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Watchful Waiting"

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi all...
Looks like I will be doing the "Watchful Waiting" process instead of chemo.Un-real how things change in two days time!!! I didn't even get to see the chemo nurse this morning, but was instead directed sraight to my doctors office. Apparantly my primary doctor was very un-comfortable with me starting chemo on the 10th, so he contacted my cancer doctor yesterday and they went over everything thats been done to me up to this point... blood work, biopsies,etc. Primary told my cancer doctor that he wants me to get a second opinion about starting chemo versus watchful waiting as a firstline approach. He feels that since my cancer is indolent, stage 3. grade 2/low and not in the bone, I should hold off doing chemo until absolutely necessary. My cancer doctor agrees to a certain point, but said my weight loss of 6 pounds and the tumors in my neck will need to be monitored very closely.She said I will have to meet with a nutritionist at the cancer center and go on a high protein diet to try and add a few more pounds. She agreed to do this watch and wait as long as I promise to come in to her every month for a check up and get blood work done. She said I will also need to do a follow up CT scan and BMB in the next 3 months, as long as nothing aggressive takes place before that time. I was given a l-o-n-g list of things to be watchful for in between my monthly visits to her.I am type A and will now have to be watchful for any of the Type B symptoms. I gotta tell you..I'm ok with this. I am anxious to get the second opinion from another cancer doctor though. My primary is going to set me up an appointment at the Fred Hutchinson Cancer Center in Seattle, which may take a few weeks. I just love my primary care doctor. I have been going to him for 22 years and he has never steered me wrong even once, so I am sure what he is proposing now is totally in my best interest. His main thought process is to keep me as healthy as can be until chemo is just absolutely necessary.He said having a good quality of life now will only benefit me when chemo is the last option left on the table. Sounds right to me... what do you all think?
Sue

yesyes2
Posts: 591
Joined: Jul 2009

Hi Sue,
I'm so happy for you that you get to put off doing chemo at this point in time. I think I love your pmc, he sounds wonderful. Can he come to California to see me? What he said makes so much sense. My oncologist is that way and doesn't treat until absolutly necessary and with the gentlest course of action too. If you opted to do something maybe doing Rituxan maintenance would score for you too. And the second opinion at Fred Hutch is a wonderful idea. You deserve to hear what a major medical center has to offer.

Is it possible that your weight lose is being caused by worry and stress. After all you have a huge reason to be stressed out? Just a thought.

Sending lots of love your way,
Leslie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Leslie,
My primary doc truely believes the 6 pounds I lost was from stress. He also feels the tightness in my tummy could also be stress related. Thats why both my cancer doc and primary want me to work with a nutritionist. I'm a small person and have never weighed more than 130 pounds and that was my highest weight at delivery time with my youngest son, 31 years ago. My average weight fluctuates between 115 to 120 depending on the season...(fatter in the winter). I have been a wreck for the last 30 days and I absolutely know my eating habits changed due to feeling so anxious all of the time. The lumps in my neck also feel the worst when I'm tensed up and anxious. My primary wants me to start massage therapy twice a week to see if that will relieve the tenseness in my shoulders and neck. My insurance covers this, so I'm going to give it a try. Nothing ventured, nothing gained....right? I just have to trust that between my primary and cancer doc, coupled with a 2nd opinion from Seattle, I will be ok. If anything changes or goes South, then we can always do the chemo route. If the docs don't want to rush chemo...then why should I? I'm A-ok with not having chemo until necessary.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Congratulations Sue!

My onc is big on not treating until symptoms get bad too. What surprises me is my onc became my primary, although all tests and such are closely shared and communication is very open with both.

Congratulations, and I have to say it................You happy with the shorter hair?

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Oh Beth...."BIG TIME" happier with my shorter hair!!! I keep asking myself..."what the hell were you thinking all those years Sue?"!!!! Since being diagnosed with F-NHL I can't tell you how much my priorities have changed. My hubby calls it a "re-birth" of sorts, and he "REALLY" likes the various changes I've made in our daily lives. Having "FUN" soooo comes first anymore. Everything else takes a back seat!
Love....Sue
P.S. My insurance co requires the primary to consult with the cancer doc.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Wish MY insurance company would pay for massages.............damn!

I am glad you are happier with the short hair. I can't tell you how much happier I am with mine very short! Takes almost NO time to get ready for work in the mornings. Heck, seems like I can get ready faster than my hubby and that's with me putting on makeup LOL.

You sound sooooooooo relieved, but you're going to be a very busy woman with the monthly blood work and appointments. Just keep an eye on things and tell your onc EVERYTHING, including what you think are non-important stuff.

The last time I went his comment "So what's happened since last time?". Me?? Two things.
Dizzy spells and trip to chiropractor, I thought no biggie. Wrong. I am supposed to tell him if it happens again, called it positionary vertigo and I may need to go to physical therapy for it...hope it doesn't happen again I REALLY don't want dizziness testing again had an ENG one time and it was one of the worst tests I have ever had in my life. The other thing was jabbing pain in my leg periodically.........that was probably nothing but my FM. So, you never know what's important.

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

I know what it mean's to have a primary doctor who is great. My Doc, when I had my first cancer was so caring, when I was in the hospital recieving Chemo and Rad's he would come in and check on me twice a week, he would call me at home and ask about my progress. He closed his practice and is working full time in the hospital, had to find a new primary, he has not called me once. Sorry I rambled there, back to you, I would still seek that other opinion, I think your primary would not be bothered by that in the least.I wish you all the best in what ever you decide!!!!! Take Care Vinny

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Talk about a big hairpin turn on the roller coaster ride. It sounds like you have a highly involved family practice MD and they are investigating all of your options closely. I also think the second opinion is really a good idea. A tie breaker, if you will. Watchful waiting is a really big part of the beginning phase of this disease and many get a very long time. It can be stressful but know that with the indolent types you will not spin out of control overnight and you will be monitored so closely. I know from my experience my oncologist was very conservative and age was a big factor in all his decisions. He felt I was young for this disease as is anyone under the age of early to mid 60's and it changes the way that they manage it. In his explanation he said with younger patients they are looking at having to successfully treat for a lot longer so they space things out more. For anyone in their 60's or above I do not mean to imply that the treatment is better for the younger people just more conservative. He always says he will save the big guns for down the road if needed. I was able to do watchful waiting for awhile and it was a good thing. When the time came to treat it was based on things or changes both of us were seeing so you are not alone in having to monitor your symptoms. The MD's will watch very closely. You seem like such a happy and positive spirit. Make sure you give yourself license to live freely. Know that if and when they need to treat so very much can be done. I have been told that so many people waste their watch and wait time just waiting for the other shoe to drop. One person shut herself down completely, quit her job and refused to engage in life period during her watch and wait and that was 10 years ago!! Sorry so long.....Mary

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi mary,
Yes...this was a hairpin turn for me, but I'm very happy about it. I have full intentions to do my "watchful waiting" in a way that will be fun and exciting for me. I am already soooo relieved and at peace with this decision. Sounds strange to say, but I feel energized with the idea of not having to do anything drastic at this time. It gives me more time to sort through the scary part of just having cancer. I can't help but also believe that by the time I do start a treatment program I'll be healthier in my mind and body to tackle all of the side effects treatment puts on us. I'm still going to stay active with my new friends here at CSN and I'm sure there will still be plenty of questions for you all to help me with. Also...I LOVE being able to lend a supportive voice and follow how everyone is doing in their cancer journey. Even though I'm just starting mine, I know there are soooo many good people here to guide me through it all. I hope everyone is having a good day today...my positive thoughts and prayers are with each and everyone of you!
Love...Sue

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Watch and wait makes you a patient just like the rest of us! :) You have the wonderful attitude and outlook, but don't be surprised if this doesn't come up and bite you in the behind some days! Youre body is no longer just yours. You are now a part of a team effort. Nothing is private anymore when it comes to your health and well being. Soon you'll be dropping your drawers and lifting your blouse without a second thought LOL!!

Just thought I'd remind you :)

Take care and enjoy the ride.
Beth

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Beth...
I'm reminded every day when I look at the lumps on my neck that I'm still on the waiting list for chemo. My new eating routine is almost like having a job. Planning healthy foods to eat that will put on "good" pounds is wayyyy harder than I expected. I actually ate 6 times today. Two substantial meals and four what I call my mini meals plus a few snacks on the side. My kitchen has become my new best friend...ha! Weird routine for someone who never focused much attention around food. I'm getting the hang of it though.
Love...Sue

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