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Metformin, L Glutamine & scans

Donswife48
Posts: 326
Joined: Nov 2015

When I talked with my doctor on Monday I had a list of things I wanted to ask.  Metformin - he said "interesting" then went on to explain we'll know in a year if it will be of benefit.  He does have a couple of ladies in the clinical trial, but for me, he doesn't want to recommend it.  L-Glutamine (for neuropathy), said he doesn't think there is any harm in it, but he personally doesn't prescribe suplements.  He has not had anyone use it with any success for neuropathy, but I know there are several ladies on here that have had success?  (Editgirl?).  Scans-NO.  This is very interesting.  I have never had a scan, nor will I have a scan after I complete my chemo.  He says my microscopic cluster of cells in my lymph node would not have shown on a scan.  He already knew from my biopsy and symptoms that I had uterine cancer, and he feels that following symptoms and 3 month check ups are going to be the best.  I teared up when I told him though that I didn't have any symptoms other than discharge, slightly pink & watery.  He was very kind, but said that the amount of radiation from a scan is the equvilent to many thousands of chest x-rays, and he knows most doctors routinely run scans for their patients, but he does not.  I'm comfortable with that, I guess it's (as Eldri says) a crap shoot anyway.  At least I won't have scanxiety.  And with that, he reminded me that I am doing adjuvant chemo as a backup to surgery.  In the end, I'm OK with his treating me, I guess now I'll see at the end of my chemo if he mentions pelvic radiation.  I'm thinking not, and I'm prepared to pepper him with questions if he does.  Hugs Nancy

Hybridspirits's picture
Hybridspirits
Posts: 209
Joined: Nov 2012

I had success with L Glutamine and when i backed off and didn't take it i had issues and when I started it up it did work.  Scans.  My oncologist agrees on Cat Scans and I get an MRI every 6 months as I was explained that symptoms don't always show early in the process.  SOme ins companies don't pay for MRI's but mine does and have had them since 2013 every 6 months and will continue through at least 5 years every 6 months

note my Oncologist is very conservative and hates extra radiation.  This was also what Dana Farber suggested (including the L Glutamine.

hope that helps

Sharon

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

my medical oncologist was pretty firm about not having one between chemo and radiation and said we would discuss scans after front-line treatment was complete.  I had one scan right after my diagnosis to determine whether there were any other tumors outside of the uterus which there were not. My second opinion indicated that, in my case, neither CA-125 nor CT scans had been shown to affect long term survival because most recurrent disease was found through signs or symptoms.  However, they did recommend CT scans every 6-12 months to "confirm prognosis."  That has an ominous ring to it, doesn't it?  This concerns me a little bit because I had almost no symptoms before diagnosis.  My other concern is that I know these cancers can be resistant to chemo.  Wouldn't we want to check now to make sure there aren't any more new tumors that have popped up during frontline?  Questions to ask when I see my doctor.

I did use L-Glutamine during chemo to help with intestinal issues and neuropathy.  My neuropathy was very minor.  Was it the L-Glutamine? I don't know, but I have no reservations about recommending it to women to try as my doctor also recommended it along with B-vitamins.

Chris

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

My local Oncologist wants me to have them every 3 months. I had one a week after my last chemo.

I'm concerned about getting them so often and plan to discuss this with my Gyn/Onc when I see him on April 1st.

I'm thinking every 6 months is more reasonable. Especially since I will be visually checked every 3 months for the next 2 years.

I saw my Radiation Onc's PA today to get my dialators. She said if there is no recurrence in 5 years, it is considered cured. So, I suppose we are considered in remission until then? I didn't ask that question though.

Love and Hugs,

Cindi

 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

Cindi, CT scans every 3 months????????  That is a lot of radiation.  I have kept count of the CTs I have been given.   Please ask how necessary this is.  I was told I always had the "right of refusal" in my treatment.  (I said "no" to tamoxifen for a BENIGN breast lump - crazy doctor!)  It appears sometimes we have to be the common sense in making decsions with our treatments.   You may want to consider asking a few questions for yourself.

http://www.consumerreports.org/cro/magazine/2015/01/the-surprising-dangers-of-ct-sans-and-x-rays/index.htm

I had one CT after all the treatment ended (ended 12/19/12) in January 2013 and I think that was to make sure they didn't see anything there.  Haven't had one since.  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

Just read the article. I am definitely going to challenge this!

GoodLuck15's picture
GoodLuck15
Posts: 9
Joined: Mar 2015

Cindi: That is a heckuva lot! My gynecological oncologist told me that three months is too short of time to be able to actually see anything if you had something to worry about. He also said, in his opinion, that it is most often the for-profit hospitals that push frequent scans.  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

My local place is a for-profit cancer center!

Now that my chemo is finished, I'm wondering if I should stop going there and just work with my surgeon and radiologist.

I think I'll ask my surgeon about this too.

Thanks for the info.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1428
Joined: Oct 2015

I see my oncologist's PA next month for my first exam since I had my last chemo.  I don't know if they'll do a CT scan or not.  Do they wait until you're coughing up blood before they check your lungs??  On the other hand, that much radiation is not good either!  

I take Metformin since the chemo caused my blood sugar to go so high.  Even if my A1c is normal, I'm going to ask my doctor to let me keep taking it.  I'm going to ask her about L-Glutamine to help my fingers and toes although....every week they seem to get a little better and pretty much all the numbness in my face (cheeks) is gone.  

I asked my oncologist about radiation and he just told me I didn't need it.

Isn't is interesting how different oncologists have different ideas about how we should be treated?  I wonder if it's like this with the more "popular" cancers like breast cancer?

Love,

Eldri

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I ask about the metformin the last time I saw my Oncogist and he knew about, said there as research going on with it and that it had not be approved for use with my cancer yet.  He has said in the past that he didn't have a problem with me trying supplements like L glutamine, but that he didn't know of anyone that it had worked for.  I get scans about every 3 months, but they are not to check to see if cancer has returned, but to see if the chemo that I am on is doing anything to reduce the tumors that I have.  Just had a MRI and can't say that I like that very much.  Lou Ann

Donswife48
Posts: 326
Joined: Nov 2015

I had to have a MRI to check my back for stenosis, none thankfully.  I knew I would be anxious about closed in so I tried not to look at the machine and sat on the table, asked if I could pull my wide sport headband over my eyes, they laughed and said that would work.  I was effectively "blindfolded" when I entered the machine, it felt like it was just hugging me, and I did fine.  They said they were going to remember that trick for people that hate things inches from the face.  Come to think about it, that was a little more than a year ago, apparently I didn't have any cancer show on that.  Yeh!  Hoping you get good positive results.  Hugs Nancy

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

The closed in space didn't bother me and they gave me headphones with music to listen to.  I asked for classical or country and the girl gave me Bluegrass.  My back hurt so bad and I knew if I moved they would have to start all over. It took oven an hour anyway.  I think I walked out looking like a zombie.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I had a scan right before surgery and another one about a month after surgery.  That was over five years ago.  Standard at M.D. Anderson is no scan unless you suspect something(elevated CA125, knots,nodes swollen,ect).  I asked my dr. about it since I had read about everyone having them done routienly, and as she said " Why do a scan that could give you cancer, when you are looking for cancer that you show no signs of".  I'm glad, ignorance in my case is bliss!  The exam and CA125 are all the anxiety I can handle!  Best, Debra(Jo)

bluehyacinth
Posts: 47
Joined: Feb 2016

I had a PET/CT scan before surgery and I just had one half way through chemo to, as my oncologist explained, to see if the chemo combo is right for me. My rad oncologist said it would not be helpful for him as the radiation is working on its killing several months after stopping. I am serous stage 3C2 grade 3 aggressive, but had I had less chemo brain and read this I would have said no and waited. For followup my oncologist said perhaps one more pet/ct then 6 month MRI scans.

 

Yeah I like the "why add to cancerous scans to a no symptom cancer".

molimoli
Posts: 514
Joined: Aug 2014

I wonder how a doctor would guess  that my cancer returned if I was not having routine scans, since I felt nothing different about my body in any way before diagnosis or on recurrence ,not until my pelvic tumors (recurrence) were about 10 cm before I sometimes felt a slight filling of space in my pelvic area  although my ct scan picked them up when they were less than 2cm. I don't feel or sense them at all now but common sense tells me by now they must be larger. Not to worry as exploratory Laparatomy is just a few weeks around the bend.

There are a few oncologist in Canada who feels that there is no cure so troubling the patient with scan results makes no sense, they feel that the bodies will notify when cancer is actually causing it to cry out in one form or the other. Then they will give more chemo or radiation hoping for ease of symptom.' not cure, not ned  , just symptom control. . I should know so I can fast forward living or slow down and breathe a bit, that's my right. What's the point of me ducking scans ( within reason  6mths. to yrly) Then watch Tv or use computers etc ,etc. one could go crazy pondering this.

As one doctor told me on one of my querries last year "this cancer you have will kill you long before a cancer from ct scans gets out the gate.We both had a laugh ,I believed him. The reality of it jolted but his delivery of the reality amuses me in a shocking way.The thought of the exchange  cracks me up .

I don't know which opinion is wrong or right but I need to know when my body is not behaving as it should so I ask for and get one every 6mths so far. My surgery will explore all my organs from my neck to my tail and he will take out any suspicious lumps or mass that he can see with magnified goggles, so I should be good to go for a while,providing I survive the oh so unnatural exploration, Geez!! then I will ask for yearly scans as I know the nature of this sneaky alligator I am dealing with.

Moli, wishing you all a lucky weekend.

 

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

My gyn/onc does a CT scan after chemo to have a baseline to compare if anything shows up later. I had one scan before surgery for another problem, but after surgery and chemo the insides will look different anyway. This way, he says, if I get new symptoms or he visually sees something on the pelvic exam, the scan can then be repeated and any new spots should show up.

In short, no new scans for me unless there is a reason. UPSC most often recurs in the cervix or abdomen before it goes to the lungs, he says. I was 1A to begin with.

ConnieSW
Posts: 1497
Joined: Jun 2012

This is my treatment plan and I am comfortable with it.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

I was also 1A.  And it sure seems like more of the ladies are under the same after care. Just one more reason for me to push back on this every 3 month idea.  What would we do without this board?! Love and Hugs, Cindi

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Instead of cervix, I should have said "most often recurs in the vaginal cuff or vagina or abdominal wall" (as I have no cervix at this point, obviously).

Kaleena's picture
Kaleena
Posts: 2024
Joined: Nov 2009

With regard to scans, I probably had scans twice a year since 2005 - In 2015 alone I had 4 PET scans, a CT scan, an MRI and 4 chest x-rays plus numerous ultasounds/CTs without contrast and an ERCP.   I have had one PET scan for this year already.   That glow you see at night is probably me!   Tongue Out

pam0422's picture
pam0422
Posts: 25
Joined: Aug 2015

Kaleena - Judging from your incredibly glowing complexion in your profile picture, you would glow even if you never had radiation. The glow coming from the strength and warmth of you ladies on this discussion board could be another Milky Way.

 

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

i had scans before the surgery and a type of scan before radiation. I seem to be the only one in the group to have all my radiation before chemo. Now I've had the first chemo(yuck) and my oncologist hasn't mentioned when I will have a scan again. 

Anyway I would be interested and hearing more about that other chemo drug you mentioned Don's wife because after my first chemo the worst side effects have been big time pain in my knees and now ankles and feet. More problems to come and worse. Is that what I'm looking forward to? I know I should get on the chemo thread again, too to read about more effects.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

Hey Soup,

Definitely read the Ladies Going Through Chemo thread again.  It is loaded with the side effects that several of us encountered. Some worse than others.

I'm not going to lie, chemo is hard to get through. But, I can tell you this - for me... I'm so glad that I was able to complete it. I have a sense of calm knowing that I did what I could to prevent a recurrence. And, as of today I can say that I feel more normal than I have for a long time. Still dealing with my feet hurting from the neurapothy but my energy is a lot better and I'm watching my hair come back in every day.

Good luck to you and I hope you have an easier time with the next one!

Love and Hugs,

Cindi

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