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[kellyOd]

Officially on the second month, second bottle of mekinist. Still almost no side effects. The rash comes and goes. Never amounts to anything thank god. No fevers, had a few nights when he first started where he was close to 100.4 but never reached it. Seems like he is adjusting well to the combo. Pain meds continue to go down, seizure medicine has gone up. He’s on a new med called Vimpat in combination with the Keppra. Every 20-30 days he has a grand mal seizure so hopefully the Vimpat is going to help. (After the craniotomy this is what we’ve had to deal with) Other than that, we are still trucking on a good organic mostly vegetable diet with a few organic grass fed meats in there, liquid oxygen, and vitamins. Looking into the medical THC oil by Rick Simpson. Expensive, but all over wont hurt him any.. may help. If it may help, and won’t hurt why not ya know. Still in process of selecting the best one for his situation. Spirits have been high! He meditates to keep his stress levels down and become center within himself. A little bit of weight loss but in some sick way he is enjoying it 😂 (he thinks he looks really cut!) I’ll take his jokes ❤️ we are enjoying our time.. it’s still a huge diagnosis, and it’s crazy and takes its turns.. but it seems like it’s not there some days.. he is normal and is enjoying life for what it is right now.. I am posting to share, and to say thank you to everyone here. I have gained so much knowledge and understanding.. keep posting everyone, there’s always someone knew looking for a place when they feel like their world is crumbling.. we can help 💪🏻

[SGHSweethearts]

I am So very happy to hear this. Sounds like overall some very wonderful news. He looks great in his picture. It is still a huge unbelievable diagnosis which will have its crazy turns, ups and downs, but our loved ones are living with cancer. Enjoying your time is exactly right❤️ Live moment by moment, never taking a day for granted. We are going to a tamale street faire, and 2 tree lightings ceremonies. It’s the beautiful little things we are grateful for. By the 3rd month of my husband on the Taf/Mek he was doing pretty well. He went back to work. We never thought that would ever happen. So much to be grateful for. I too have gained so much knowledge, and friends here on this site. I agree let’s all keep posting it helps us and anyone new stepping into this world. I hope you had a wonderful Thanksgiving, and will have a Blessed Christmas.

Michele

[HSsweetheart]

Thanks for sharing the good.

[kellyOd in reply to HSsweetheart]

The good is what keeps me going, for 3 months it was nothing but bad. Horrible thing after horrible thing. The waiting process for the next scans is what makes me nervous. He seems wonderful on the outside, but we don’t know what’s going on on the inside.. is it still spreading? Has it stopped? Is it getting any better?.. these questions drive me up the wall, and I have learned to stay in the moment. (Well I try at least)

[SGHSweethearts in reply to kellyOd]

I am praying for your husband. It sounds like the meds are doing their job. The same thing happened to my husband. I honestly thought we were heading for the worst. The 1st 3 months were horrible, and then he started turning around, and here we are 16 months later. When it works it works. I totally understand waiting for the scans is the worst feeling. Sending lots of prayers. Every day is a blessing.🙏🏻

[Bigsister3]

I love the picture! Thanks for sharing!

[missyrand Ambassador]

kellyOd,

are you thinking about the cannabis oil for nausea control? I hadn't thought of that to help the chronic queasiness my husband has experienced. If so, are there contraindications with the Taf/Mek that you know of?

peace,

missy

[kellyOd in reply to missyrand]

That I know of, no. I talked to his palliative care doctor and she said we could go through her and the hospital to get any medical cannabis products if needed. I’ve seen and haven’t been told of any negative effects of it. The medical use has greatly helped cancer patients as a whole. Especially for nausea. I would absolutely consult your doctor about it! Especially if he’s queasy. Awesome alternative when the Zolfran and other medications don’t seem to work. Ryan doesn’t really have any nausea. I have done ALOT of research, although THC and CBD products haven’t been in many trials to actually medically back up the things I’ve read, I’ve heard personal experience and other amazing things about the products I’m looking into.

[missyrand Ambassador]

thanks KellyOd. Zofran has kept things from being completely out of control, and he's much improved since the infusion of remicade. We are hopeful that 2 weeks from now he will be prednisone free, and the queasiness will end. I'm aware of cancer patients sharing that for some of them use of cannabis has controlled nausea where traditional medicine did not, but yeah, the federal government continues to avoid good clinical trials with use of cannabis/ derivatives. Glad you had the discussion with docs because any prescribed or homeopathic or over the counter meds should be discussed for co-use.

peace,

missy

[kellyOd in reply to missyrand]

So happy he has it under control I know things were crazy not so long ago. Glad the remicade worked! The palliative care doctor has been so incredible. We see her on the 20th along with the neurologist! We just passed the one month mark with no seizures. We are praying this new medicine has got a control on it. I will let you know when we have the product and tell you how it’s working i pray for your husband to be off the prednisone!!!

[SGHSweethearts in reply to kellyOd]

Kelly, how do you get in touch with the palliative care doctor? Is that through your oncologist? We travel to Santa Monica from Irvine for treatments and we wouldn’t change that, we love my husband’s Doctor, but I would like to find a Pallative Care Doctor in our area if possible. We too would like to look into the CBD Oil. My husband has been off the prednisone for almost 2 months after over a year. Amazing, he is trying to come off the morphine now which is proving to be even harder. He still has constant pain, but just hates the morphine. Thinking the CBD oil may be something that would work for him.

Michele

[kellyOd in reply to SGHSweethearts]

I got into contact with a palliative care through our oncology support team at GBMC in Baltimore. I’m quite certain there should be one on the campus you go to. If not, ask your oncologist and I’m sure they can refer you to one. She’s been god sent. It’s just an addition to the cancer team you have, not replacing anyone. The particular one we have deals with pain management in both ways, with medicine and integrative medicine. So meditation diet vitamins they go beyond! I will keep you updated on how the oil goes. I think it’s a wonderful idea and many states have legalized the medical use. It has wonderful benefits. My boyfriend too is having a hard time coming off the morphine, he hates it with a passion but when he tries to whine down he is in a lot of pain. I too think it will help with the pain and that’s my goal to help him in all the ways. Keep me updated and let me know if you find one.

[SGHSweethearts in reply to kellyOd]

Kelly, Thank you so much. My husband’s next treatment is in another week. I will ask his doctor then. I hope to find one that works with both medicine & integrative medicine as well. Look forward to hearing how the CBD oil works with your husband, I pray it gives him some relief. It is legal here in CA, so it would be nice to here that it really works.

Michele

[missyrand Ambassador]

We learned this week at our quarterly Living With Melanoma meeting at Inova in the DC area that palliative care is a really new medical specialty, so there are primarily palliative care specialists associated with hospitals. Usually it takes a request through your oncologist (or other physician who is treating someone for a very serious/ potentially life shortening illness) to get into see a palliative care team, because they work with your doctor and need to share records. The speaker we had used to work at NIH, where there is also a strong palliative cancer team at Building 10 apparently, and anyone in services at NIH can ask for a palliative care consult.

missy

[SGHSweethearts in reply to missyrand]

Thank you Missy, I know my husband’s doctor won’t have a problem giving us a referral. I will make sure to ask for one.

Michele