Excruciating Pain!

[Pachira]

Last Friday I had severe pain. I’ve been laying in bed most of the week as the pain walking is unbearable. My husband took me to Immediate care and after an X-ray. They say it’s schlerosis in the L4 vertebrae that’s impinging on a nerve. Other than taking ibuprofen and acetaminophen there is no solution except to contact my primary care. I’ve just started Verzenio and should start Faslodex next Thursday. I am totally confused as whether I should be continuing on this treatment or is that my life over now? Can anyone give me any advice? Chris

[kokopelli2017]

hi Chris. so sorry to hear of your severe pain and inability to walk. I too have been on bedrest for the past 3 weeks, unable to walk for a different reason, and pain is also intense. so I can empathize with what you are going through. but NO, your life is NOT over.

who is the 'they' that said there is no solution except to contact your primary care? I assume it was the doc from intermediate care? regardless, 'they' did not give you the whole picture. if you have stenosis to L4 and it is impinging on a nerve, then you need to be seen by a specialist such as a neurosurgeon or orthopedic spine specialist. there are many of us, myself included, that have bone mets to spine from mbc, but also have degenerative arthritic issues with their spine/vertebra from natural aging process. or maybe the bone mets gave it a little push and causing the L4 issue. either way, that is best dealt with by a neuro or ortho specialist. perhaps the doc from intermediate care referred you to your primary doc but neglected to tell you that your PCP would then refer you to a specialist. I sincerely hope 'they' did not tell you there is nothing else to be done.....because that is incorrect.

there is definitely hope Chris. please contact your primary on Monday and get a referral to a specialist. and if you cannot tolerate the pain while you are awaiting an appointment....you could discuss getting additional pain meds from your oncologist or primary....just a thought.

as for continuing your mbc treatment plan while dealing with L4 and nerve impingement....I would think you would? but I am not a doc and that is a question for your oncologist. my opinion.

I hope my advice is helpful. and hopefully give you some peace of mind. I will be interested in what others have to say.

pain and inability to walk is such a challenge. I hope you are able to get your 'issue' resolved very soon.....fingers crossed.

send you a BIG hug.....

carole XO

[Pachira in reply to kokopelli2017]

Thank you Carole. I needed to hear the voice of sanity. I’m actually up right now and managed to sit through an episode of “Jack Irish” with a minimum amount of pain. I stopped Xgeva about 10 months ago and now it’s osteoporosis on steroids. The doctor did tell me to call my Primary care and ask for a referral so that’s what I’ll do unless I feel there’s an improvement. She did say there was nothing she could do but I suppose that was the truth. Your reply made me stop and sort it out in my head. I’m sorry to hear about your pain and I know you understand what I’m feeling. Will you be able to resolve the walking problem?

My husband said tonight that the problem is that I’ve always done everything so suddenly to feel that you’re immobile leaves you with a feeling of hopelessness. I’m 72 and my hubby is 80 with leukemia. He’s very fit and has been a runner but I find it hard to lie there and see him tackling so much. Our refrigerator went out, then our GS/husky decided to have diarrhea t/out the house. Doug valliantly cleaned it up then shampooed 8 throw rugs, bless his heart. Never a word of complaint except to say, you’ve done it for me when I was sick.

Thanks again Carole, I really appreciated that you took the time to write. Chris xx

[Contrarielle in reply to Pachira]

Wow Douglas is a hero for cleaning up after the dog!

[kokopelli2017 in reply to Pachira]

hi again Chris. very relieved to hear that you have 'sorted through' and are in a bit better 'head space' at present. so many ups and downs with this mbc. happy to hear you were able to be up for a while last evening. let's hope you continue to improve.....however maybe a consult with a specialist would still be appropriate? time will tell🤞. and yes, being immobile when you are used to being busy and able bodied is a hard pill to swallow. you can't really appreciate what a big deal it is until you find yourself in that predicament....makes you feel both helpless and hopeless at times. as for me, I ended up in the ER 3 weeks ago for 'new' severe pain to my R hip....just got results of mri and have multiple tears to both muscles and tendons. between my compromised spine and now my hip, I am unable to walk....although I can 'shuffle' my way to the bathroom across the hall....thank goodness. I have appt with ortho specialist tomorrow and hope to find out my treatment plan? from what I have read, treatment can range from bedrest (3 to 9 months??), physical therapy, and/or surgical repair. the fun never stops...lol.

will be thinking of you! please keep me posted.

sending lots of hugs....XO

[Pachira in reply to kokopelli2017]

Hi Carole. After asking you about your predicament, I remembered reading your posts a few months ago. I hope that they come up with a treatment plan that works but it sounds like you will need rest to repair the damage. My pain level is much the same so I’ll call my primary on Monday. Please keep in touch and let me know how you're coping Christopher

[Pachira in reply to Pachira]

Don’t know where the Christopher came from Chris short for Christine

[kokopelli2017 in reply to Pachira]

Chris.... good to hear you will be calling your primary tomorrow. let's both keep in touch!

carole 💛🌷

[Bettybuckets in reply to kokopelli2017]

How did the tear happen? That sounds just so painful and long recover. Keep us posted how your are? I have just had a bad fall. Everything hurts. We are quite a group! All falling apart the same but differently!

[Pachira in reply to Bettybuckets]

Yes you’re right there! So glad I found you ladies!

[kokopelli2017 in reply to Bettybuckets]

yup....definitely painful and going to be a long recovery. just add it to the list...lol. thanks for asking Betty. and sorry to hear about your fall....hoping no fracture🤞

[Pachira in reply to kokopelli2017]

Hope you have established a decent plan. I got my referral to a gastroenterologist not really what I was expecting but I tested positive on the fecal exam and they see something on my pancreas. Never rains but it pours. My pain is on my right hip too so I hope they’ll be able to fix yours. Chris

[kokopelli2017 in reply to Pachira]

omg Chris. i'm speechless....straight out of left field. not what I was expecting to hear either. I'm sure you need time to absorb and wrap your head around this new occurance of 'something'.?

so sorry to hear this Chris....sending you a BIG hug. how did they 'see' the pancreas....assuming they scanned you. what is the next step? hard to believe all this has happened since Monday. good that they are moving fast on this and you won't have to wait long for answers....hopefully!

very concerned......please keep us updated.

carole XO

[Bettybuckets]

Hi gals, it took me 6 weeks to right the ship on Verzenio as my onc said. Don’t give up give it a few months. All is not lost!

[TammyCross in reply to Bettybuckets]

What was the problem with Verzenio and what did righting the ship entail? (I wonder what kind of ships we are? I think I would rather be a yacht. Maybe even a sunfish.)

The other Chris - not Christine or Christopher

[Pachira in reply to TammyCross]

Lol. A yacht sounds majestic but I feel like a very old struggling ship. Yes a fish too would work unless we got tangled in the nets!!!chris

[TammyCross in reply to Pachira]

Sunfish is a little sailboat -- basically a board with a cockpit and a single sail. That is what I have and never use anymore. We got through a lot together -- lightning storms, capsizing...seems about right.

[Pachira in reply to TammyCross]

We live and learn!

Ahhh there you are!

[TammyCross in reply to Pachira]

I thought it was a sailfish, close cousin, but no cockpit in a sailfish, just a board. A sunfish is a step up, because you can sit on the deck and put your feet in the cockpit -- and crouch in it if you jibe and the boom is going to hit you in the head. The good old days, when I could worry about such things. Had to watch the youtube clip to see it really is a sunfish.

[kearnan in reply to Bettybuckets]

I just spoke to my onco about an hour ago. I was on Verzenio for almost 3 years (the lowest dosage at 50 mg. twice per day) and falsodex injections. It has now spread to my liver so now I am off it. She said I am one of her patients that had the longest run on Verzenio (but I refused the 100 and 75 mg. bc of the side effects.)

Ibrance I was on for less than three months. I had no idea they could lower dosage. It was a horror the week I was off it. I was shivering and it was August in NYC and I had to shut off the central air. I could feel in my mind how hot my appt. was but I was freezing, and had to lay in bed with several blankets and actually put a towel in my mouth bc my teeth were chattering so much.

That was it. Three months and I was put on the Verzenio and I refused the higher dosages and I lasted three full years on the lowest dose.

[Pachira in reply to kearnan]

That’s very encouraging with Verzenio. I hope your next line will get rid of the liver Mets. I am still in so much pain walking that I have to rest in bed. I suspect there’s a tear or fracture somewhere but it’s a pity when the body has to deal with Faslodex and Verzenio as well as everything else. Betty buckets said Verzenio will right the ship. I hope so as I couldn’t live like this forever Chris

[Bettybuckets in reply to Pachira]

I am so sorry to hear that you are still in pain! I had to postpone my pet scan by a few weeks due to a fall. So now it will be end of June till I find out if it is working. Feel some new pains in back to that is not good but hoping it is just scaneixrty!

[Pachira in reply to Bettybuckets]

We sure have our challenges!

[Mary115]

I I have a series of medical challenges that leaves me sometimes in pain and sometimes unable to get up and get about. When I read about your husband and your interaction I am struck with how deeply you are living life in deep love in action. I do not know about our tomorrows but reading your story, I am struck how deeply we are living the life of love ( even when they are being annoying.LLOL). Thank you for the example

[Bettybuckets in reply to Mary115]

Mary what a lovely thing to point out to a fellow traveler. That was really nice. I agree that their love shines through.

[NPmary]

If you h a vent told your oncologist you should. My guess is you should have an MRI of the spine to rule out spinal cord compression. I am so sorry you are going thru this.

[Pachira in reply to NPmary]

I had a Ct scan then an MRI They said on one that a bone spur was growing and might impinge on the nerve. At least I think that was what they were saying. I think my primary will be able to guide me on the next steps.

[NPmary]

Glad you had it checked out. Hope you get some relief. Let us know, please. Take care. Wishing you pain relief, comfort and peace.

[Gramat]

Enquire about radiotherapy to area.

[kearnan]

I had my stage iv almost go to my spine like two years ago. It was incredibly painful. So my onco also set me up with palliative care (in same building). Dr. Egan is my palliative care doctor who writes the pain meds that my onco does not do.

So I am on a 75 mg. fentanyl pain patch plus I got 240 20 mg. of oxycodone a month although now with the pain patch, I no longer need to use 8, I use about four ONLY when and if I need it.

I had to change my dietary habits (which were a laugh bc I never ate healthy). So now, I am eating at least two apples a day, cheerios whole grain cereal and 2-3 ripe bananas a day bc constipation is an issue.

But I do not deal with pain anymore so glad that my palliative care doctor believes nobody should suffer from any pain due to cancer, if avoidable.

[Pachira in reply to kearnan]

Are you still only on Faslodex?

[Pachira in reply to kearnan]

I’ve been resisting opioids but I will ask about palliative pain meds thank you