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Old 06-12-2010, 05:34 AM   #1
joyce lutz
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Need input on Decadron vs. Boswellia

My daughter has brain mets and is on decadron right now while undergoing whole brain radiation. It is making her feel terrible and she can't sleep and has only been on it for 10 days! I've heard Boswellia can help with brain swelling and would like to hear from anyone who has info on it or who has used it. Can this be used INSTEAD of decadron? Also, like to hear from anyone who can offer suggestions to deal with the side affects she's experiencing. She has already been through so much! Your help is SO appreciated.

Last edited by joyce lutz; 06-12-2010 at 05:35 AM.. Reason: added content
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Old 06-12-2010, 08:36 AM   #2
Lani
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Re: Need input on Decadron vs. Boswellia

I had posted on Boswellia serrata for brain mets about 4 years ago.

I took my reviewing 83 articles (abstracts) on pubmed before I found this one which only reports on one patient. I know others have tried it so go up to search on the burgundy bar above and type in boswellia and/or boswellia Lani
and see what else you come up with.

GIving Boswellia instead of steroids would be SO FAR from being standard of care that you couldn't see the other side of the standard of care ocean ie, based on perhaps one case or a few , anecdotal cases. I believe if anyone had published about a series of patients it would have been retrievable through pubmed, even if in a foreign language.

I didn't make an exhaustive search ie, it could have been mentioned in an article about alternative treatments for breast cancer brain mets, but usually if someone reports findings they will publish it using the agent they used in the title of the article.

Boswellia is a weak anti-inflammatory which seems to work vs. lipoxygenase, cyclooxygenase-1, nfkappa beta, mapkinase. Steroids are the gold standard to get swelling down quickly and if you do not get swelling down quickly around the brain, the brain suffers lack of blood flow, lack of oxygen and glucose and that can lead to death.

No wonder they don't usually play around looking for safer alternatives to steroids--the trials would be immoral ie denying the trial participant the chance of the standard treatment which has been shown to work despite side effects, and in so doing risking brain injury or death if the trial medicine does not work as well.

Here is the abstract and PMID number. GO to google and put in entrez pubmed, then go to entrez pubmed and put the PMID into the empty rectangular box. It was around article 83 of 192 when I searched pubmed under boswellia serrata.

By the way I have previously posted on intrathecal herceptin and other possibilities. Try the search function above for Lani brain metastases or Lani brain mets

You did not say how many brain mets your daughter has--it makes a difference in treatment.

There are quite a few ladies on this board who have first hand experience dealing with brain mets who can be helpful advising you and your daughter regarding the problems with sleep and other side effects. I am sure they will "pipe in" soon!

Good luck!
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Old 06-13-2010, 01:26 PM   #3
Rich66
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Re: Need input on Decadron vs. Boswellia

Put some brain met info here: http://her2support.org/vbulletin/showthread.php?t=42084

Might be some relevant information here:
http://www.brainmetsbc.org/content/t...out-treatments
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Mom's treatment history (link)
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Old 06-13-2010, 05:14 PM   #4
joyce lutz
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Re: Need input on Decadron vs. Boswellia

Thank you Lani and Rich 66. Will ck out all you have sent me. I'm happy to report that my daughter had a great day yesterday with no headache for the first time in a week and a half!! YIPPEE. She was able to get out to a music fest w/her husband and friends for a few hours and was still feeling good today! I am SO thankful she's had these 2 good days and pray she will have more. I wish all of you the best with your treatments too!
Joyce
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Old 06-13-2010, 10:46 PM   #5
dchips1
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Re: Need input on Decadron vs. Boswellia

Joyce when I had my whole brain radiation the steroids drove me crazy as well. Doc gave me ativan to sleep at night so I could rest. Sometimes I also took benadryl to help. It was not long after the rads were finished I was able to taper down on the dose. Just remember that the radiation is cummualtive and she will probably become more fatiqued down the road. But then she will gradually feel better down the road. Good luck and lots of prayers to you

Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 06-14-2010, 02:42 AM   #6
joyce lutz
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Posts: 84
Re: Need input on Decadron vs. Boswellia

dChips1 - thank you fo ryour post and encouragement. I wish the best for you! Can you advise me about when the fatigue set in and about how long it lasted? Does this, like so many other side affects, vary person to person? glad to see they have decreased your decadron!
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Old 06-21-2010, 08:14 PM   #7
dchips1
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Re: Need input on Decadron vs. Boswellia

Joyce, for me after about 2-3 weeks I needed daily naps and overall when the radiation was done it took me 3-4 months to start to get back to taking only naps every other day or shorter naps. Yes this does vary widely, she needs to rest but she needs to get up and around to keep her body from wasting away, plus it is good mentally to be "entertained" by others if she physically is not feeling well. Puzzling with others builds core strength and helps with focusing, multitasking by talking while puzzling and keeping fingers and wrists moving.

Take Care

Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 06-22-2010, 03:53 AM   #8
joyce lutz
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Posts: 84
Re: Need input on Decadron vs. Boswellia

Thank you for your response. Everyone on the boards is so helpful and amazing!
Joyce
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