Brain Mets

Please feel free to read, share your thoughts, your stories and connect with others!
cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Brain Mets

Postby cbsmith » Sun Jan 27, 2019 5:56 pm

It’s been a while since I posted on here but I have been lurking most days.

I’ve been sick since before Christmas and we found out on Christmas Eve via CT scan of my head that I had at least 2 brain Mets in my cerebellum that have been causing my sleepiness, nausea, not drinking any fluids, dizziness, and blurred vision. I started dexamethasone steroids on Christmas Eve and it has helped my sleepiness and nausea and allowed me to eat and drink normally. I still have problems with dizziness and blurred vision with the steroids but it better than before the steroids. I was referred to a radiation oncologist over the holidays and they performed an MRI in the New Year. My current oncologist was shocked that it spread to my brain and after consulting a few other oncologists agreed that there was no chemo to treat these tumors and radiation was the only way.

The MRI came back with 3 tumors in the cerebellum and 1 small tumor in the front part of my brain that isn’t causing an issue at this point. After speaking with the radiation oncologist about go forward steps we decided on SRT targeted radiation at the spots in my cerebellum. I am currently done 3/5 SRT treatments. The hope is that once the swelling goes down in a couple weeks my vision and balance will return to normal for a few months. This treatment won’t extend my life but it should ease the symptoms for the duration of a few moths until it spreads further and there is no more treatment. We will continue with MRIs of the brain every 4-6 weeks and possibly do more SRT radiation if it is an option as new brain Mets appear, although we aren’t sure of this plan yet.

My oncologist and I thought it would spread from my para-aortic lymph nodes and lungs and into my liver but it turns out it kept going up.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

User avatar
Jack&KatiesMommy
Posts: 628
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Brain Mets

Postby Jack&KatiesMommy » Sun Jan 27, 2019 10:08 pm

A possible path: Have Foundation One testing done on your tumor....and if you have a moderate tumor burden you could respond to Keytruda despite the fact that you are MSS. It may be worth a try....
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Brain Mets

Postby macpudd » Mon Jan 28, 2019 3:14 am

So sorry to hear your news CBSSMITH, as you can see in my sig I also have cancer in the brain but miene is GBM 4, it was only after the surgery that they said it was not a met but a new pirmary. Had new seizure activity this past few days and am back on dex and more anti epiletics and having an MRI in 2 hours. Any way I had 6 weeks of radium and chemo and more chemo some infections, but I did feel better my balnce and vision improved until this past few days. Hope yor current symptoms will improve as your treatment goes on. Fatigue and skin problems wer from the radium but I hope it will not happen you. Just ask if you think there is any answers I can hepl with.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

AmyG
Posts: 356
Joined: Tue Dec 25, 2018 8:08 pm

Re: Brain Mets

Postby AmyG » Mon Jan 28, 2019 9:46 am

Damn. What a kick in the pants. I do hope your symptoms let up.

Know that someone in the middle of nowhere Arkansas is thinking about you!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Brain Mets

Postby cbsmith » Mon Jan 28, 2019 10:12 am

Thanks for all the well wishes and possible go forward options. Having seen 2 oncologists at my local hospital and also consulting with a larger cancer center it looks like any for, of chemo is off the table now and radiation is the only option. At least for my brain tumors.

We are making the best of it and hoping that the radiation will help over the next couple weeks for the balance and vision.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Brain Mets

Postby cbsmith » Tue Feb 19, 2019 3:16 pm

The radiation seemed to help. I was able to see almost normally the past couple weeks although my balance was still off a bit but was better. The mradiation oncologist said this would improve over the next week or so. Unfortunately I had a reaction to the withdrawal of the dexmethasone steroid which made me sick for 3 days last week as we tried to wean off it. I’m back to a full dosage of it for the past weekend and this week for a few days before we start a slower withdrawal of it. I don’t like it due to sleeping, eating, and rash issues I have had with it but hopefully the withdrawal goes more smoothly this time.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Brain Mets

Postby MissMolly » Tue Feb 19, 2019 5:44 pm

cbsmith wrote:The radiation seemed to help. I was able to see almost back to normal . . Unfortunately I had a reaction to the withdrawal of the dexmethasone steroid which made me sick . . I’m back to a full dosage of it for the past weekend and this week for a few days before we start a slower withdrawal . . hopefully the withdrawal goes more smoothly this time.


cbsmith:
My brother is a long-term survivor of an aggressive grade IV glioblastoma multiforma. There are genuine miracles.

I am familiar with dexamethasone as I am dependent on corticosteroids due to Addison’s disease. The symptomatic distress that you are experiencing in coming off of dexamethasone is due to the effects of dexamethasone on the normal function of Pituitary gland and adrenal glands.

Dexamethasone’s benefits to you were in sharply reducing intracranial pressure and preserving critical brain function. Dexamethasone’s silent side effect was Pituitary suppression of ACTH (the hormone that gives instruction to the adrenal glands) and adrenal gland secretion of cortisol. Cortisol is a life-essential hormone and needed at an intracellular level by every cell in the body.

As your dose of dexamethasone is reduced/tapered, it can be challenging for the Pituitary gland to “re-boot” and regain functionality. The symptoms you feel (nausea, muscle and joint pain, overwhelming fatigue, brain fog, low blood pressure, malaise with flu-like symptoms) are indicators of low cortisol secretion and suppression of the Pituitary gland/adrenal glands. Additional stressors in life increase the need for cortisol and can then accerbate difficulties in attempting to titrate off of corticosteroids.

All to say . . . Pay attention to how you feel and what your body is telling you as you follow the titration schedule. Keep a basic written log to jot down symptoms and time of day when experienced. This can be helpful information for your MD in assessing the titration process.

Some people are not able to fully transition off of corticosteroids when used at a high dose or for a duration longer than 3-4 weeks. Some people need to be on glucocorticosteroid replacement to replace for the cortisol that the body would naturally produce when endocrine suppression persists. Discuss with your MD to have an endocrinology consultation if you continue to feel “yucky” as the dexamethasone is titrated.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Brain Mets

Postby cbsmith » Tue Feb 19, 2019 6:26 pm

MissMolly wrote:
cbsmith wrote:The radiation seemed to help. I was able to see almost back to normal . . Unfortunately I had a reaction to the withdrawal of the dexmethasone steroid which made me sick . . I’m back to a full dosage of it for the past weekend and this week for a few days before we start a slower withdrawal . . hopefully the withdrawal goes more smoothly this time.


cbsmith:
My brother is a long-term survivor of an aggressive grade IV glioblastoma multiforma. There are genuine miracles.

I am familiar with dexamethasone as I am dependent on corticosteroids due to Addison’s disease. The symptomatic distress that you are experiencing in coming off of dexamethasone is due to the effects of dexamethasone on the normal function of Pituitary gland and adrenal glands.

Dexamethasone’s benefits to you were in sharply reducing intracranial pressure and preserving critical brain function. Dexamethasone’s silent side effect was Pituitary suppression of ACTH (the hormone that gives instruction to the adrenal glands) and adrenal gland secretion of cortisol. Cortisol is a life-essential hormone and needed at an intracellular level by every cell in the body.

As your dose of dexamethasone is reduced/tapered, it can be challenging for the Pituitary gland to “re-boot” and regain functionality. The symptoms you feel (nausea, muscle and joint pain, overwhelming fatigue, brain fog, low blood pressure, malaise with flu-like symptoms) are indicators of low cortisol secretion and suppression of the Pituitary gland/adrenal glands. Additional stressors in life increase the need for cortisol and can then accerbate difficulties in attempting to titrate off of corticosteroids.

All to say . . . Pay attention to how you feel and what your body is telling you as you follow the titration schedule. Keep a basic written log to jot down symptoms and time of day when experienced. This can be helpful information for your MD in assessing the titration process.

Some people are not able to fully transition off of corticosteroids when used at a high dose or for a duration longer than 3-4 weeks. Some people need to be on glucocorticosteroid replacement to replace for the cortisol that the body would naturally produce when endocrine suppression persists. Discuss with your MD to have an endocrinology consultation if you continue to feel “yucky” as the dexamethasone is titrated.
Karen


Thank you for all the information. You are right about all the issues I had during withdrawal as far as joint pain, headache, brain pressure, sick to my stomach, etc.

I have been doing lots of reading on the steroid the last few days and my wife has been for a week now. What you mention is some of what we have found. We saw the radiation doctor again today and she has a new schedule to reduce the dex which is a lot longer than the first time. I was doing okay with 1 pill per day but the problems started when we went down to 1/2 a pill per day. We are staying at 1 pill per day when we get there for a period of time and will see if goIng below is worth it or how we do it. At 1 pill per day my side effects where mostly gone so that was a bonus.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Brain Mets

Postby MissMolly » Tue Feb 19, 2019 7:44 pm

Cb:
I am not surprised that you began to struggle when the dexamethasone was reduced below 1 pill (1 mg dose).

Dexamethasone is a long acting corticosteroid. It has a long metabolic half-life and is potent effect per unit dosing as compared to prednisone or hydrocortisone.

1 mg dexamethasone is approximately equal to 25 mg hydrocortisone/cortisol. A normal person with normal endocrine function will produce about 25 mg cortisol a day.

1 mg dexamethasone meets the body’s normal daily 25 mg cortisol need - without any action or input necessary from the Pituitary/adrenal glands.

When you taper below 1 mg dexamethasone, you will feel symptoms of low cortisol if your Pituitary/adrenal glands have not been able to “re-boot” functionally. 1 mg dexamethasone is frequently the dose where people begin to hit a tapering speed bump as 1 mg draws a line below which the body will need to begin secrete its own cortisol to make up any difference to maintain a 25 mg cortisol blood level.

Good for you and your wife for studying up on the effects of corticosteroids. Physicians are not always attentive to the physical distress that low cortisol brings. Sending you best wishes,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Brain Mets

Postby cbsmith » Wed Feb 20, 2019 11:10 am

Thanks for all the info MissMolly. We will definitely research some more and have more information going forward with appointments with the radiation oncologist.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Brain Mets

Postby Pyro » Fri Feb 22, 2019 7:37 am

Rough man, sorry, I thought I was young being diagnosed at 38 years old. You’ve been doing this dance about a year longer than me, looking at your signature, i have also been on chemo forever, like 77 rounds and worry about the chemo not working. I echo the Keytruda remarks.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 3 guests