Hi ladies, after feeling down, having chest pain and feeling tired all the time I now feel ok. Goodness knows what was going on the week I was off my Ibrance. Anyway, I had my bloods done and results were good. As I had chest pain I had to see a Cardiologist and have an ECG. That was all ok. Then I had to have a special blood test for Protein to make sure nothing was interfering with my heart, that was fine after a four hour wait for results I had to have the Registrars ok to have my meds.
Apparently the pain is from the mets in my chest wall and ribs and also the acid reflux I have isn’t helping. I must say I’ve had good care again this week and was happy with the attention I was given.
Seems as though I will just have to persevere with pain when I get it. As for the reflux, I have to take Omeprozole. The worrying thing about that is it destroys Vit D which is what I need. I take it occasionally so I’m hoping it won’t interfere with my vit levels to much.
As for the tiredness, that was the stress caused from worrying about my pains and also I have an ongoing issue with ONJ. I have a small piece of jaw bone pertruding through my upper gum again and although I’m on the emergency list to be seen by the Consultant it’s been 4 months. All due to Covid and the back log of patients.
Oh well ladies, life goes on and we all have our troubles but we are here to tell the tale.
The photo is taking from our apartment window in Liverpool. Fabulous
So sorry that you are having a hard time at the moment, I’m sure it’s your time to catch a break soon! At least your test results are good- that must take some of the stress and worry away. Why do we have to wait so long to see anyone when we need help to keep strong? There is nothing worse than mouth pain!
Can you up your intake of vit D to combat the Omeprozole? I take Lansoprazole for acid reflux and they don’t seem to have many side effects.
The sunset from your window looks beautiful, sort of make you glad to be alive.
I hope you have a much better week next week and fingers crossed, you feel well and rested.
I love that we are all over the world supporting each other. I love seeing Liverpool because with all of this COVID nonsense, I fear I will never get to Europe again.
Bless you!
On the side effect note, the acid reflux thing is a real problem and I find it gets better with changes in diet. It's an experiment.
Hello Flower, Did you know that you can strengthen your bones with Ibandronic acid and take it as a daily tablet. This is an 'older' treatment..however I find it really good and assert that a small amount daily is easier for my body to process. (My bone mets are stable .) You need to take it 30 mins before any food (I do it first thing in the morning before I shower) My Onc. was a bit resistant at first, she wanted me to have injections, but is happy now that she sees it is working... I think it has slightly fewer jaw issues. Some people have stomach issues with tablets..so it may not work for you - I have had no stomach issues. You are doing well to stay positive. I told my nurse 'this is shite!" the other day as I got another injection in my butt.. sometimes I cant be my positive self... and that is how it is.
Sending positive thoughts from sunny Buckinghamshire.
I am on the same combination of drugs and feel your pain. Interesting info about Vit D destruction
Hi Cheryl
What a fantastic photo. I rarely get to see a sunset so thank you for that. Made me feel warm on a cold, windy day.
I’m glad you had all those tests when you went to the hospital, that was thorough of them.
Maybe a phone call to the secretary of the service you are waiting to be seen for the ONJ, just to let them know your situation and ask when services are opening up. Sometimes it can help to get an appointment. It’s also good to check they have received the referral.
I hope the chest pains subside so you can get on with more enjoyable things.
Good luck glad it's nothing to do with your heart, interesting about omeprazole affecting vitamins d. My onc gave me vit D to take now I'm on xeloda, my ribs on right hurt if I do a big yawn or a big sneeze. I hope you are ok sending love
I have been using Bromelain ( a pineapple derivative) for acid. I take one with meals and it has helped considerably. Go to a good health food store to purchase it.
There seems to be a few mentions of acid reflux and digestive issues. Is this linked to the condition, as that was my one of my main problems before diagnosis,together with back and leg pain. And I know someone else with same symptoms before diagnosis. For me it improved once the cancer levels in my bloods dropped with medication and I've phased out omeprazole , just being careful with diet and eating habits....well most of the time! Am interested as none of the medical people I've spoken to seem to think there's a connection.
My wife has similar issues and medication. The third week of Ibrance and the week off are awful for her even though her blood test results come back ok. She really crashed this last cycle (her 7th) and she is now on a two-week break from Ibrance. When we speak with her oncologist tomorrow we are going to see if a modified schedule might help her - I've read that two-weeks on / two-weeks off seems to help some people even though it is not supposed to be the way to take these tablets. Sorry the Denosumab has damaged your jaw bone. To counteract this and the Omeprazole side effects, my wife has been prescribed Adcal tablets - calcium tablets with Vitamin D added - something it might be worth asking about if you are not already on them. Best wishes from sunny Fleetwood.
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Thanks so much for your reply. I do take Adcal. Calcium +D3. Quite a high dosage. I hope your wife finds some relief in changing her dosage of meds. They are such powerful drugs. At the end of the day as much as we are grateful we are all Guinea Pigs and no two people are alike.
I was given a Denosumab injection a week after a tooth extraction. Apparently I should have been off the injections 6weeks before the extraction and 6weeks after. The Chemo nurse made a big mistake and was reprimanded. Not that it helped me. I told her I had an extraction but she went ahead. It’s 14 months since the extraction and I have a gaping hole in my gum with this piece of bone extruding. I’ve already had 5 small pieces of bone removed.
Keep in touch and it’s a beautiful day here in Liverpool so we are off to our allotment. We are on lockdown so the allotment is a nice place to escape to.
I'm sorry, Flowerfairies2, that sounds uncomfortable. I am on Evacal D3 for calcium and vitamin D. I don't know if you are on it. The calcium part of it is really similar to an over the counter medicine in the states called Tum's for settling the stomach acid. I am finding the Evacal similarly helps. But I did just read an article that suggests calcium citrate supplements are absorbed more easily than calcium carbonate so I wonder if it might do better for the stomach acid. I don't know if they come with a vit D supplement included or if that would have to be separate. Of course it could be that it has no affect at all on how well it works on stomach acid. I'm sorry you are in pain.
Oh, on the fatigue, there was a thread a couple of weeks ago on 125 vs 100 vs 75 MG of Ibrance/Palbociclib. I recall it talking about fatigue. I don't know it has some helpful info.
Have a lovely week. I'm spending a moment praying for you this morning. Beautiful photo. I love that the sun continues to rise and set and we sometimes get to see such beautiful colors in the morning sky (although I'm not a morning person so I prefer evening skies.)
Thank you so much Stac. I’m feeling much better now. Such an informative post. I take VitD3+ Calcium. Two one day and one the next. I wish I could have a face to face with my GP and Oncologist about these things but it’s all done by a rushed telephone call. Next time I go for treatment I will ask about the Calcium and Vitamins but on the positive side my blood count is always good. My calcium levels are on the high acceptable side. I will ask about Evacal. Will see what they come up with. With the NHS it’s all about cost but I will purchase over the counter alternatives if it helps my stomach.
Thanks so much for your input and glad you like the picture.
Best wishes
Cheryl
Hi Cheryl,
How are you feeling today? Hopefully you are seeing some improvement. I don't think you should just be expected to put up with pain when it comes. I would talk to your GP or oncologist about that and see if one of them can prescribe something to combat the pain when it comes, if it's not all the time. I also hope you can get an appointment soon to deal with the osteonecrosis.
Take care,
Sophie
Hi Sophie, good to hear from you. I spoke to the Cardiologist as you know and she said that acid reflux could be a contributing factor to the pain as well as the Mets as it’s not there all the time. I told her I take Omeprozole and she didn’t highlight on that at all so I assume it’s ok. I can’t take Gaviscon it makes me sick plus I think it’s a different med combination to Omeprozole.
My Dentist has phoned the Consultant three times and that’s what they come back with. I’m on the emergency list. Now we are on lockdown again so goodness knows how long it will be. I put Manuka Honey on the gum and that tends to sooth it but temporarily. What a state of affairs aye?
Today is another day and I do feel brighter and not so much pain thank goodness. The ladies on here are a wonderful comfort in time of need and I’m so grateful for their input.
Take care and keep in touch
Cheryl
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Hi Cheryl,
I have also heard that manuka honey can help, so hopefully it will with you too. I know what you mean about the pace of things taking so long, and now with new lockdown measures starting today who knows what will be next! I just hope it doesn't delay treatments and you can get the help and support you need soon. I've heard of omeprozole, as my dad used to take that. I don't know if he still does and if it helps much. I wonder if there is anything else that's natural other than the manuka honey that might help you with the acid reflux?
I'm glad that the pain seems under control today. It's so hard to function when you are in pain, isn't it?
Take care and enjoy the lovely weather!
Sophie
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Sophie a kind lady on here reminded me of Aloe Vera Juice. I used to take it years ago so will buy some ASAP from Holland and Barrett. It used to work for me.
My GP called today for a chat. Surprise!! She said the alternative to Omeprozole isn’t available anywhere at present. It’s imported and the name escapes me so,I will try the Aloe again.
I’ve taken Manuka Honey for 18months. My skin has been great and any mouth ulcers have been cured overnight by rubbing it on. I take the 300mg one. If my mouth is sore i rub it in and still have a spoonful a day. It tastes like caramel. Quite nice.
My pain seems controlled now. Mind you my chest bone was aching a bit today as we went to the allotment and everything needed lots of water. I do push myself I must say. My way of keeping fit.
What next? I went to Aldi today for milk and bread and it was so busy. Just hope it’s not panic buying setting in again. I rushed in, picked up a couple of things and got out as soon as I could. People got to close for my liking and there was no one to enforce distancing. I won’t be going again for a while. Just wanted to feel independent.
Will be in touch.
Best wishes
Cheryl
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Hi Cheryl,
I've heard of some people using aloe vera juice, but I'm not sure what it's for. Is it for digestive issues? Sorry to hear that the alternative to omeprazole isn't available. Have you looked on Amazon or eBay? I sometimes find that my supplements are cheaper on there. I get a discount for certain products (thanks to my integrative doctor) but even with a discount it is sometimes cheaper to get my supplements elsewhere. So I like to shop around. Some supplements have been cheaper to buy from America.
You have made my mouth water at the mention of manuka honey. I should try some! I was actually hunting around for some local honey recently, but couldn't find any. There's a farm shop nearby which sells a lot of local products like ketchup, fruit and vegetables, so I should probably stop by and see if they have some local honey too. Something else to add to my to-do list!
I envy you your allotment. I have my small vegetable garden that I am tending, and a few tomatoes are starting to grow. I just hope I manage to harvest a few before we get a frost.
Sorry to hear that Aldi was so busy. If you can go before the school run when they first open it might be quieter. I dread shopping when it's crowded too. My husband and I went to Sainsbury's yesterday afternoon and it was packed to the gills. I hope people are not panic buying now that restrictions are back in place again. I couldn't find any toilet paper, hand sanitiser or pasta for the longest time at the beginning of lockdown.
Anyway, I'd better make a move and make a start on my nighttime routine (bath and acupressure mat). I actually look forward to it!
Have a good night, and we'll talk again soon!
Sophie
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Aloe Vera is great for the digestive system. I had just forgotten about it. I also love anything ginger which is equally as good. I do look on eBay. It Amazon is the cheapest for all sorts. Especially Manuka Honey. Local honey is good for allergies as the Bees are collecting honey from your area. Manuka Honey is best from New Zealand and is only produced a certain time of year making it expensive. Worth it though.
It’s great growing your own fruit and veg although it does have its problems. Our tomatoes had a blight this year, so do others on their plots and a lot of cabbage had clubroot which stops their growth. We have had it 3 years now and stil l learning. Hubby is building a raised bed for me to plant flowers and lavender. So good for the bees. We have had a good crop of other things thank goodness. Maybe we should grow loo rolls and pasta ha ha.........watch out😛.
I won’t be going to the shops now for a while. We have enough freezer food and fresh veg from the allotment. It’s just bread and milk we run out of.
Keep in touch and talk soon.
Cheryl
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Hi Cheryl,
I will have to look into aloe vera. I take so many things! I keep a notebook with everything I take just to remind myself when I need to take the drugs and supplements. I am not so keen on ginger though. I had a ginger tea I was drinking a while ago and it was awful! It was such a relief when I finished the pack. It's better if I can add ginger to my cooking, as I know it's beneficial for cancer. But why does so much that is supposed to help fight cancer have to taste so bad?!
I don't have allergies, but I do like the idea of eating locally sourced products, such as honey. Sorry to hear about your tomatoes. I have noticed a few more tomatoes coming in. I hope they hurry up! Next time I will have to plant them earlier in the season. If you manage to grow toilet paper and pasta let me know and I'll be right over to your allotment to pick some!!
I don't blame you for not wanting to go shopping. I'm taking my dad shopping on Friday, but I also have a freezer (two actually!) full of food, and a fridge that is also packed.
I have the same problem with acid indigestion and take omeprozole, but I’ve found aloe Vera juice works really well. It tastes disgusting - think vinegar - and it takes a few days to be really effective but I find it as effective as omeprozole. I start by taking both(drug in morning and juice in evening) and gradually stop the omeprozole.
I had actually forgotten about Aloe Vera. I used,to take the juice years ago. I really will,buy some again and try it. Strangely enough my GP called today to see how I was. I haven’t spoken to her in months. She said there is an alternative to Omeprozole but there isn’t any available at present as it’s imported. Can’t remember the name. Thank you for answering. It’s been helpful
It has really been developed since then. Lot more high rise buildings, huge shopping centres and a beautifully developed waterfront. We did the Beatles Tour before we moved to Liverpool. It has to be done. All good today and hope you are ok
Greetings :): Sister/warrior. I am sorry to hear you are experiencing the effects of acid reflux . Please see a Dietician/Nutritionist who will give you a list of alkaline foods, beverages, herbs, and seasonings that will neutralize the acid in your body . Even bottled water that is not alkaline water is acidic.There are foods, and beverages that you would not believe are acidic.Years ago I had the worst acid reflux/GERD . Now with my alkaline diet change, I no longer have this issue thank GOD .
Thank you. We have a dietitian in our Cancer Day Centre. I could email her or Google it.
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. Please see a Dietician/Nutritionist who will give you a list of alkaline foods, beverages, herbs, and seasonings that will neutralize the acid in your body 
. Even bottled water that is not alkaline water is acidic.There are foods, and beverages that you would not believe are acidic.Years ago I had the worst acid reflux/GERD 
Denosumab and chest pain
Aches, pains on Ibrance + Letrozole
Ibrance/Letrozole Fail
Update: https://healthunlocked.com/share-metastatic-support/posts/144812485/ibrance-schedule-5-2-days.
