New Ibrance Dosage And My Protocol

[Survivornow]

My Oncologist decided to put me on every other day Ibrance 100mg. He is determined to kill off the last of my tumors (10%). It's rough, my joints are on fire with my RA, today I've added a Young Living vitamin drink with a drop of Copaiba essential oil daily to fight the RA pain and inflammation. Finally healed my gastritis caused by the anti inflammatory prescribed by drinking chicken broth for several days.

I'm continuing doing detox baths at least 3-4 days a week with Epsom salt, baking soda and lavender essential oil.

I've just started the Panacur C protocol back up after healing my stomach.

I take a BC Powder as rarely as possible daily for my joint pain, continuing my Chiropratic adjustments every 2 weeks.

Taking multivitamins, probiotics, 1 400 mg. D3 2x a day to build up my bones, hair and nails.

I do lymphedema soft brushing at least 2 x a day to control the swelling and pain in my left arm and chest (same side as the cancer).

I swim every day! Special exercises in our above ground pool to help with lymphedema swelling and pain. Once we shut down our pool for winter, I'll go to our local YMCA pool. Exercise is a must!

I've cleaned up my diet even more with added bone broth at least once a week, no sugar free anything unless it's a healthy version. I've found that anything other than stevia or honey makes my joints hurt even worse, and no white sugar ever!

Hardly any red meat unless it's grass fed.

Lots of fresh greens and mushrooms, leeks, fruit, anything anti-cancer!

Frankincense oil drop in capsule every day plus rub it on my chest and ribs. I used Myrrh oil at first, but it's very expensive! So is Frankincense, but worth it.

I drink buttermilk daily as needed for my stomach and eat yogurt every morning for breakfast with added probiotic. Organic beet juice for lymph node cleaning, carrot juice for my stomach, prune juice for you know what! I make a tea with ginger, cinnamon, turmeric and local honey every morning.

And of course, lots of prayers!

I have 10% of this disease left to kill and I will!

Deborah

[LouisaMay]

Go girl! You're doing great xxx

[Godbeforme]

yes! you will! you are amazing; God bless you and heal us all in Jesus name, amen! <3 xo

[Survivornow]

Last Fall my disease was so large that my entire left chest wall & ribs, along with a large mass on my right lung lit up the PET Scan. My surgeon told my husband after exploratory surgery and biopsies that he doubted I would see another Christmas! Yes, I was blessed that the disease had not gone into my organs or other bones. But I firmly believe this disease can be cured. Prayers for all who fight daily for just a few good minutes or days. We all face the pain and complications from the disease and medications. One step at a time!

[Have-faith]

Thank you dor sharing. Great news. Keep up all you are doing. I believe your positive attitude also helps! Faith

[Lilykristymichael]

You sound very proactive. Good for you. I am curious how you know what supplements to use? Did your oncologist recommend? Thanks

[mariootsi]

Deborah here's to killing off that 10%!

[Thrifty51]

I am so impressed by your dedication and resolve. Keep up the good work. I'm confident that you will wipe out the 10%.

[Mindysooty]

Your dedication is so admirable. Well done for it all. I see you have (had?) Chest wall infiltration. Me too. Ive mets all over but this is the one that worries me most along with my neck and chest lymph nodes. Can I ask what the frankinsense does and do you dilute the oil with water or rub it on neat? Also whats the beet juice? Thanks and very best wishes x

[Hidden in reply to Mindysooty]

Hi there.

Been thinking of you. How are things?

Tested an ebike yet?

🙃

[Mindysooty in reply to Hidden]

Hi. I was gng to PM you as not heard from you for a while but didnt want to intrude. Not got to it yet. Not been so great tell you truth but hey ho, dont suppose it can be plain sailing all the time. How are you doing. X

[Hidden in reply to Mindysooty]

Oh Josie sorry to hear you haven’t been good. What’s up? Are your neutrophils still causing problems?

I went to Turkey for 2 weeks. I had an amazing time, and felt quite normal. Couldn’t do some of the activities I would normally do, but I seemed to respond really well in the heat.

I had a nasty encounter with a mosquito and ended up going to a Dr, having my blisters drained and put on antibiotics. I’m sure the mosquito came off worse, after drinking my blood!!!!

I have struggled a bit since coming home with increased symptoms, but my bloods are good, so I’m putting it down to tiredness from the journey home. I’m also not so good during the week off Ibrance.

I’m not sleeping well, hence the strange time of post!!

This mbc certainly is an unpredictable state of affairs. I try and rationalise any new or worsening symptoms in a normal way, not just putting it down to mbc. I find this helps me cope better, and invariably my symptoms come and go. I mean, who wouldn’t be tired and have headaches after a 10 hour journey home?!!

If you need to talk, get it out on here. Or perhaps we could have a proper chat?!!

Keep positive, and do something you enjoy 😊 Clare xx

[Mindysooty in reply to Hidden]

Hi Clare, glad you enjoyed the hol apart from mozzy - pesky blooming things. Wonder why youre not sleeping. Is your mind working over time? I do that sometimes.

Im ok, just feel ill all the time since 3rd cycle. Really bad tummy troubles and bone weary. Cant eat anything. Just been out for our anniversary and I didnt really want to go but Im such a bore these days and thought no just go and make the effort. Literally hardly ate a thing. Started Denosumab ladt time so could be that or yeah, could be a bug. My throat constantly feels like theres something stuck - its not stopping me breathing or anything so dramatic but its just uncomfortable and a constant bloody reminder. Ah well sick of moaning 😏. Xx

[Hidden in reply to Mindysooty]

Blimey Josie you are really going through it!!

Don’t you hate it when there is something to constantly remind you that you aren’t well!!!

Something is definitely not right with you. My literature does say you are at increased risk of infection on Denosumab, and stomach pain can be a sign.

Have you had any bloods done since your last treatment? I had weekly bloods up until I went on holiday. Now they are going to monthly.

Your throat problem must be awful. You must also be worried?!

You don’t suffer with reflux do you? These tablets we take are pretty hardcore, and some of your symptoms could be that. I may be way off!!

What is your Gp like? I went to mine when I was diagnosed and asked her if she would be my one-to-one Dr. I can get appointments in advance, and she sees me to keep up with things. Or I phone the Specialist Nurse and she goes to ask the Consultant if I have any changes.

I’m really feeling for you, and hope you aren’t putting yourself through hell right now. Make sure you spend all the time you need with the Onc. I know I am used to waiting 2-3 hours on my clinic days, but know someone else is needing to ask a lot of questions!!

I don’t sleep too well. Night times are usually when I have the most pain, and when I sweat. My neighbours are going to catch me soon, standing outside in the middle of the night, completely starkers, trying to cool down (now there’s a picture for you).

Keep in touch 😋 Clare xx

[Mindysooty in reply to Hidden]

Haha they'll be calling the police lol. Just had my appointment. Referred to the cc letter and said I was surprised she didnt discuss 3cm/progression with me? She just went on about my next scan (due before my next appointment on 19/9. She was just waffling around it so I asked if she will please discuss anything like this with me. I told her my throat still feels odd and she felt the nodes again - estimating at 1cm!!!!!! I referred to my previous discussion with her when I first started Ibrance when I told her my nodes seem to go up and down but she clearly didnt remember. She just told me what I already know that infection can cause nodes to enlarge! Ah well the good news is the nodes havent progressed to 3cm.

neuts are 1.3 now so ok for next cycle. Sat waiting for meds as I type. Explained all my symptoms and I got told off for not ringing my 24/7 chemo line. I told her I just thought it was side effects but she told me I still had to ring if it seemed worse than usual. Fair enough I suppose.

She wants to keep me on same for now which I agree with. My symptoms may be caused by Denosumab or nothing at all ti do with any of this and just be a bug. If Im as bad again Ill ring the chemo 24/7 line and see results from scan and take it from there. Just need to start eating properly again now and trying to fit exercise in.

Re reflux - i do suffer. I take Ranitadine for it. I sweat at night too. The joys lol.

Hope you and Bella are still enjoying each other 😆. Take care. X

[Hidden in reply to Mindysooty]

Hi Josie.

I wish you had a better relationship with your Onc. It just doesn’t give you much confidence in them when you can’t discuss your concerns.

So you still don’t know if it’s infection or meds related! I guess you just have to monitor yourself to track your symptoms.

I always feel worse when I am off the Ibrance, and get better after a week of being back on it.

If anyone has suggestions for night sweats (apart from aircon), I would appreciate it. They are driving me bonkers at the moment, and my mattress feels hot all the time. I am struggling to get up in the mornings because of the lack of sleep.

Next time I see my Onc, I will ask her about the nodes. Not sure when my next appt with her is though. I have seen her recently because my nurse is off sick.

I haven’t been out on Bella as much as I would like, but we are in for a nice weekend, so will get her out then. A bit of visitor running over is always fun on a bank holiday weekend!!

Hope you can eat more and feel better soon.

😑 Clare xx

[Mindysooty in reply to Hidden]

She's ok sometimes - not all bad I suppose. Its just when I explain my feelings about things like this,there doesnt seem to be any comprehension. Its like she doesnt understand why it upsets me that she doesnt tell me things. Im very clear but she just nods her head and smiles - bit patronising really. Oh well it is what is is. I cant afford to pay privately until I win the lottery lol.

Re the nodes, I did mention again whether it could be the meds making them swell and the Onc and nurse didnt say no outright, they just sort of half smiled and looked at me like I was nuts. She kind of moved round it going on about infection so I assume she doesnt think its the meds.

Oh night sweats are the worst. Fling covers off, sleep 10 mins, pull covers on, sleep 5 mins ...... and repeat! At the mo I just sleep under a very light cover and depending how warm it is with or without jimjams. Tried fan but when Im not having a volcanic wave, it's too chilly and just makes me wake up more. If anyone has any other suggestions Im all ears.

Meant to be getting warm again isnt it this weekend- fingers crossed. I love the warm sunshine. I should move to Spain lol.

Not sure about running visitors over lol although actually could consider with my sister in law 😃😂😁.

I actually have some energy this morning - Im working from home today just 8 until 12 so may have a little sit outside.

You have a lovely Bank Holiday weekend Clare. Be gentle with those visitors 😁.

X Josie X

[Hidden in reply to Mindysooty]

Hi Josie,

I'm sorry to hear that your oncologist doesn't always discuss things with you. I would bring that up and say you really want to know if there has been any change, progression and so on. Perhaps she feels that she is protecting you by not telling you everything, but it's your right to know what's happening in your own body.

I sometimes get that feeling about my oncologist too. I'll give you an example. One of my lymph nodes (the axillary lymph node) tested positive after a biopsy last year and there has been a question mark over my liver since I had an MRI on it last year. But in my recent radiology report it said there was no axillary node involvement and that there is no disease in my liver. It's benign. I wish she had told me that, as I have been wondering about it for ages.

Sophie 💓

[Mindysooty in reply to Hidden]

OMG that's so sifnificant isn't it. If it tested positive before and now no involvement, it means the meds have worked. And no disease in liver. You'd think your Onc would be happy to share that with you wouldn't you. Well I must say I'm pleased about that for you anyway.

Yeah, I have told her so let's see next time. After my scan I'm going to do what you suggested and get a copy of the report prior to my next Onc visit so Im armed and ready with any questions.

Best wishes

Josie x

[Hidden in reply to Mindysooty]

Hi Josie,

Thank you. I just can't make it out! I wish my oncologist had told me. I will have to question her about it when I see her again in November. I never imagined that the positive lymph node would resolve itself. I thought I would always have to deal with that. I'm pleased my liver is in the clear too, so that leaves the two spots on my spine and the primary tumour in my breast of course. But I am working on resolving those too, or at least keeping stable for as long as possible.

I picked up my first click and collect order from Lloyds Online Pharmacy today. I have a few more from Dr Callebout that I need to order, then I will be all good to go when I start my programme next month. I'm going to wait until I get back from America before I start it.

I hope your oncologist will follow your lead and share information with you. I know not everyone wants to know what's going on, but if we have told them we are happy to know then they should really be more forthcoming.

Well, it looks like it's going to be a hot Bank Holiday weekend. I am looking forward to going car booting on Monday. I love stalls that sell homemade pies, jam and fruit and vegetables. Do you have any plans?

Sophie x

[Mindysooty in reply to Hidden]

Your dedication and hard work is paying off Sophie. Im so happy for you and when the time's right I'll be looking at COC.

Oo I love a good car booty, enjoy. Just gng to pick Amy up. Probs go to seaside tomorrow. Also

Lucy my daughter had her 12 week scan this week and has told everyone now so we can start buying stuff. We're going pram shopping on Sunday. Eek. Also piccies to see Lion King and lunch. Chill out on Monday then back to work Tuesday . Good job Im feeling better really lol 😆.

Have a lovely weekend. X Josie x

[Hidden in reply to Mindysooty]

Thank you, Josie! Everything I am doing is a work in progress. I am doing my best.

You must be so excited about the baby. I hope you have fun shopping. There is so much out there for babies, isn't there? Whenever a friend has a baby I have a tough time knowing what to buy, as there is so much available! Have fun at the beach. I bet it will be packed. One of my favourites is Gorleston, near Lowestoft.

Enjoy your time with your family over the holiday weekend,

Sophie x

[Hidden in reply to Mindysooty]

How frustrating for you. I think they actually don’t have a clue.

The nurse I see said she sees 20 people like me, so that’s not many really. Especially as we all have such individual symptoms and cancery bits.

I’m definitely going to ask my Onc next time I see her.

I too use a thin bedspread type sheet. I had one in Turkey and it worked a treat. I do tend to wake during the night cold though. I have a spare duvet at the bottom of the bed which I pull up when cold, then push down when hot, and so on and so on.

My husband said I really snore now, and I think it’s since my nodes have been enlarged!! How about you? Mine is Karma for the 20 odd years I’ve had to listen to his man snores!!

You have a good BH too. It’s going to be a hotty. Woohoo, I’m going to sit in the garden with a good book. ☀️ Clare xx

[Survivornow in reply to Mindysooty]

I developed gastritis from just one anti-inflammatory pill. I could hardly eat without gagging or throwing up, my stomach swelled with the least thing I tried to eat or drink, my ribs hurt so badly from the pressure of the swelling, the swelling caused my lymphedema to get worse and the stomach and chest pain was horrible! Obviously I've stopped the medication after that one pill, drank small sips of chicken or beef bone broth through the day and bumped my radidine to 300 mg twice a day. It took me weeks to heal my stomach!

Get well!

Deborah

[Mindysooty in reply to Survivornow]

Oh no Deborah that sounds very painful. Those anti inflamatory tabs can be so bad cant they. I try to avoid if I can. I cant seem to muster up any enthusiasm for food now, just picking at bits most of the time. Literally had some soup and bread today. Feeling a bit better though so gonna really try - although had my Xgeva injection again today n round 4 Ibrance starts today too so we'll see what happens next. Fingers crossed be ok.

Best wishes

Josie x

[Survivornow in reply to Mindysooty]

I rub the Frankincense oil on straight. Also take one drop in a capsule after breakfast.

The beet juice is to help control my lymphedema in my left arm and chest. It really helps the lymphatic system drain. I'm told celery juice will, too.

Stay strong!

Deborah

[Hidden]

Here’s to getting rid of that 10%.

As with MindySooty above - I an interested in the Beet juice (we both have lymph involvement). Do you have any further information?

Many thanks

Clare

[Survivornow in reply to Hidden]

All I know is that between dry brushing 2x daily & drinking beet juice my lymphedema is finely under control. And I'm told celery juice will also help!

[Hidden in reply to Survivornow]

Thank you. That will probably work for my cellulite too!!

[RLN-overcomer]

Sister/warrior, and yessssssss over-comer. I too take some God inspired Garden of Eden biblical supplements. Look into Blackseed oil. That 10% will be gone in supernatural time. I am waiting for the full praise report. XoXoXoXo