Bad news - tumour skull bone

Oh, Bellen!

This is awful news.  I am so sorry to hear of your new battle. It all seems unfair. 

I have no advice to offer for your balance, other than take it very, very carefully; especially driving. 

I had major balance and vision issues with chemo and ended up wrecking my husbands car. Luckily I smashed into a large rock and not an innocent person.

I wish you all the best, and please know you will be in my thoughts and prayers. 

Tru

 

This is very tough news.

This is very tough news.

There is a bone cancer forum and that might be a better place to look for advice in this area (I don't know anything about it).

Old Timer (5 years..)Advice

I don't think we've met.I'm sorry this is happening to you. I'm a Stage 4, current NED...lots of surgeries and even lived through hospice once..so I will say, never give up my luv. Even if everyone around you does (unless you're ready and it's what you truly want)..there really is always hope. 

Other advice...if you have the ability, go to any amazing hospital. I had a tumor right between my carotid and femeral artery, had already eaten through my vocal chord (last go-round>...docs here said "Oh, that's tricky. I'm not sure we can get it. It's dangerous. Maybe hopeless. I went to mayo in Rochester and surgeon there said "oh year, we can get that. Relax. No big deal." Such a difference in outcomes! One vocal chord. One lung. Half of intestines. Ostomy. Hysto. I'm running out of organs and now sound a bit like Janis Joplin in the mornings lol...but still around

Also, depending on stage and what you're willing / able to do...clinical trials? Immumno seems promising. My onc says unless it's the end of the line, only go for Stage 3 trials and above. Mayo was offering an open trial this year...may stell be open. Worth checking. It was stage 2...but i almost went anyway. I have HNPCC so genetic (so they say)...there isn't a targeted immuno for me yeet, but they are working on it. Check MD Anderson and Sloan Kettering...keep looking for answers, always.

Are you open to marijuana? CBD? THC? Charolette's web and Realm of Caring suggest that THC is needed along with CBD, as do studies in rats/mice etc. There's a lot of good info out there...and a lot of bad...and no promises...but it's worth a shot IMHO, as long as you keep doing other treatments and don't rely on it to save you all by itself. Some people feel it's complete baloney...but there are reliable studies going back to the 70s at least, Nobel Prize physiologists and so forth that show apoptis in cancer cells with the right dosage...and you aren't going to OD on pot...and it won't counteract chemo etc. If you get serious and want to try it, you can produce safe oil with a copper distillery bought online and a few simple tools. Not cheap but that way you know what you're getting.

I'm not sure how I would cope with what you're going through...there's only so much we can all take spiritually and our bodies seem to get beat up a little more each time...but I do know, if ypu've come this far you are strong...so strong.

One day at a time. My mom says, you can live through anything for one day. Can't you. No matter how miserable I feel, I always think,...yeah. I can. With a little help and love, something to live for...I can. Then it doesn't seem so overwhelming. I start living my life in moments, not years...and the moments seem longer, more intense. If that makes sense..? Physically, I don't have ways to make you feel better...I've not experinenced your situation...I'm keeping you in my thoughts.

Bellen said:

Skill tumour

Thank you all for your well wishes.  Plans right now are to have a biopsy to determine this tumour's origin - not thought to be CRC met.  I will see an ENT this week.  Clinic dr thinks I may have vertigo and my balance issues may be related to this, and not so much the tumour.  I have some meds to take - pills, ear drops, nasal.  Will confirm this with the ENT this week.  I really need some relief from the dizziness - it really affects quality of life - fingers crossed this can resolve soon.  You're all so strong and fighters, and I do intend on doing everything I can - things go a bit too slow though when you're waiting for news, appts, phone calls, etc.  Carrieh - I am in the process of looking into medical cannabis.  Thank you all For your input and caring support.

Vertigo

this I can help with! It's just horrible isn't? You need to find someone who can perform the Epley maneuver on you, it's just movements of your head a certain way.  You can look it up and there are ways you can do it yourself but be very careful. You also need to figure out which is your "trigger" side usually one side brings it on worse than the other. Get up very slowly avoid lying flat, not sure if this works for everyone but I find the minute things start to spin staying totally still and squeazing My eyes closed helps end it quicker. For me sinus issues bring it on, as well as dehydration. The medicine just seemed to make me tired so I only took it before I went to bed.  It's just horrible I understand exactly what you are feeling, I hope it resolves quickly. 

Hoping

the doctors will be able to resolve your dizziness soon.  I really have nothing to add except for my hope for a speedy recovery from this latest medical issue.  

Wishing you well

pam 

I hope you find some joy in the season

though I have no doubt that you will have to look hard.  Just the anxiety as you waiting for your biopsy would be bad enough, but to have to suffer the dizzyness, is awful. 

I had a conditoin called BBPV - Benign Paroxysmal Positional Vertigo, and it was truly awful. I was sick to my stomach and thowing up. My conditon was caused by a canoing accident. It is about 90% gone, just a clicking in the ear, though it does come back if I knock my head, or hold it in a certainl position for a long time (like watching fireworks).  It was miserable, and yours sounds so much worse. 

We are definitely here to support you, and wish that we could do more. 

Tru

 

Bellen

The trigger side would be similar to what Tru said what position kicks in the vertigo or spinning the most. For me if I turned to my left the world would spin but not the right so turning to left was my trigger side. You said they did a procedure on you was it something where they turned your head in certain ways? If that was it and it didn’t work it might not be vertigo. Did they give you  antivert to take? Meclyzine is the generic name that might help, sometimes that helped me. I know when I have an episode it is pure misery, my heart goes out to you because I do know how difficult it is to function. I hope that they help you soon it’s not ok that they are letting you deal with this for so long.