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Treatment

Eliz3
Posts: 32
Joined: Feb 2013

Hello again. Wondering if i could get an idea from some of you how long it was from the time of diagnosis till the commencement of treatment please?  Also, is it possible to work over the six week treatment program my sister will be going through.  She is very worried as she is having sharp stabbing pains in the ovary area and bloating, could this be related?

Many thanks for your help. 

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

It was about 6 weeks from the time of my diagnosis until the beginning of treatment.  However, lots of people begin their treatment sooner than that.  A lot of it depends on scheduling issues with radiology for preliminary scans, appts. for initial consults with oncologists, etc.  For me, those 6 weeks were an eternity.

I can't answer your question about working during treatment from personal experience, but I know many people are able to continue working, at least for the first few weeks.  I'm sure some of our other posters will chime in.  I had both pain and bloating in the pelvic region before treatment began.  I'm pretty sure was related.

Eliz3
Posts: 32
Joined: Feb 2013

Thank you SO much for your prompt reply mp327, I will be able to get back to her now at work and let her know, she will be relieved and I am sure it will make her day better.  It has been about five weeks now for her and I am not sure if they will even get started at her appt tomorrow as she has yet to see the Chemotherapist and meet the nurse also.

Guess it all takes time.  She mentioned glands up under her arms today too but I can't imagine that would be part of the cancer as they go away, I am sure she has an out of whack, or depressed immune system at the moment.

 

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

My treatment happened a little bit sooner than Martha's. I think it was about two weeks from diagnosis to the start of treatment. This is usually a pretty slow growing cancer though (as far as I know), so I wouldn't be too worried if things don't happen instantaneously.

Edit: I was able to work for the first four weeks of treatment with the help of my company. They had a special program for people who were going through long-term treatments, like cancer, where they'd pay you for the time you were at appointments so long as you didn't go out on short term disability. It worked out very well. I scheduled my radiation treatments for 3pm, would work till around 2:30 then head off for radiation. Someone (my husband or my mom) brought me to the treatments. Others came alone, but I just couldn't seem to do it all alone. Anyway, after about four weeks the fatigue set in (fatigue from both the treatments and the stress of it all) and I cut my work hours down to 20 hours/week. Stayed at 20 hours/week for a couple of months after treatment then started gradually increasing my hours. I guess it helps to work for a big company sometimes. :)

Everyone's different though. Your sister will most likely have to play it by ear, depending on her specific reaction to the treatments.

I wish both her and you well - it's so very nice that you're there for her. My family's and my husband's support were invaluable to me.

Eliz3
Posts: 32
Joined: Feb 2013

Hi Rose,

I can't tell you how much your replies mean to me, this is my way of helping her, finding out what she has not tried to do yet, so thank you.  At the moment she is working long hours and I am not working, so I have the time, and the desire, to find out all I can.

Your treatment regime would most likely be of real interest to her, she may be able to change her work hours around if they are understanding, guess we will find out soon enough!

Thank you so much, I will pass on this info now and she will be prepared for tomorrow with her questions and choices.

Thank you Rose.

Eliz3
Posts: 32
Joined: Feb 2013

What has dragged out my sisters wait is the fact that someone made her an appt to see the wrong doctor, so she waited three weeks and saw the doctor that you apparently go to if your treatment has not worked, a tough thing to hear when you have not even commenced your treatment.  

Anyway, she sees the Chemotherapist and nurse tomorrow, so then she will know more and hopefully ask more questions. 

Thank you.

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

Wishing your sister all the best. Is someone going with her to see the chemotherapist? It helps a lot to have someone else there. There's so much information to digest that a second set of ears helps a lot. They should be able to tell her what stage she is and what the treatment protocol is going to be. If it varies from 'six weeks of radiation, two rounds of chemo - 5fu and mitomycin or cisplatin' - beware.

Please keep in touch - there are so many wonderful folks on this board who will be very willing to help out with suggestions and advice all along the course of your sister's treatment.

Iat10m
Posts: 6
Joined: Dec 2012

Just wondering why you say beware?

Marynb
Posts: 1134
Joined: Aug 2012

I first started out at a local hospital and they made my appointments with a pediatric oncologist! I realized right then and there that I needed to go out of state to a decent hospital. Delaying cancer treatment is not desirable, to say the least. If they are already making mistakes, go elsewhere!

Marynb
Posts: 1134
Joined: Aug 2012

I was being treated 2 weeks after the initial diagnosis. As far as work goes, I did not work during treatment. I guess it depends what she does for a living. If I were having sharp stabbing pains, I would see a doctor asap or go to an emergency room. With cancer, all pains could be related.

Eliz3
Posts: 32
Joined: Feb 2013

Thank you ever so much, I really do appreciate you all taking the time to reply to me.  

I will talk to my sister tonight to convey all your messages, every bit of experience helps so much as we really know very little at the moment.

Can I also ask why we need to BEWARE if the dose varies, that is making me nervous?  Is anything more than that too much?

Unfortunately I do not live near my sister and she is off for her first Chemo tomorrow, I won't be there till Wednesday, will make sure she takes one of her children with her.

Will definitely stay in touch.

Thank you.

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

Didn't mean to confuse anyone with the 'beware'. Just meant that six weeks of radiation with two rounds of chemo is the standard treatment and that if another protocol is suggested, it would be worth questioning. Sorry about the confusion.

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

I understood that to be what you meant and you were spot on.  Any suggested treatment plan that varies from the recommend protocol should be seriously questioned.  This is why I always encourage newbies to go to the NCCN website and print out the guidelines.  I had no clue such a protocol was available for my viewing when I was diagnosed and just presumed that my docs knew what they were doing.  Lucky for me, they did.  Ignorance is definitely not bliss--knowledge is power!

OMG 1012
Posts: 61
Joined: Dec 2012

Rose and Martha I agree with you both 100%

the guidelines were a blessing for me.  Put me at ease knowing what is standard treatment and protocol

and what I should expect, with out any worries if they were treating me correctly.

I was able to work throught out my entire TX except for 2 wks

which occured right after the 2nd round of chemo ended.

BUT--I worked 6 hr days--not a full 40 hr week.

scheduled Rad at end of work day and by the time I got out of there and home I was

pretty much beat and on the couch.

It is doable and the people on this board were lifesavers for sure

*(that little search box on the top of the page works very well)

XO

 

 

pamela_preib's picture
pamela_preib
Posts: 54
Joined: Nov 2012

I would say work is doable the first few weeks.  I felt pretty good.  After that though I spent far too much time in the bathroom to make work possible.  And the fatigue and pain that I endured would have been too much.  I was grateful for the time off. 

Eliz3
Posts: 32
Joined: Feb 2013

Hello,

Back again.  Yesterday my sister saw the Chemotherapist and the nurse she will be seeing during the next six weeks, apparently they were both lovely, so I am greatly relieved.

Tomorrow we are off to the hospital to get the Radiotherapy treatment worked out but not started.  I don't think she starts treatment for another 2 weeks or so.

She has actually been told to take the first two weeks off and then to see how she feels.  I am glad they told her to, she is working long hours and I really think she needs to give herself a bit of TLC.

I am just wondering if it makes much difference as to your weight when you first start treatment?  My sister is so thin I am concerned it may knock her around a bit.

Hope you are all doing well.

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

I'm glad your sister is on track to begin treatment in a couple of weeks.  I hope she will use this time to do some things she enjoys.  As for her being thin already, that is similar to my situation.  I weighed less than 100 pounds when I was diagnosed and my weight dropped to 92 pounds during treatment, causing my medical oncologist to threaten me with hospitalization if I lost any more weight.  I was able to maintain and stayed out of the hospital, but it wasn't easy, as my appetite totally tanked.  To insure this doesn't happen to your sister, I would suggest that she eat very well during the next couple of weeks and try to actually put on a little weight.  Mouth sores, thrush in the mouth, loss of appetite and nausea can all be side effects of the chemo, which can cause people to stop eating.  Getting enough protein during treatment will be very important.  I had to resort to drinking protein drinks, such as Boost (which I now cannot stand!).  Protein promotes healing, so it's crucial that she get enough. 

I'm glad your sister likes her medical team so far and that she is in good hands.  I wish her all the best!  Please keep us posted.

eihtak
Posts: 886
Joined: Oct 2011

Hi, Glad to hear things are finally underway and you are pleased with your (sisters) medical team so far. I too was thin when diagnosed and eventually unable to maintain my appetite. I had some complications and was hospitalized and put on TPN (a nutritional supplement via IV through my port). I was on this 24hrs a day for several weeks and then 12hrs a day for over a month. I have a colostomy and most of my issues were related to that at the time, non the less, try to get that protien in now and continue as much as possible. Drinks like Boost and Ensure, although may be high in sugar, are great for nutrition at this time. Will keep you in my thoughts and prayers as you move forward to recovery!!

jcruz
Posts: 278
Joined: Jan 2013

Hi

I drank a few commercial protein drinks and really couldn't take the sweetness and fake flavor so I made my own protein shakes with whey protein, greek yogurt and frozen fruit.  I am small but was carrying a few extra pounds when I started treatment.  I only lost 8 pounds.  I was fortunate not to have diarrhea but I also think it helped a lot that I had a protein shake every morning.  Sometimes that was the only nutrition I had in a day due to loss of appetite, thrush, etc.

Good luck to your sister.  She is fortunate to have you getting information for her.

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

yes, it does make a difference becuase the body needs the weight to help with healing.....  i was told by docs at MDA to try to gain weight so i drank a malt every day for a week and ate a lot of stuff and gained 7 lbs.....  then i drank protein drinks 2 times a day,... i hated them but did it any way.... i also ate egg whites....i lost some weight but do not know how much... was too tired to even see it....i could not have worked during treatment.....  sephie

Marynb
Posts: 1134
Joined: Aug 2012

Sounds like everything is moving along well for your sister. You are a great sister to be with her for all this. My sisters were with me every step of the way and I wouldn't have made it without them!

As far as weight goes, believe it or not, I actually gained weight during treatment. Once your sister starts treatment, she will have to eliminate most vegetables and roughage. I had to start eating carbohydrates like crackers, toast, pasta, english muffins, ginger ale. Before treatment, I never ate that way at all. Bottom line, much to my chagrin, I gained weight!
I can't speak for anyone else, but I never once vomitted and I didn't miss a meal.

I think your sister will just have to take it one day at a time and see how it goes.

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