesterday told her she was stage 3B however she has no TEA marker they are going to give her a PAT scan in Jan 06 befor starting Chemo treatment & want her to build up before proceeding further as it was a big Operation for her & its taken its toll weight wise ill enclose my E-mail its --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- the word is aborigonal for stranger in the land & was given to me by a aborigonal girl many years ago. catch you on line thanks mate & stay in touch . Phil Earle
Sherri & i wish to thank you all for your input, love & prayers, please feel free to keep in touch with us as she progresses, we are new to this "living with Cancer .If anyone wishes more info on the latest 2005 update in Colon rectal Cancer & metastatic research plese feel free to contact me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- i have a 80 min DVD lecture on the subject By Dr Geoge Fisher at the Stanford cancer research medical centre. its exciting news & hope > "cancer is not a death sentance" there is wonderful news ahead & Dr Fisher shares this with us all. Sincerely phillip
G'day Paul and Sherri - the guidelines say that we cannot
exchange email addresses so I am answering on
CancerCompass.
Looking back on my experience, I think that Sherri would be
going through the very worst time right now - about a month
after the big operation and feeling confused, even frightened,
and very weak. It should be mainly upwards and onwards (with
the occasional bump) from now. And yes, they like to wait
another month before starting the chemo so that you are
stronger.
About the chemo. As I said, I didn't lose any hair but a few
people do. As someone else wrote to you, the hair always
grows back, even better. The chemo usually causes some
mouth sores - there is a simple mouth wash that helps. Sherri
should definitely feel some tingling in the fingers and toes
(mild peripheral neuropathy) - but in 97% of cases this is not
serious and goes away after the chemo. The oncologists, now
that they know about it, will keep a close watch on it and
maybe change the chemo doses if it does cause too much
trouble.
They have probably told you that Sherri will have chemo over
three days each fortnight. That could mean wearing the pump
for two days and nights each 2 week cycle. You will both learn
to love it - and sleep with it. Sherri will probably have a
portacath(eter) inserted into her chest and all the infusions will
go through it. I reckon that's miles better than having them
needled into the hands or arms every time you go in for
treatment.
As I said, everyone's different. The chemo only made me feel a
bit crook - as if I'd eaten too much rich food - right near the
end. I worked all the way through the 12 cycles - even went on
some quick trips into the Pacific - to Bougainville and the PNG
Highlands -between cycles. I learnt the rules the hard way
about colostomy bags in the tropics - always use a lot of extra
good glue to make sure they don't come adrift in the heat.
(Sherri might like to remember that information for when the
Texas summer comes up - and always carry spare panties and
a colostomy kit.) I could tell you some rough stories against
myself - you have to laugh through all this - but I won't
because other people who accidentally read this letter might
not like it. It's a bit like what's left behind at Eagle Farm after a
weekend's activity - you'll get what I mean.
It looks as if you are getting a pretty good briefing from the
oncologists. I suggest, however, you make sure that they tell
you in detail about the side-effects. The main ingredient of
FOLFOX, oxaliplatin, is pretty toxic stuff and they will monitor
Sherri's condition very closely. I was/am still part of the original
MOSAIC international FOLFOX trial and it was not known then
that about 2 or 3 in every 100 patients can get advanced
peripheral neuropathy. I am one of the few that has it. But even
so, if I had the choice again, and as a betting man, the odds are
way in favour of having the FOLFOX and I would do it all over
again. One bit of advice that might have been helpful at the
time to a traditional Aussie drinker was to cut right back on the
booze - they now reckon it might have helped. You - and they
- learn the hard way. I am a bit more moderate these days.
You know what it's like in Australia. Everybody likes to have a
fulfilling sex life (even at 64 and beyond!) but when it comes to
a problem nobody wants to know about it. My wife and I could
have done with some good counselling assistance along the
way but we didn't get it. Plus counselling about other issues
such as depression (most patients experience it at some time),
alcohol, and financial problems. We battled through. Things
might be better in the USA - I am active in making things
better here in Australia. Look for - and take - all the advice you
can get.
You will both think I am mad but I have actually enjoyed the
cancer experience. I am a better person for it and I have met
some great people. Only yesterday the senior nurse in
oncology, Annabel, rang me to ask when I would be coming in
to the hospital next. She wants to talk to me about the MOSAIC
experiment. And to wish me a happy Christmas. That's good.
May you and Sherri have the best of all possible Christmases.
And a really good New Year and beyond.
Wombat John.
PS: And I am in touch with some Aboriginal GPs about
improving cancer services in their communities. As with
everything else, their situation is many times worse than any
other Australians. WJ
Phil
Sorry for the naming slip in my last message.
WJ