I recently found this site and am amazed at the wealth of wisdom and experience I’m finding. Thank you to all who selflessly share and compassionately respond to questions posed.
In the spring I was diagnosed with MBC (bones and lungs) and have been on Ibrance and letrozole for about 9 months. In the last couple of weeks I am experiencing what I believe to be mild bone pain. I was dragging my heals on Xgeva but will probably begin shots soon.
I decided to retire and am almost done with all my work obligations. This has been very helpful because I honestly don’t think I could have kept my frantic stressful pace. Having said that, I am sorely missing the income. What advice is there in terms of social security disability?
Lastly I decided to start cbd oil last week without disclosing to my oncologist , but everything I read seems to warn against cbd oil and Ibrance. Thoughts on dosage and benefits?
Thank you!
Written by
LaliChicago
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I'm certainly sorry for what you're going through, but glad you found this very helpful site...
First, re: the pain....Obviously your next scan will tell the full story but I'll mention that the Let + Ibrance combo often causes bone (esp. joint) pain. Plus, if you're getting infusions of "bone juice" (e.g. Zometa) this always makes my bone tumors hurt. I don't think it's in my imagination, but can't guarantee this...
Re: retiring...congratulations! I stopped working post-metastatic diagnosis, and have never regretted this decision. Although I know it's not for everyone....Re: SSDI, you need to apply now! They fast-track metastatic cases and you're all but guaranteed approval (although that might assume that you're younger than retirement age..I don't know if this is true for you. The SSDI benefit is typically higher than the SS retirement benefit, and it continues at that higher rate even after you hit retirement age, so it would benefit you like forever if you would do SSDI...
I found the website to be easy and helpful, and the folks I spoke with on the phone were so professional and wonderful that I realized that all of the stereotypes re: "government bureaucrats" are wrong, and are probably perpetuated by folks who want to privatize everything!
Re: the CBD....gosh, honestly, I'd mention it. Ibrance is such a potent tool in our toolkit, you really don't want to muck with it. No doc will be shocked at this point...many are in favor of CBD for various uses. Even if it's illegal where you are (is it still illegal?), know that they've seen patients who are like addicted to truly scary drugs.... a little CBD oil is nothing to them! (but please do let us know what you learn....I'm tempted to try the oil but even more tempted to start smoking weed again! ).
Stick with the ladies on here whenever you need to
I don’t know what I’d have done without this site...had some bad times (and good) but whatever I was worried about there has always been someone who totally understands and can give me advice
We also have a laugh and share pics etc....definitely not all doom and gloom
As for CBD oil...I sometimes use it but not sure it helps me much...for pain I take turmeric (golden paste that I make) glucosamine and I’m starting sour cherry juice recommended on here
Also for the turmeric, one way to enhance absorption is to try supplement forms that are hydro-soluble. Good luck everyone, and thank you for sharing and supporting!
There is so much support and information on this site. There is also a Facebook group about fighting breast cancer with cannabis. I have read that it can act like grapefruit with Ibrance. I can't remember if that is only with a high THC amount. I have been researching it myself recently.
Regarding CBD oil ...the COC clinic in London told me to use it....why is there such conflicting advice out there?...so annoying as we’re trying to help ourselves and unsure what to do sometimes
Thank you all for your warm welcome! I will definitely apply for SSDI immediately through the expedited link. Yes, I am not yet retirement age.
The CBD oil that I bought is legal and THC free. Though my son tells me that even though they say they are free of THC there is still some amount as it makes people feel better. In any event, marijuana will be legal in my state in 2020. Having said that, there is still DUI with a THC metabolite, so be aware of this possibility.
I see the oncologist today so maybe I will mention the CBD oil. My bottle (again THC free) says do not use if taking meds that bar grapefruit consumption - classic Ibrance warning. I will let you know what I learn. For what it’s worth, I don’t think it’s doing anything, and will look into the turmeric paste and sour cherry juice.
Thanks again - I feel relieved to be able to vent with other battling sisters and leave my family and friends alone for awhile.
Welcome. I don't think it is a good idea for you to use CBD oil without letting your onco know. It may affect the drug or tests that they do. Let your onco know you want to try it and see what she says. But I would never try that without letting your onco now and I would not ask people on this board to suggest how much you should be using because just having stage iv does not make anybody a medical professional. Everybody is different health wise even if we all have stage iv and some may be on more medications than just the cancer ones. You may be surprised, you onco may not have a problem with it and may suggest how often or she may tell you why, in your specific case, it would not be a good idea.
SSDI
You have to be not working when you apply. If stage iv, you would qualify automatically under the Compassionate Allowance. All that means is that you would be approved automatically and know within two weeks. But what most people don't realize is that for the first five months there is an unpaid waiting period so make sure you have enough in savings to cover five months of expenses without any money coming in. You would actually receive your first payment in the sixth month.
Are you actually of age to retire or you just mean that you want to stop working because of the disability? Because if you are at retirement age, you get regular social security, NOT disability. I am collecting SSDI now, but when I turn 67, it automatically turns into regular social security benefits, NOT disability benefits anymore.
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A year into MBC to Bones
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