The Colon Club

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.

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....

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.

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!

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.

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.

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

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.

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

Thanks for all the info MissMolly. We will definitely research some more and have more information going forward with appointments with the radiation oncologist.

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.