Frustrated and need guidance

[Shelby4now]

Hi All. I love spending each evening reading your posts and love your heart felt responses. I wish I had known about this site many years ago. I will give you a short summary 2 bc (5 years apart)1 of them mets into the bones. I have numerous sites scull, t2-3, l-1234and5, s1-2 , both hips , 1 rib, 2 scapula and a few more. I have never received a report without some kind of progression since I started this journey . I consider myself really lucky that the only pain I have had is in my back I do take pain relief. My last MRI showed some more areas t3-4 and a tarlov cyst at s2. Has anyone had this . The pain is unbelievable. I take my pain pills all the break full drugs and nothing helps. I can hardly walk now. Unfortunately my onc went on leave for a year and have been shuffled around to different onc for now. Any suggestions

Take care all of you 🙏🏻❤️

[Hidden]

I had to google what the cyst was. I have never heard of it. I did read it is very painful so contact your family doctor to increase or change your pain meds. You shouldn’t have to fight the pain 😞. I’m sorry you have had this added problem. Your bone Mets read a lot like mine, everywhere.

[Red71]

I reread some of your earlier posts and remembered replying to you about Fentanyl. You were going to try to taper at that point. Are you still on it? What are you taking at this point? I would be talking to my current docs about pain relief. You need a certain quality of life with this disease and it’s up to your docs to help you attain it. Not being able to walk due to pain is not the quality I would accept from them! Is there any treatment for a tarlov (spell check wants to change it to garlic...if only it was that easy!) cyst? Hang in there. Gentle hugs, Elaine.

[Red71]

I just read more about tarlov cysts. It sounds like you need to find a specialist to deal with treating the cyst since it is not common and would not be something that any oncologist would really know much about. Has your current oncologist said anything about consulting someone else? Elaine

[Andersl]

Fenbendazole, dog wormer? Google 'joe tippens' story. Worth reading

Xx

[OceanBreeze3 in reply to Andersl]

Just wondering if you take fenbendazole? I've read some amazing things about it.

[Andersl]

I plan to. I had stage 4 (spine, skull, lungs, liver and dotted in other places) diagnosed in April. Had 3 cycles of doxetaxol plus immunotherapy drugs. Excellent response but got toxicity to chemo so they stopped that.

I didnt take it then as i wanted to know what would help me the most. Now im on immunotherapy drugs only anx i want to give that 3 cycles (ive had 1) to see what response i get to that. Then i plan to start fenbendadozle. However if i get the slightest suspicion of relapse in the meantime i'll take it immediately.

I dont see what there is to lose as i hear theres no side effects.

If you search this site you'll find posts from others or put the question out there and users will answer you

Hope this helps

Xx

[Godbeforme in reply to Andersl]

they are recommending fenben as a deterrent to cancer even for those who have never had it. I've been taking it 3 months now and no more leaky bladder and my fistula seems to have gone away, that has caused me occasional itching and irritation some 30 years. I never expected these things to change, as I take it for mbc, so it can't be placebo effect .... just had to mention ... my friend's son was in and out of the hospital with MRSA many years ago and his vet friend told him about fenben and it even cured the MRSA! <3 xo God bless you and heal us all in Jesus name, amen!

[Andersl in reply to Godbeforme]

Wow! Thank you for sharing. Thats great news.

[Godbeforme in reply to Andersl]

I know! I was astonished! it WAS an anal fissure caused by hemmoroids that I've had since 1990. The surgeon said he could fix it BUT it would have required CUTTING the spincter muscle and he said it could leave me unable to hold my bowel movement, so I said, no thank you, I will deal with the irritation and I did. The "they" I either read this on the mycancerstory.rocks, Joe Tippens website, or on his facebook page. He is the "they"

[Andersl in reply to Godbeforme]

Just to add... who is "they" in "they are recommending"?

[Livinthedream]

You can have stereotactic high dose radiation for pain. Definitely ask your radiation onco

[NPmary]

Ask to see a radiation oncologist, consider radiation therapy for palliation/pain relief. They can figure out how to sa felt give it even if you had it before. This really helped my back pain, improved my walking and quality of life. Pain is manageable almost all the time with occasional half tablet of Vicodin, sometimes ibuprofen or tylenol.