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January 22, 2013 at 10:17 pm #20954
Hi, here is a little background real quick: I have been on Zelboraf for a month now to treat melanoma that has spread to my organs and even one brain met. I had radiation 6 weeks ago for the brain met. However since on the Zelboraf I’ve had tons of joint pain and dropped quite a bit of weight and need some relief. I think the Z is working as some sub cutaneous tumors have shrunk! But another recent issue is buzzing in my ear which is really annoying! I also have been taking Ativan for sleep/anxiety (one pill at night maybe).
Because of this I’m considering using marijuana for a multitude of reasons (hopefully pain relief, definitely to relax, appetite boost). I’m not a marijuana smoker but I’m wondering if it might help. Is anybody out there using medicinal or other wise? Any relief, help?
I realize this is alternative but I hope not taboo. Any input would help.
ShaneJanuary 23, 2013 at 12:25 am #58751
Actually, this is a great topic with the newly approved marijuana laws in a few states. In Europe you are allowed to grow marijuana legally in your yard for personal consumption. If we took the law enforcement dollars for marijuana and put them to other good use (say addiction/mental health programs or melanoma research!) we’d be in a better place. I recently was working with a patient who had very advanced disease and he tried marijuana for appetite stimulation and gained 20 lbs. He is coming back to health with its help for appetite stimulation. There is a prescription synthetic marijuana, marinol, in pill form, that some folks say is also helpful. By all means, talk to your doctor about it. It is far less dangerous than alcohol and could be beneficial. One caveat is that it can make you anxious, so keep that in mind. It also can zap your ambition but I think that applies to young folks!~January 23, 2013 at 1:26 am #58752 Catherine,
Thanks for the response and encouraging the discussion. I live in Illinois and its not legal here yet but up for debate. Personally I was concerned with use after having brain radiation. I will ask my oncologist next time.January 23, 2013 at 7:02 am #58753
I have some concerns about medical marijuanna.
You are not allowed to grow marijuanna in the UK and most countries in Europe. Maybe in the Nether lands you can.
Marijuanna acts through the cannaboid receptors. These were poorly understood and we thought redundant. Now we realise they play a role in immunity.
We do see more unusual infections in heavy marijuanna users.
There are other chemicals also in marijunna that we know are toxic .
I hope you are using a high dose cox2 inhibitor – celebrex. I used this for the joint pains that started 60 weeks after my first infusion of IPilimumab. I had pain in every joint different to the pain i had during infusions. From running 40m a week I went to struggling to walk a few hundred yards or lift anything. Practically overnight found that I could not kneel down or stand still , pain became to bad. Celebrex was slow to kick in about 3 days but then really made my life tolerable and normal. Paracetamol (you call that something else) could be added if I wanted. Cox 2 inhibitors in some people are more effective e than ibuprofen and diclofenac both I had had with little benefit.
As I said it took 3 days of high dose then the good effects started. It always makes me retain water- about 2 lbs at least but it is very effective. Do try it if you havnt.
I think I would take opiates before marijuana.January 23, 2013 at 11:11 am #58754patiParticipant
I would say you can probably get good quality or the medical marijuana without risk of it enhancing health issues (Curious I do not understand why it would lead to greater infections?).
I suffered HORRIBLY from the zelboraf joint pain until we reduced the dose to half, have not try a “joint” for it (LOL) but are always curious…unfortunately you cannot just grow the stuff in your balcony In EU though some countries are very tolerant (Switzerland and Netherlands for example).
Mind you, in reality lots of pot smoking going around me- I was giving an exam yesterday to over 500 first year students and all my students were rolling joints and smoking right outside so…let’s say there is tolerance.
Also, aside from NSAID (which have totally destroyed my stomach so I stay away from them for ever!) and COXi (which is not reimbursed in Belgium) I get huge results with non-traditional healing (yoga, meditation, acupuncture) and a new thing that is working as the joint pains is a supplement called KappArrest (curcumine based supplement a patient with horrible arthritis recommended and I should just say try and see) – I know Catherine does not like much talk about supplements but hey this one works!!! I am sure you can easily check with your doctor about interactions.
I kind of got into curcumine because of the gastritis (helped a lot) and asked a DR working on curcumine and cancer at MD Anderson about negative interactions with anti-PD1 or BRAF inhibitors and he said should not be a problem; this is his name:
Bharat B. Aggarwal, Ph.D.
Ransom Horne, Jr., Professor of Cancer Research
Professor of Cancer Medicine (Biochemistry) and
Chief, Cytokine Research Laboratory,
Department of Experimental Therapeutics,
The University of Texas M. D. Anderson Cancer Center,
1901 East Road, Unit # 1950
Houston, TX 77054, USA
For Emergency, please contact my assistant:
For curcumin information, please visit:
as for KappArrest this is what it has:
Proprietary Blend 1,150 mg
Curcuminoids (turmeric rhizome) * Boswellia (Boswellia serrata) (extract) (gum) * Propolis * Green Tea (Camellia sinensis) (extract) (leaf) * Ginger (Zingiber officinale) (extract) (rhizome) * Rosemary (Rosemarinus officinalis) (extract) (aerial part) * Celery (Apium graveolens) (extract) (seed) * Alpha-Lipoic Acid * Lens esculenta (extract) (husk) † * Trans-resveratrol * Piper nigrum (extract) (fruit) ‡ *January 23, 2013 at 12:40 pm #58755DadZGirlParticipant
I looked into the Merinol that Catherine mentioned here when my Dad (during and after Ipi) could not eat. Since he has lung issues and doesn’t like to be “out of his head” or high in any way we decided against it. The doctor prescribed Megace which turned his appetite around in 24 hours. Basically he was unable to eat for nearly two months prior! He gained over 20 lbs with the help of Megace and is still on it. He started taking it last June. I would highly recommend Megace for appetite, it makes everything taste better and helps him feel hungry. It’s been enough for him.
Hope this helps!
LauraJanuary 23, 2013 at 12:57 pm #58756
Alas, my source about growing marijuana in Europe was innacurate. However, I would check out this site for other alternative medicines: http://www.mskcc.org/cancer-care/integrative-medicine/about-herbs-botanicals-other-products
I do know marijuana has been helpful to some, so it is useful to discuss with your doctor. Massage, meditation, and acupuncture and pretty well proven alternative therapies too.January 23, 2013 at 1:00 pm #58757rochelleParticipant
Medical marijuana has been legalized in the state of Connecticut…so this has been a topic of discussion recently. Let me also add, I am a child of the 70’s…enough said. So…having been through some trial treatment that left me with joint pain for the better part of 18 months…I was at my wit’s end as to how to treat it. Opiates make me sick…and the long term effect is less than desirable. We tried a combination of anti-imflammatories and found some of them can be sedating. I finally found one that worked well enough that I could get on with my life (though there was the risk of heart issues). Fortunately, I found a solution and the pain is a thing of the past. However, should something come up in the future where pot would be a better alternative to opiates etc…I’m glad I live in a state that legally allows me a choice.
MarthaFebruary 13, 2013 at 4:30 pm #58758
Just a quick update. I did press my doctors for something to help stimulate weight gain. I’m still on Zelboraf and have dropped to 140lbs which is an all time low. I’m over 6’1 so you can imagine how thin I am now. It feels as though all muscle on my body has fallen off me.
Anyways, I did start on marinol this week and have noticed a small increase in my appetite. It also gives me the ‘stoned’ feeling which I have to say I’m not crazy about. I am only taking the half dose also because I don’t want to be too ‘out of it’
ShaneFebruary 13, 2013 at 8:51 pm #58759AnonymousGuest
That’s pretty thin. Sorry to hear you’re having a rough time with the Zel. Maybe you can cut the dose back a bit to give you relief and gain some weight and energy. How are the sub cutaneous mets doing?
JeffFebruary 13, 2013 at 11:21 pm #58760
Maybe some physical therapy might help you regain some muscle mass? Just a thought. I’m so sorry to hear of your weight loss. I do know of a patient that did try marijuana and it helped his appetite a lot and he started physical therapy at the same time. Hope things go better for you.February 14, 2013 at 3:36 am #58761erinmay22Participant
Shane! I’ve been wondering how you ar doing!
Dont know much about medical marijuana. But the ringing in your ears – have they checked your hemoglobin lately? When mine dropped really low I was having constant ringing and heart beat sounds in my ears…
Hang in there!
ErinFebruary 17, 2013 at 6:31 am #58762
Thanks for the responses and encouragement. Erin, I did have ringing in my ears a few weeks back and after my first stint in hospital it went away on its own thankfully! (No special treatment although I independently stopped taking atavin don’t know if any correlation). As a former collegiate athlete I can’t wait for the opportunity to do some physical exercise again. I’ve activated my gym membership again but just need a few days of moderate energy to begin a regime again. As for dosage I believe my onc is about to drop me down to 3 pills 2x a day so this may help manage the side effects. I’ve had quite a bit of inflammation buildup which is causing pain in my chest and stomach. This is very irritating and also a cause for lack of appetite I’m sure. The docs haven’t been able to pinpoint causes or able to manage symptoms well which has been tiresome. Anyways thanks for the responses. Will keep posted and best of luck to ye as well.
By the way went to a hilarious stand up show tonight featuring an Aussie Jim Jefferies – quite therapeutic to hear some live comedy.February 25, 2013 at 11:06 am #58763
It is thought that marijuana affects immunity through its affect on cannaboid receptors. Found in gut and other places and first we thought had no important function http://www.cell.com/trends/immunology//retrieve/pii/S0167569998013000?_returnURL=http://linkinghub.elsevier.com/retrieve/pii/S0167569998013000?showall=true ” class=”bbcode_url”> http://www.cell.com/trends/immunology//retrieve/pii/S0167569998013000?_returnURL=http://linkinghub.elsevier.com/retrieve/pii/S0167569998013000?showall=true
Sorry url didnt seem to function how I thought.February 25, 2013 at 11:35 am #58764
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