decadron

[mickey]

I am trying to differenciate between symptoms of my brain mets and side effects of decadron. Any insite. Thanks,

[Barbara H.]

Decadron made me hyper, manic, sleepless, bloated, and weak, all at the same time. When I had brain surgery about six weeks ago I convinced my surgeon to get off of it after about 9 days. I hate the stuff. Unfortunately, for some of us it's necessary. What are your symptoms?
Best wishes,
Barbara H.

[mickey]

my symptoms are the usual: non sleep and over eat. I can totally handle those with no complaints. The main one I have found is a weakness in my arms and legs and some shakiness. I am still walking an hour a day, although a little slower and the balance is fine . But I have to watch for mets symtoms since mine went from MM to CM is 2 months and was recommended a second round of WBR but opted for chemo: temodar and xeloda instead and my onc is a little nervous about that.

[Barbara H.]

Weakness and shakiness is caused by Decadron. Have you asked if you could lower the dose or get off of it? You may be able to, if you don't have swelling or headaches. Maybe you need another MRI to determine that, just for the treatment. I would be demanding. Tell your doctor how bad it is making you feel. Your quality of life is important. One thing about being off the Decradon is that you are more likely to feel it if the mets start to grow. I can't give you medical advice, but I would certainly discuss this option with my oncologist. You also want to keep yourself as strong as possible. I would also resist a second round of WBR for as long as possilbe. I would persue the other options that are out there now, and hope that others become available.
Good luck and let us know how you are doing. I'm impressed that you are walking an hour each day.
Best wishes,
Barbara H.

[jojo]

I had been on decadron for a few months early last year. So, when I was reading about your symptoms, I knew right away that they came from decadron. For one thing, I couldn't even hold a pencil and write my name, my hands kept shaking. I also had trouble going up & down the stairs at my house, cuz according to my onc nurse, I was losing msucle mass in my legs, again another common symptom from decadron.

But I'm not too sure about the balance, though... You could be having balance issues, due to some muscle loss in your legs. However, I would want to double check on that one, if I were in your shoes.

Take good care of yourself. Keep us posted.

[jojo]

I forgot to mention that a high appetite and going at 500 mph (in other words, hyper / maniac) were also the prominent symptoms that I had from decadron. I just kept eating, eating, and more eating! And I was talking too fast, always one step ahead of myself.

[DeborahNC]

I don't have mets, but the Decadron and the Benadryl given each chemo infusion was making me crazy with side effects. The Decadron was lowered to 10 mg last infusion, but I was still given 50 Bendryl and had to sit for over an hour to let the side effects subside before completing the chemo. My onc has d/c'd further Benadryl, but does not feel comfortable giving no Decadron at all.

As for the side effects; stumbling, toe dragging, eating binges, have to drag myself up the stairs in my house by the handrail, an all over weird, wired feeling.

[mickey]

Thanks to all. I do not have balance issues and had previously lost 45 lbs so don't mind that either. It was the weakness and shakiness that bothered me most. Does the muscle mass come back. I am hoping that by walking, I am building up. I have always played tennis and worked out.

Hi Mickey,
Barbara gave you great info...

My experience was also muscle weakness/loss of mass. However, yes, it did come back for me. I would be concerned tho', with an extended dosage schedule of the dec. I was initially put on the higher dosage and was finally off after 4 weeks. But it ALL happened in just that time. Horrible. I do call dec the drug from hell.

If you do not have swelling/edema, symptoms, there is NO REASON for you to be on this crap. Yes, it DOES do it's job if you have problems, but otherwise I suggest/hope you get off as soon as reasonable with the down-dosing.

When do you get a follow up MRi?? I have had two, both after two rounds/months after my chemo combo. I have another at the end of the month. When for you?????

I think the walking is GREAT. Good for you, hon.
xoxoxhugs,
patty

[mickey]

I am so glad to connect with you, Patty. You are the one that caused me to mention the temodar/xeloda regime to my doc and although he originally said the only option was wbr, he looked this up and agreed to give it a try, but if any symptoms show up, reevaluate. I am on dec because as well as mets, there was quite a bit of edema in the brain. I am going to get a lowering of dec as soon as I can. I am starting today 2nd round 14 days xeloda, 5 days temodar. Then MRI. Lets keep in touch.

Mickey

[StephN]

With the Decadron I had to take even for a short time early last year there was a lot of muscle wasting in my legs and arms. I had water pockets form above my knees, which got SO weak.

When I think back on all the symptoms I had, the constipation was most probably the worst. I drank a LOT of water and had to also take stomach acid blocker (Ranitidine) as that was another thing that happened. I do not miss having to sit on the potty for 45 minutes to get some "action." Did get a lot of reading done though, kept a book in the bathroom and just read it there!

It has taken me this whole year to get back enough stamina and strength to be able to make it through the San Antonio Symposium still standing. I was pretty beat when I got home!

ALso, try to do some deep breathing and make sure you are getting an extra amount of Coenzyme Q10 as it is a good blood-oxygen carrier.

My balance/clumisness problems were caused by the weakness that followed starting the Decadron, not from my tumor as I did not have this prior to the drug.

Damn that edema, Mickey... and the dec is the only thing that seems to do the trick for that. I did find a trial of a newer drug, but the requirements are pretty 'end of the road', imo.

I am taking another 'risk' by making plans to go south, into some sun and decent weather at the end of the month. I will be out of touch, out of my scheduled chemos until the latter part of March...

With this 'new f*&King rx' deal as of Jan. 1, I am having hurdles trying to get my Temodar. Was 'spose to start this past Tues. and still waiting after more than a week of phone calls, over a dozen people, etc.....

Anywho, I am most eager to keep in touch one way or another and hoping hugely that your MRI with show some good/positive response for you.

hugsxoxox,
pattyz

[mickey]

Again thanks all. I hesitate to take many suppliments when doing chemo for feer of interaction. Currently on xeloda, hercepton, temodar. taking keppra for possible seisure, decadron for edima and famotidine for stomach. I do takea multi, magneseum and a spoon of olive oil. Steph, have you heard of coenzye q10 interfering at all. I would like to add it.

Patty: I like you being ahead of me, so although I am so happy you are going, good move, I wish you were in the lead instead of me.
Mickey

[mickey]

Patty. I spend most of my day trying to get help with the cost of these drugs. If they were intravenious, it would be medical and not prescription. I have had a little help but very little. The temodar costs $500 per pill, the xeloda about $750 per 2 weeks. So needless to say, I will only be on this a short time, then I don't know.

[StephN]

About the COq10 - I let my treatment team know I was taking it and they had no problem with it. I know that many of the gals on treatment here are also taking it. Usually I take 100mg and I had raised it to 200mg for my brain mets.

Maybe do a new post asking who is taking it and what they are on?

P.S. It is not a cheap supplement, but one I will buy over some others if I am short of money as it is also good for my heart.

[Barbara H.]

What does QOqu10 do for the brain?
Thanks,
Barbara H.

[StephN]

Barbara -
In very simple terms one of the effects of the Coenzyme Q10 is to increase the ability of the blood to carry oxygen. This helps to get more oxygen into the brain area, which we need in the brain tissues.
It is known that many cancer tumors lack oxygen and the ability to increase the oxygen can help the radiation treatments work better.

This is the basic premise for the drug in trial by Allos for brain mets patients to take along with the whole brain radiation. By raising our blood oxygen level any of us fighting tumors or even micromets have another tool for our bodies to use.

There was a string of posts some time back about the inability of cancer cells to live in an aerobic environment. Maybe it will come up if you search.

Hope this helps.

A jumble of words rattles on courage, admiration, sadness, the indignities of life, isolation, worry, finances, dignity, why, ...and I cannot put it together in a sufficently meaningful way, but your posts do - and how can I - I have not walked your path.

At the risk of being boring my own little cry is PLEASE read the post on the importance of omega three and six to breast cancer, and think about balancing the intake of omega three and six, - consider fish oil as a supplement. (there are lots of posts on this site or search on google and NCBI for trial information only.

I am not an expert but I keep reading about the importance of omega three to the brain, and the implications of excess omega six.

I copy some abstracts below in case it is of interest.

For me I would put fish oil way ahead of olive if it is a choice.


RB




http://ewatch.prnewswire.com/rs/disp...2813-505716290

ABSTRACT

It's no secret that long-term diet and nutrition choices have an effect on the way we look and feel; but new studies show that nutrition can also affect the way we think. As it turns out, there really is such a thing as “food for thought.”

It may seem strange that what we put in our stomachs can have such a powerful effect on what goes on in our minds, but research is increasingly showing that emotional, mental and psychiatric disorders like depression, bipolar disorder and schizophrenia may more likely be the result of dietary deficiencies than genetic predispositions. The same is true of people who struggle with memory loss, have trouble learning new tasks, have Alzheimer’s disease or simply suffer from a lot of blue moods. The dietary deficiency that tends to frequently show up in these patients is a lack of omega-3 oils -- abundant fatty acids found in cold-water fish like salmon, herring and cod.

Omega-3s and brain health
The omega-3 fatty acid known as docosahexaenoic acid (DHA) is an important ingredient for optimal brain function. Earl Mindell, RPh PhD, writes in Earl Mindell's Supplement Bible, “There's a reason why fish is known as brain food. It is a rich source of docosahexaenoic acid (DHA), a fatty acid that is found in high concentration in the gray matter of the brain. DHA is instrumental in the function of brain cell membranes, which are important for the transmission of brain signals.” By making cell membranes more fluid, omega-3 fatty acids, especially DHA, improve communication between the brain cells, according to Mind Boosters author Dr. Ray Sahelia. As a result, lack of omega-3 in the body can cause a communication breakdown in the brain, which is probably the last place you'd want such a breakdown to happen.

Omega-3 fatty acids are so important to the development and proper maintenance of the brain that “some scientists even postulate that it was the ingestion of omega-3 EFAs that allowed the brain to evolve to the next stage in human development,” according to Superfoods Rx authors Steven G. Pratt and Kathy Matthews. While omega-3s were abundant in our diets before the 20th century, they are now seriously lacking. The Editors of FC&A Medical Publishing write in The Folk Remedy Encyclopedia, “Just like a machine, your brain needs oil -- in the form of omega-3 and omega-6 fatty acids -- to run smoothly. Unfortunately, the average diet doesn't usually contain the right balance of these fatty acids. If you eat a typical modern diet, you probably get plenty of omega-6 through corn, soybean, and other oils in processed food. But omega-3 oils, which are just as important, are often missing.” END




NCBI site trials abstracts..............


1: Anticancer Res. 1999 Nov-Dec;19(6C):5583-6. Related Articles, Links

Increased survival in brain metastatic patients treated with stereotactic radiotherapy, omega three fatty acids and bioflavonoids.

Gramaglia A, Loi GF, Mongioj V, Baronzio GF.

National Cancer Institute, Milan, Italy.

Stereotactic radiotherapy represents a method to effectively treat brain metastases with high precision and with high doses. Few acute toxicities are associated with stereotactic radiotherapy, however delayed reactions may occur and after six months, 20% of patients can develop radionecrosis. To avoid this adverse effect, in patients with metastases localized in critical brain areas, a supplementation of Omega three fatty acids and bioflavonoids has been used. At the end of 1997, we initiated a series of retrospective studies to test the efficacy of stereotactic radiotherapy on 405 patients, and the prognostic importance on survival of various variables among which this type of supplementation. From the comparison of various survival curves with the Cox multivariate analysis, it emerged that the patients using this supplementation had a decreased risk ratio and an improvement in survival time. A decreased number of radionecrosis was noted. We suggest their use as radioprotectors.

PMID: 10697622 [PubMed - indexed for MEDLINE]


1: Asia Pac J Clin Nutr. 2004;13(Suppl):S77. Related Articles, Links

Influence of dietary omega-3 polyunsaturated fatty acid (PUFA) supply on brain gene expression.

Jayasooriya AP, Weisinger RS, Weisinger HS, Mathai M, Puskas L, Kitajka K, Chen N, Ackland ML, Sinclair AJ.

Department of Food Science, RMIT University, VIC, Australia, 3001.

Background - The functional roles of omega-3 polyunsaturated fatty acids (PUFA) are thought be mediated by the modulation of physico-chemical properties of the cell membrane and eicosanoid metabolism. Recent evidence suggests that omega-3 PUFA might also play a pivotal role in regulation of body functions through the modulation of its genetic apparatus. Objective - To determine the influence of dietary omega-3 PUFA supply on brain gene expression. Design - Female rats were fed with a alpha-linolenic acid (ALA) sufficient (CON) or deficient (DEF) diet throughout gestation and lactation. Three groups of male offspring were studied: (1) pups maintained on CON diet, from mothers on CON diet, CON (n= 4); (2) pups maintained on DEF diet, from mothers on DEF diet, DEF (n=4) (3) pups maintained on CON diet from weaning (3 weeks of age), from mothers on DEF diet, DEF-CON (n=4). Brain gene expression of weanlings and adult offspring were analysed by microarray technique. Confirmation of prominent microarray results was done by RT-PCR. Outcomes - Compared to CON weanlings, a total of 24 known genes and expressed sequence tags (ESTs) were differentially expressed in DEF weanlings. Compared to CON adults, a total of 129 genes and ESTs were differentially expressed in adult DEF offspring; a total of 12 genes and ESTs were differentially expressed in adult DEF-CON animals. Over-expression of the zinc transporter 3 gene was identified as the most prominent change in gene expression due to omega-3 PUFA deficiency. Conclusions - Dietary omega-3 PUFA supply influences the gene expression apparatus of the brain and it may be one of the mechanisms responsible for the physiological actions of the omega-3 PUFA.

PMID: 15294576 [PubMed - in process]


AND A SEARCH OF THE NCBI SITE of the term "OMEGA THREE BRAIN" produced the following;

1: Kidd PM. Related Articles, Links
Free Full Text Neurodegeneration from mitochondrial insufficiency: nutrients, stem cells, growth factors, and prospects for brain rebuilding using integrative management.
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PMID: 16366737 [PubMed - in process]

2: Xiang M, Harbige LS, Zetterstrom R. Related Articles, Links
Abstract Long-chain polyunsaturated fatty acids in Chinese and Swedish mothers: diet, breast milk and infant growth.
Acta Paediatr. 2005 Nov;94(11):1543-9.
PMID: 16303692 [PubMed - in process]

3: Lim SY, Hoshiba J, Moriguchi T, Salem N Jr. Related Articles, Links
Abstract N-3 fatty acid deficiency induced by a modified artificial rearing method leads to poorer performance in spatial learning tasks.
Pediatr Res. 2005 Oct;58(4):741-8.
PMID: 16189203 [PubMed - indexed for MEDLINE]

4: Lauritzen L, Jorgensen MH, Olsen SF, Straarup EM, Michaelsen KF. Related Articles, Links
Abstract Maternal fish oil supplementation in lactation: effect on developmental outcome in breast-fed infants.
Reprod Nutr Dev. 2005 Sep-Oct;45(5):535-47.
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5: Ghizoni DM, Alves Pavanati KC, Arent AM, Machado C, Faria MS, Pinto CM, Gasparotto OC, Goncalves S, Dafre AL. Related Articles, Links
Abstract Alterations in glutathione levels of brain structures caused by acute restraint stress and by nitric oxide synthase inhibition but not by intraspecific agonistic interaction.
Behav Brain Res. 2006 Jan 7;166(1):71-7. Epub 2005 Sep 2.
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6: Salthun-Lassalle B, Traver S, Hirsch EC, Michel PP. Related Articles, Links
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7: Roegge CS, Widholm JJ, Engeseth NJ, Wang X, Brosch KO, Seegal RF, Schantz SL. Related Articles, Links
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8: Ribeiro AC, Kapas L. Related Articles, Links
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9: Ma R, Zhu GQ, Wang W. Related Articles, Links
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10: Lim GP, Calon F, Morihara T, Yang F, Teter B, Ubeda O, Salem N Jr, Frautschy SA, Cole GM. Related Articles, Links
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11: Zararsiz I, Kus I, Akpolat N, Songur A, Ogeturk M, Sarsilmaz M. Related Articles, Links
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15: Jayasooriya AP, Weisinger RS, Weisinger HS, Mathai M, Puskas L, Kitajka K, Chen N, Ackland ML, Sinclair AJ. Related Articles, Links
Abstract Influence of dietary omega-3 polyunsaturated fatty acid (PUFA) supply on brain gene expression.
Asia Pac J Clin Nutr. 2004;13(Suppl):S77.
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16: Jayasooriya AP, Weisinger RS, Weisinger HS, Mathai M, Puskas L, Kitajka K, Dashti M, Egan G, Sinclair AJ. Related Articles, Links
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Mickey,
You can't still be working, can you? I applied for, and received immediately, SSD and SSI a year after I was dx'd with brain mets. Didn't know to do it sooner...duh. Anyway, that was the beginning of much help for me, medically......

I had a huge (normal) brain fart when I mentioned my probs with getting my Temodar, forgot your even bigger problems. I'm sorry for that...

I always struggle with the QOL issue, choosing some things that are not the 'norm'...yet I have some small qualms about a few of them. Like this one of going off my chemo schedule, while it is working. I wany to leave lots of good memories for my loved ones, keep making them for myself and others, so I take risks. It is never a quick or easy choice, tho'.

keeping hopful,
xoxoxopattyz