Everolimus and clots

Hi ladies, been so shattered last few days but I have news. No clots in the lungs or arm….phew. Not quite sure what this means but I’m sure Sandra and Clare will. reading for possible blood clots was 1000 and should have been lower than 900. It has now dropped thank goodness. So, my Oncologist has informed me the Cancer can give this reading also. My Palpitations and raised blood pressure was more likely to be anxiety. My CT and Ultrasound gave good results. The mets in my lungs have shrunk even more. I was so relieved.

So, now I have to go to the Lymphodema Clinic as this may be causing the swelling in my arm and ankles. I also have to have a scan of my heart. I have another ECG booked for the last week in October.

I am back on my medication now. Everything crossed I’m ok with it as it apparently wasn’t causing me the problems. Mmmmm……..

I also had a dental appointment Wednesday and after months and months of pain and root canal treatment it’s been decided by the Max/Facial Consultant the tooth has to be extracted. I must say the Dental Hospital have done everything they can to save the tooth but I keep getting infections. So, another month without Denosumab and keeping everything crossed on this one. I just do not want to go through the Osteonecrosis saga again.

So, still not a closed door but hoping things will settle and that my Popeye arm and swollen ankles can get sorted.

Have a good weekend everyone.

Cheryl

💗🌹🌲

[Hidden]

So very glad to hear you are ok Cheryl, and what great news about your lung mets.Strange how all these symptoms started with the start of your new meds, but it could be coincidence.

Deffo lymphoedema or heart then causing the swelling rather than a clot. They are different fluids under the skin but have the same symptoms. My knowledge is a bit basic and I am sure Sandra will give you more info. I will say though that lymphoedema can be caused by exzema and you had that dermatitis thingy on your leg didn’t you? You also had an altered reading on your ecg if I remember rightly. So sorry no help at all as could be one or the other or both those things.

At least they are getting to the bottom of things.

Take care flower

Clare x

[Hidden in reply to Hidden]

Thanks for the info Clare. I will see a Dermatologist soon I hope. My GP has good connections with one although they diagnosed it incorrectly. That’s because it’s all done by photos and not face to face. I have had so many injections I’m like a pin cushion. I feel completely out of sorts. It’s a pity as I was ok on the old concoction but I know it had to change. My next step is heart checkup. My cholesterol is slightly raised but the Oncologist wasn’t to bothered. He said I will leave that for the GP to deal with. Again, this new treatment can affect the levels.

Interesting regarding the Lymphedema causes. I really didn’t know that.

We are off to the allotment tomorrow. We just haven’t been. Was so many trips to the hospital last week. All in the past now. Have to look forward and plant some Brussels 😃🤔.

Have a good weekend and I will be in touch.

Cheryl 🥰🐝🐞🌲🍏

[Hidden in reply to Hidden]

All those injections bless you. The allotment will cheer you up, and it’s so warm outside still. I love Brussels sprouts, I eat them raw.Clare x

[Sunnydrinking]

Hi Cheryl

Sounds like some good news at last for you.

Sorry to hear you’ve been feeling so shattered. Hopefully you can relax a little more now.

I’m pleased you are back on your treatment.

I’m sure you will stay on top of things.

I’m tolerating weekly IV Epirubicin well with minimal SEs. Although every Friday in a busy chemo suite with lots of delays is challenging!

I’m due a scan in a few weeks - let’s hope it’s working well 🤞 my last 3 treatment lines have shown liver progression …. But I remain positive!

Very best wishes & please keep us updated.

Jo xx

[Hidden in reply to Sunnydrinking]

Hope all goes well Jo. I know the feeling when it comes to waiting. To add to my long list of appointments I’m having a tooth extraction Thursday. We are so grateful for our medical care but waiting times are frustrating.Update us soon.

Best wishes

Cheryl.

[Beryl71]

Good luck with everything. And good to hear of progress. I have a very good lymphoedema specialist and no longer wear a sleeve as he has done such good things with my arm. He also helped a friend who had throat cancer and she is now back to normal too. So I hope you can find a good therapist. It makes me feel normal and that's such a good start! X

[Hidden in reply to Beryl71]

I’m so pleased it worked for you. Fingers crossed I get an appointment through soon.Take care

Cheryl

[8576]

Congrats on the good news and getting through this trying time. They will get to the bottom of this problem. Sometimes it is ruling out things as you know. Sounds like you are able to breath better now.

I just want to say, I love your name. Two of the things I love. Flowers and Fairies.

I had no idea you planted Brussels in Fall but I guess your winter is milder and you can harvest all year. It will be nice to get out to your allotment. Is it far away?

Cheers, June S.

[Hidden in reply to 8576]

Thanks June. Our allotment is a 10minute drive away. Not far at all. We have been today and it poured with rain. Just a quick visit. We sow seed for Brussels. It’s for next seasons crop. We have also planted winter cabbage. There is several seeds we can sow but have been pre occupied with appointments etc. We will get there.

The name came from 7” dolls I restore. They were made in 1983 and called Flower Fairies. They are so sweet. I sell them on. I love little fairies and adore plants and flowers.

Takes care

Cheryl

[PJBinMI]

That sounds like a lot of good news to me, and I sure understand how anxious having so many lousy possibilities can be! I don't know if this is still standard protocol but it used to be recommended that we be off our bone med for 3 months before and 3 months after any needed invasive dental work. And of course that isn't always possible when our mouths need care sooner than that. For many of us with bone mets, skipping the bone meds is not a big deal, especially if we've had a number of months with t he treatment. A friend of mine who had ONJ and kept getting mouth infections was told by her very specialized dental surgeon to use these two products daily: Arm and Hammer Peroxicare Toothpaste and original flavor Listerine. Those solved her infections. Don't know if that would help all of us but I wanted to mention it to you. I hope you will get more good news in the months to come.

[Hidden in reply to PJBinMI]

Thanks for replying. I use Duraphat toothpaste that is prescribed by my dentist and Corsodyl mouthwash. I also use Manuka honey on any ulcers I have. The ONJ I have is a nuisance but I’m used to it now. I just hope by having this extraction done by a Surgeon it will be done properly. Unlike last time I had an inexperienced Dentist.My Oncologist recommends 6weeks off Denosumab before extraction and six weeks after. The dental hospital recommend no break at all as it doesn’t make any difference as the Denosumab is in our systems for 10years approx. They do contradict each other but I will go with the advice of my Oncologist. Think it’s all toss of a coin really. I do also have Arm and Hammer toothpaste. Our dental care is so important and I’m so annoyed my teeth have deteriorated since being diagnosed.

Will update after Thursday.

Best wishes

Cheryl

[mariootsi]

Cheryl, so glad you have such good news. I am going to lymphatic massage and it is relaxing and really helps!I wish you well with your ekg and your other tests.

[Hidden in reply to mariootsi]

Thank you lovely. I still haven’t heard when my appointment will be but I have a retired Staff Nurse friend who knows a McMillan Nurse who deals with Lymphodema. If I have to wait to long I shall give her a call to see if she can help. It’s such an uncomfortable feeling but I know many ladies suffer from it.Take care

Cheryl

[mariootsi in reply to Hidden]

Oh I'm so glad you found someone in case your appointment is a long way off. The sooner the better. I wish I could have started sooner!

[Nocillo]

I hope it all gets sorted as well. It’s a lot to deal with. Best wishes for you!

[Hidden in reply to Nocillo]

Thank you.

[Hidden]

Hi Sandra,My Oncologist did say the next tests will complete the investigations I have had. I’m glad of that. Haven’t had an appointment through yet for any of it but then again it takes a few days for letters to come out.

Tooth extraction Thursday. That was decided by the Maxo Clinic today. They have treated it as urgent as the root canal treatment has failed and my gum keeps getting infected. Oh well, another thing to add to my list.

Thanks for the information. What do you think of Chiropractioners. I’ve been offered some treatment (privately) but I’m not sure it will do my bones any good.

Best wishes

Cheryl

[Kellyonekanobe in reply to Hidden]

I love my chiropractor but she does only non-force adjustments which are quite helpful. I have stage 4 MBC with Mets to bones and liver. Where do you go to the Mayo Clinic? How do you like them? I have an appointment with the Jacksonville, FL location on November 1st. Are you on Xgevia? Do you think that caused the problem with your teeth?Wishing you the best. Sending love and prayers, Sandy

[Hidden in reply to Kellyonekanobe]

Hi Sandy, I think the Denosumab injections once a month have caused the dental problems.I live in the UK so am unfamiliar with where you go. Thanks anyway and best wishes

Cheryl

[Hidden]

Oh I have extensive bone mets to Sandra. I wouldn’t have a massage offered at our Cancer Centre so I was sure about the Chiropractic. I will avoid it big time. I have fractures, one on the left side and two on the right. That’s enough. Will let you know about the extraction. 🛠🩺

[Missmaddie615]

You have so much on your plate right now, but so happy to hear you are getting some good news! Good luck with your tooth extraction on Thursday -that should be one issue that you can mark off your list! God bless you!❤️

[Hidden]

Thank you so much xx🙏🏼🌹