Had an appointment with the radiologist yesterday and the liver met that was treated with SABR radiation has gone but there’s another met shown up...I’m so disappointed and might have to have the same radiotherapy again or change in the meds...seeing my oncologist next week the day after my auntie Margaret’s funeral...going to be a horrible week
Today I got on my horse for the first time in 3 weeks due to pain...enjoyed my ride but now suffering the consequences...I’ve taken some ocycodone to help with the pain...I’m not ready to hang up my spurs yet but it did increase my pain...difficult to know what to do...fed up
All the best to you all
Barb xx
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Hello Barb. Certainly not what you want to hear. MBC treatment can feel like the “whack a mole” carnival game. You whack one mole and another one pops up. It’s exhausting. You’re understandably feeling raw and vulnerable especially as you mourn your beloved aunt. Please cut yourself a break. You’re going through a lot and you deserve so much better. We are her for you.
Hi, Barb! I just read today how someone's liver mets went away while taking fenbendazole, which if memory serves me <hardly ever does> you take menbendazole, right? Thought I would mention to encourage you, as I just read it this morning on Joe Tippen's facebook page. I remember, before my diagnosis, I'd get so tired and weak from inactivity, then just a few days riding my bicycle or walking and my energy would come back; right now I'm sweating out an exercise bike I ordered on ebay October 7th and they did say delivery would be between Nov. sixth and 20th, but c'mon! now I'm just waiting to cancel and get my money back, but hope springs eternal, right? maybe it will come today or tomorrow! I told hubby I hope I'm not crippled by the time it gets here! I should have just bought it at walmart, but I am spoiled for things showing up at the door. God bless you and heal us all in Jesus name, amen! I hope you feel better soon. PS the lady that wrote the book, Insiders Guide to MBC, went to hell and back with various treatments for years and is still going strong today. I need to read her book again, what a warrior, huh? Fight the good fight, amen!
just saw your reply and thank you because today is day 3 for my fenben and I had forgotten all about it! I'm having a bonescan on Dec. 2nd so I'm curious to see the results as I've been taking it 3 mos. come Dec. 1st. 4:25 p.m. here so nite nite and God bless and heal you, amen! <3 xo
Yes it’s going to be tricky remembering it...much easier when it’s daily...I’ve written in my diary but then have to remember to look in the diary...lol
Hi Barb. Sorry to hear you are going through a rough patch again. I’ve been taking Fenbendazole since Aug 16 and it has done good with my markers. If you remember, my markers went up 2 months in succession 10 points in June then 12 points in July so I knew something was up since markers work for me. After the initial 14 days initial dose 4 days rest then 3 days dose, my markers went down 10 points. At my last blood test 3 November, my Ca15-3 went down another 2 points. I haven’t had a scan yet since I started but at least my markers are going in the right direction. I haven’t had any side effects with Fenbendazole and I haven’t started barking either😄 so it must be okay! Hope you get good results with it too.
Oh that’s good to hear about your markers....I’ve just started the fembendazole and I see from your post that you took for 14 days to start with....I didn’t know you were supposed to do that?... I was going to just do the 3 on 4 off regime...or have I misunderstood?
Hi Barb: Some people chose to go 3 days on 4 days off from the beginning (I did that). Others chose to start with 14 days in a row then go to the 3/4 regime. I think the ones choosing 14 days want to kickstart the process. ❤️🙏❤️
Hi Barb. For the initial dose, I believe you have to do 10 or 14 days straight. Then take 4 days off then start the 3 days on and 4 days off schedule. I just followed Joe Tippens protocol. I’m not sure though if he took it for 10 days or 14 days initially.
I’m right there with you. Just finished another radiation. Still can’t eat real food. It gets to you. It can be overwhelming. All the more reason to get out there, ride your horse then medicate yourself for the discomfort. Unfortunately this is the long haul. And we still have to handle our lives outside of cancer. This will be a hard week for you. Build in time to sleep and give yourself small breaks that let you see life beyond these hardships. Like a ride thru the countryside. I’d love to lay down in the autumn leaves and look up at the sky with all the clouds floating by. Hard to do that in NYC and I might need help getting up. As you mourn your Aunt, I hope you will also celebrate her life and all she meant to you. I am sure that is what she’d want you to do. Hugs
Hi Nancy...I’m hoping you can eat better soon...must be awful...my only experience of not eating was due to nausea and that was bad enough
I’ll get through next week as I’ve done before with other trials
The woods are beautiful at the moment and the stables are in the middle of these very old woods...there’s an old lodge where apparently Nell Gwynn lived when she was King Charles mistress...there’s supposed to be a ghost of a highwayman nearby ...I don’t believe that stuff but there have been reports of sightings
This is always going to be a problem when we take other non prescribed drugs...there’s no way it can be proved which works
I abandoned the COC regime as the side effects were horrible but just started the fembendazole which doesn’t seem to affect me nor did the human wormer from COC....my opinion is this...time is important for us and anything that gives us more time with few side effects is worth it
Even when taking Ibrance and letrazole it’s impossible to know which of those is working...before Ibrance many ladies did very well on letrazole alone so it’s not possible to be sure
I can’t advise you what to do but I’m taking the wormer because I guess it’s out of desperation
In context, my profession was business analyst but previous to that i worked on cancer clinical research. Thats why im trying to work out which treatment works the best old habits !!
I know the chemo and immunotherapy drugs together worked "brilliantly" (oncologists words).
So now i want to know what the immunotherapy alone can do.
I think i'll wait till i know and then add in the fembendazole. That way, depending on the results, the outcomes may also help others.
I-ll report back on this after my immunotherapy only 3 cycle scan. Just had cycle 1.
Barb, can you take half a dose of the strong stuff before you ride? I’m impervious to the affects of my pain pills so in that case it doesn’t matter when take it but I’ve found that if I take it before I start hurting the pain never gets as bad. You might enjoy your riding even more if you weren’t anticipating the pain afterward! The area where your barn is sounds beautiful and slightly haunting. Very romantic!
I’m sorry another liver met has popped up. I know exactly how you feel. Get through your aunt’s funeral, and enjoy the part where you get to see old friends and relatives. After that you can deal with your issues and I know you are strong and can get through it and make the right decisions. Hugs, Elaine
PS...Don’t you wish for a boring life? No deaths, no cancer, no drama.
Hi Elaine...a boring life would be good then we could choose to do things to alleviate it....not having a life controlled by cancer appointments pills worry etc
I take cocodamol and ibuprofen regularly ant top up with ocycodone when needed...the ocycodone is in capsule form so can’t cut them in half...maybe I’ll take one with me when I ride and have it on the way back so it takes effect before I dismount...I’ll work something out...what you say is so true about not letting the pain get on top of you...I always take some pills before I get up in the morning then have breakfast
All the best to you
Barb xx
Dear Barb,
So sorry for the really challenging week you're having. You continue to be an inspiration with your riding and your "fighting it" attitude and actions. I'm confident you'll get through it, I just hope it's all not too difficult. Very best wishes....Lynn
Please swim today and when you are tired take a break. I know how hard it is to always stay positive. It’s a Rowe coaster ride that can never get off of. Hope you feel better soon .
I hope things start to look up, or at least stabilize--which I am coming to learn IS looking up in MBC land. Even though we've never met, you are my soul sister hero here given the horse addiction LOL. I am also considering the dog dewormer, although am not telling a soul--doctor, husband, anyone else. My trainer gave me horse meds for pain after a fall last year, so how bad can dog meds be? Will be interested to hear how it goes for you.
Joking aside, (although horse meds=true story) I am rooting for you, and so glad you were able to get in the saddle after weeks off due to pain, even if it was tough the next day. Better to be in pain after a ride than after something boring and mundane like too long in the car or running errands at the supermarket. Horses do sense how we feel, and are terrific listeners. If someone happened by me talking--or singing--to my horse when we are out riding they would think I had lost it. But it is a symptom of sanity! Am sure you can relate.
I am also so sorry about your aunt. It is a lot to take in...I concur that you should be kind and patient with yourself, even if you want to tell the universe to F-Off. Maybe telling the universe to do that IS being kind to yourself...trying to be upbeat and Zen really sucks sometimes
I am a lousy, nervous Nelly rider, but pushed myself to do my first (and possibly only) competition in eventing about a month ago. (Tiny, tiny jumps..what we in the US call .intro level...me and kids on their fat Thelwell ponies) I was terrified going into the cross country component--my first time galloping and jumping that many jumps in a row, but after the initial terror of first two or three, it was pure bliss. I decided I already have a terminal diagnosis, so why not go for broke and have fun? This diagnosis has already taken away my ability to wallow in the illusion that life is endless and we can blithely "plan ahead" in so many ways, that I don't regret doing something foolhardy " in the moment." Like you, I think my horse intuits he needs to look after me, and he came through! The next day I paid for it with hip and bone pain that I worry is a tumor on my sacrum growing not shrinking Not that I breathe a word of it to my doctors for fear they'll ban me from riding--I have scans coming up, let them be the tattle tale!
My trainer is the best--I made a gallows humor joke that I had to hurry up and do the intro level competition as the "data" shows I may only have two years. She rolled her eyes and said, "Two whole years? You have plenty o f time to get to Novice!" She wasn't being insensitive, she was just being a pragmatic horse person, which is why I love horse people. If I sneak breaks in during lessons she shouts "I know you don't have any white blood cells left, but they're overrated! Keep going!" I guess she's right. It's the lack of red blood cells that make us Ibrance Babes wheeze--and I don't seem to have a lot of those either, but who's counting?
You will be in my thoughts and prayers this week. I hope you can celebrate your dear aunt's life in peace, and double hope they can (to quote the other poster) Whack a Mole that pesky new met into oblivion! In the meantime, sneak that pony some well-deserved peppermint treats!
Yay I have a soul sister!!! I admire you for doing your eventing course....it’s so brave if you...I remember when I used to hunt and the first few ditches or logs I had to jump were nerve racking but once I’d got over them then the fun started....still scared but not totally terrified....that was about five years ago when I stopped that as Monty was getting older and I didn’t want to damage his legs...so I became a dressage diva(!)...I really loved it but it’s 2 years since I’ve competed due to back pain ( didn’t know was cancer at that time...had a fractured vertebrae fgs!)
Now I just hack out as I’ve no energy after I’ve groomed tacked up etc but just being around horses is wonderful but frustrating because I can’t do what I used to do...even driving the horse box is a challenge so I don’t any more....lots of the people at the yard help me if I ask
I’ve not told anyone about the dog wormer....it’s none of their business and I sort of feel people will think I’m bonkers so I’m just doing it....even if it doesn’t work it’s not going to kill me...but the cancer probably will
It nearly did once...ended up Monty falling backwards into a deep pond and falling on top of me...he’s a big lad 16.3 hh Hanoverian ...thought I would either drown or be crushed to death...frightening experience
I so love horse people! I grew up riding as my parents had a stable. I didn't appreciate being surrounded by such wonderful people then, but I do now! Oh if only I had a dollar for each time I was told to "get back up on that horse", despite the tears. I think that has taught me to keep going and do we ever need that advice now! You will prevail and get back up.
Wow. That would have done me in! Glad you were both OK!!
My guy is a failed racehorse. Secretariats grandson (as are half the racehorses in America, as his owners made a killing on stud fees) but slow as molasses.
Pbsoup —I’m no equestrian but I thoroughly enjoyed hearing about your experiences. Thank you for sharing your delightful story. This is another reason I appreciate this message board. Yes, we discuss serious issues about our diagnoses, but I also marvel at the rich life stories that are shared. Learning from all of you about such a variety of topics is the silver lining for me. Bless all of you for being a silver lining
I am really sorry to hear that. You have had so much going on lately. Hearing that there is another metastasis must have been hard. Hopefully you can have the SABR treatment again and get rid of this. If you do that, can you stay on the same treatment? I hope so.
I’ll have to wait to see my oncologist next week but I’m hoping that I can stay onthe same meds and have the SABR even though I struggled with the side effects at least I know what to expect and it did kill the other tumour...it’s the unknown that’s so scary...will another met appear after I’ve gone through all that?
Anyway I’ll suggest to my oncologist that I would prefer to stay on these meds as it’s sort of ‘buying time’ before I have to switch
Keep us posted on what is decided and how you get on. If the SABR treatment was able to get rid of the other metastasis that developed, then it sounds promising about doing the same again with this one. I know what you mean about the unknown. While we are on our current treatment everything is familiar and we know where we stand.
You also mentioned that you have started taking fenbendazole, so let's hope that helps too!
Hmm very bitter sweet news for. I guess the good thing is you know the SABR worked so could work again although I know you had a tough time afterwards with side effects.
Very sorry for the loss of your aunt too - always hard to lose a loved one but harder when you're in emotional turmoil already. I hope just being around your beloved horses helps even if you can't ride as much as you'd like.
When I fell and broke something in my back, I was put on pain medication. The doctors explained that I should take Targin whether or not I'm in pain.Then take oxycodene as needed. The logic being is that the Targin calms things down and raise pain thresholdso when you take the oxycodene you are in less pain and it us more efficient.
May you be blessed from the One Above with a complete cure and we'll being
Never was on a horse in my life...good for you ,you must be brave and adventurous!
Hi Barb, thinking of you . I do hope your aunt's funeral gives you a chance to say goodbye and remember the good times you had together. Well done you on starting the fenbendazole, I have thought about it but not been brave enough yet. Let us know how you get on. Hugs, Fayx
So sorry to hear another has developed. It’s always two steps forward and one step back with this disease.
As you know i’m In the same situation with a met developing in the liver. My oncologist refused radiation (which I think was to do with cost) so i’ve Been interested to know what the outcome of your treatment was. I’m waiting for a scan in December or January. But my alt levels have remained higher than normal. And my meds have now been suspended due to toxicity. So i’ll Find out what my next step is next week 🙂
It's interesting to be able to compare treatments. The oncologist wanted me on intravenous taxol and that might still be on the cards but it feels far less lonely to know I'm not the only one facing this jxx
Not the best news but it is great to know the radiation helped the first time. Hopefully it will do the same with this one. Enjoy your horse.
Barb, I’m so sorry you’re going through all of this. I do think it’s a wonderful thing that you rode your horse—doing something you always loved pre-MBC has to feel therapeutic, though I’m sorry you’re in pain now.
Please know that there is lots of love and support heading your direction from around the world. We’ll all be thinking of you as you face a tough time with treatment and grieving the loss of your aunt. Life is so painful at times, and yet we will fight to hold onto it—all of us together with you. 💕
I am so sorry you have another worry and about the loss of your aunt. I wish I had some words of wisdom for you but I don't. My heart goes out to you. It is tough enough without another tumor and the loss of your aunt thrown into the mix. Blessings, Hannah
Barb, I just wanted you to know I was sending good thoughts to you. I'm sorry for all you are facing. Your energy and kindness are inspiring, and I hope for you an excellent result. I'm sure your sweet aunt will be watching over you.
Sorry Barb for such a late response. I had radiation on my back so I get the side effects. I really never counted on them, nausea, weakness and it hasn't totally gone away. I had radiation on my back and while the pain is all gone I wish the side effects were gone. They have never suggested radiation on my liver. I do start good old traditional chemo on Tuesday and am dreading that. I need a port so they will have to put it in first and then I will have the chemo right after they place the port. I am not only tired but tired of the whole f'ing mess. I feel like i live at the cancer center. Oh well, onward and upward.
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old habits !!
