Happy Festivities everyone. - SHARE Metastatic ...

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Happy Festivities everyone.

42 Replies

It has been an awful couple of weeks. The side effects from the drugs have knocked me for six. I have lost 23lbs in two months. My food tastes awful, I’ve lost my appetite, I have shaking fits all over my body, headaches, nose bleeds and so it goes on. I’m so pleased with my stable results but I’m not happy with the new medication.

I really hope you all have a good time and sending very best wishes for 2022.

Some Amaryllis my stepdaughter gave me as my Christmas bouquet. They are beautiful.

42 Replies
debbiedo2063 profile image
debbiedo2063

Beautiful flowers. I’m sorry you are having awful side effects, it’s awful we have to pay such a high price for trying to live a “ normal “ life.You sound a positive person and I hope the side effects subside very soon.

Hugs and love at Christmas

Debra xxx😍

Joannaaaa profile image
Joannaaaa

Sending best wishes to you, I hope you get some relief and that you get to enjoy Christmas, love and hugs from Ireland x

doomkiller profile image
doomkiller

Hi Brave LadyI applaud you for your fighting spirit. So sorry you had to go through such an ordeal. I'm hanging in there myself. Remember, there are many of us fighting this battle. Stay strong. May you have a lovely Christmas. A warm hug from me in Newcastle, UK.

Chewie

in reply to doomkiller

Have a lovely Christmas Chewie. From Liverpool

MaryCos profile image
MaryCos

I am sorry the side effects are so difficult for you. Thinking of you and sending you positive vibes during this holiday season. Oh, and, since others are mentioning their location... my virtual hug is coming from the Washington, DC area (USA).

Cos

Nocillo profile image
Nocillo in reply to MaryCos

Did you find a job?

MaryCos profile image
MaryCos in reply to Nocillo

I STILL have not heard back from the group where I went through 5 damn interviews (including a presentation to the Board). That was more than two months ago. So, needless to say, I would never consider accepting an Executive Director position with a non-profit that is this dysfunctional. (And I don't even like them anymore!) That said, I have my eye on a few other things. One that REALLY excites me. Fortunately, I have been able to line up some consulting work, and that has kept me afloat financially. Hoping 2022 is "my year." 😘

Nocillo profile image
Nocillo in reply to MaryCos

So rude of them! I’ll never understand why it is so difficult to make a simple phone call. My son-in-law recently went through the same thing. I’m glad you found some consulting work and, yes, hopefully 2022 will be your year!

MaryCos profile image
MaryCos in reply to Nocillo

To clarify, I don't think they hired someone else. (No indication on social media or their website, and I was told repeatedly that I was their top candidate.) I think they haven't been able to make a decision. So, there is rude... and there is incompetent/dysfunctional. I was SO high on them. But, no more. Pretty pathetic. A hiring process involving 5 separate interviews should have tipped me off. That is excessive and unreasonable. Anyway, there are two things that I am interested in right now. One I already applied for. The other is a cancer organization focused on early stage (detection) for younger women, i.e., those who don't yet get mammograms. Of the two, I am still most excited about the first one, which is a great program that provides furniture/furnishings to folks who are getting back into housing after becoming homeless... and where they would basically be living in an empty apartment or home without even a bed to sleep on. Hope I hear back from them. They are doing everything right. And I would be their first paid CEO. The founder is a dynamo. I don't typically want to work with a founder, since there is often a lot of ego involved (meaning, they make the mission all about them)... but this gal is different.

Nocillo profile image
Nocillo in reply to MaryCos

Fingers crossed!

MaryCos profile image
MaryCos in reply to Nocillo

Thanks, friend. 😊 With the one I mentioned with furnishings, it is a bigger deal that I made it sound. They basically transform an empty house into a warm and inviting home. Kinda like that show where they said... "Move that bus!" And they go the extra mile to help individuals and families with needs beyond this. Really transformative and... heart-centered. xo

stardust1965 profile image
stardust1965

Hi Cheryl

Well that all sucks! I really feel for you, but the upside is that you are stable. 👏 Can you have a dose reduction of your meds?

I’ve got most of the same symptoms atm on the highest dose of E&E, but not the shivers. I’ve lost about 7lbs recently. I’ve got another seven before a new wardrobe will be needed and another 3lbs before I start to worry! I never realised how much I enjoyed food until I couldn’t. It’s so easy to lose weight on a cardboard and metallic tasting diet. My nails were bad on Ibrance but are now so much worse. I’ve got plasters on some of them to stop them from catching on everything- they really hurt.

My markers shot up at my last appointment but I read here yesterday about how the Covid jab might impact markers so I remain hopeful until my next appointment in early January. I will be having a PET scan the day before as my hip and femur issues are still lingering.

Have you spoken to your oncologist about the symptoms? The dose reduction might be the answer. I don’t want to worry you but could the shivers be a sign of an infection? Speak to your BC nurse if you can’t contact your onc.

Beautiful flowers. 🌺🤗

in reply to stardust1965

Hi lovely. At last I’ve put my mind to answering some lovely ladies. Apologies to those I haven’t answered. I’ve been in a horrible place this last two weeks. With a wight loss now nearly 24lbs. My GP and Cancer nurse have been brilliant and got on my case straight away. My fault I didn’t contact anyone sooner but I had a fear of being hospitalised. With Covid the way it’s rampaging it was a no go. Anyway, I have been for blood tests today. The full works. Results are Friday. My GP feels I have had a really bad stomach bug that has taken everything out of me. I also have a water infection which is awful. This awful alien inside me may have caused diabetes (I have the symptoms now), it could be Thyroid or maybe none of those. Results will tell all. It’s six months since I started Everolimus and Exemestane. I had the nasty side affects but to be honest nothing like this. I can’t say it is the meds.

I can’t see my Oncologist till 14th Jan. I’m pleased my GP and nurse are doing everything they can right now.

My nails are awful to but I feel they are the least of my worries. They are cut really short now but they still flake. It’s awful you have to wear plasters.

I’m gradually finding food that tastes reasonable. That’s not easy though. I’m never hungry now. My lovely husband does all the cooking and seems to know what May tickle my taste buds. 8 times out of 10 it’s right. I have a child’s plate and even then can’t finish it. If he dishes me up to much it makes me feel sick. I love Assam tea and it’s tasted of nothing since the new meds. Tonight I had a weak cup of Assam with very little milk and it was actually nice. I’ve been drinking fruit teas. They taste fine.

I have dropped two dress sizes. Can’t say I’m thrilled as now the wrinkles are showing. We have a cruise booked for end of next May and I was so excited I bought lots of new clothes ready. They swim on me now. Never mind, things could change. You really don’t want to lose to much as your strength will go with it.

Take great care and have a wonderful Christmas. I will update when I hear more.

Cheryl

Eliactida1955 profile image
Eliactida1955

So sorry-you are a strong woman but those side effects-awful -what meds are you on again? I talked to my dr yesterday and told him these meds are making me non functional with pain Metallica taste in mouth-making my Diabetes high . I feel fuzzy with nausea. My dr gave me a few days off then start affinitor at lower dose. My onc said well chemo is next or hospice and I told him no there are other meds so up to you to find them. My god I was on Ibrance for three years and now just a month with affinitor and aromasin. My platelets are 105 and pulse 43-48 most time and he’s not worried. We will see and most likely I will have onc three -one being M D Anderson. By the way my progression is very little and is not in my organs!🙏✝️

In the vernacular - this stinks. I am so sorry. It's lousy that the medicine causes miserable side effects. I hope you can find relief.

Thank you for sharing the beautiful flowers. With all you are enduring, it is very gracious of you.

NPmary profile image
NPmary

That sucks! I'm so sorry.

AvidBooklover profile image
AvidBooklover

Stunning flowers! I gift dozens of them here as bulbs and have kept 7 for myself. I never have seen them cut. So sorry that you are feeling so badly! May they be able to do something to quell your symptoms!

Carol from NJ

Sunnydrinking profile image
Sunnydrinking

Hi

The flowers look stunning!

I’m so sorry to hear you are suffering such awful side effects.

Cancer & its treatment can be so cruel…..

Perhaps your oncologist and/or hospital pharmacy can suggest something to help with your SEs.

I hope you still manage to enjoy Christmas.

Very best wishes.

Jo xx 🎄❤️

483724667 profile image
483724667

so sorry for your awful side effects...l hope you soon get some relief as already suggested a lower dose ?maybe...thank you for sharing the lovely flowers...your a very brave and strong person...l have also lost alot of weight it does worry me ...well l hope you manage to have a good Christmas and may the New Year see you feeling much better..sending hugs ..God bless you xx

Nocillo profile image
Nocillo

Sorry to hear of your troubles but wishing you a wonderful holiday!

Beryl71 profile image
Beryl71

I'm so sorry, which drugs are you on? I hope you can enjoy some Christmas treats. X

8576 profile image
8576

So sorry, Wishing you well over the holidays. The flowers are beutilful.

Cheers, June S

jersey-jazz profile image
jersey-jazz

Dear Flower Fairy------I am so sorry that you are having such a terrible time of it. Feelings if I know a little of what you are about, you willl put a smile on your face and cheer everyone up that is about you. Merry Christmas!

love2golfwell profile image
love2golfwell

Your flowers are lovely. I am so very sorry to hear about all of the side effects of your medication. They sound dreadful. I am glad that you are stable and am also wondering if you could have a lower dose and still be stable. Maybe you can get some insights from your doctor to help alleviate some of these effects. In the meantime, I will keep you in my thoughts and prayers as I do all of the women on this site. I hope for a Merry Christmas for you and your family and a Happy New Year. Sending you some hugs from Naples, Florida.

Thatflowerlady profile image
Thatflowerlady

I am so sorry to hear of the side effects you are having it sounds very unpleasant . I hope your medical team can come up with some solutions or changes to your medications to give you an even better quality of life. We all tolerate the drugs / treatments so differently. I am presently taking Exemestane but have not noticed any side effects that I have not been able to managed eg. Imodium is my new friend . I have found the herceptin & perjeta fairly easy to tolerate and again Imodium is my friend . Please talk to your team to help find solutions YOU deserve it .

Your amaryllises are gorgeous !

I am in my happy place right now surrounded with flowers and teaching a few classes. Flowers make everything better .

Luann

Christmas florals
in reply to Thatflowerlady

Luann the flowers are gorgeous. You are so talented. Yes, the GP and. Cancer Nurse are on the case. I’ve been for bloods tests today. Results on Friday. I’m so very weak and tired. Never thought of Imodium although that side of things has settled down now.It’s wonderful when you can be in your happy place. Sending love and hugs. Enjoy the festive period.

Cheryl

Dragonfly2 profile image
Dragonfly2

Hello! Those flowers certainly are lovely…very healing to see this kind of natural beauty. So sorry to read you are struggling with the meds…hope this subsides if you can have the dosage tweaked and your body acclimates. Sending you Christmas wishes and prayers.

Aquadog profile image
Aquadog

Ugh, I'm so sorry you're dealing with all that and I hope you are able to sort out the side effects quickly - they sound awful. Have you reached out for palliative care? Hopefully, you can get some relief so you can relax and enjoy the season.

The amaryllis is beautiful. Your stepdaughter must be a sweetie.

Sending warm hugs and wishes for a holiday season with tolerable side effects,

Susan

WhippetX2 profile image
WhippetX2

Congrats on your stable results but I’m so sorry you have the side effects to deal with. You sound incredibly strong and hopefully you have a good support system. Sending you strength and comfort during the holidays.

mariootsi profile image
mariootsi

The flowers are so beautiful! So sorry to hear you aren't feeling well. What are you taking? I take Remeron for appetite as I have no appetite without it. You may want to call your onc. She may be able to help you with your horrible side effects! I will pray that she can. Hugs, Marianne.

mariootsi profile image
mariootsi in reply to mariootsi

A palliative care doc can help also!

in reply to mariootsi

Hi lovely. My GP and Cancer Nurse are on the case now. I have lost even more weight. I went for full bloods today and results are due back Friday apart from one that takes 10 days. I expect I will be given drinks with all the nutrients etc in. They feel I may have had a really bad stomach bug that has depleted me of everything, Thyroid trouble or who knows. I can’t see my Oncologist till 14th. Covid has really taken its toll here on so many medical staff. I was fortunate to get the bloods drawn today.Sending you very best wishes for the holiday season and I’m glad you like the flowers. Thank you. Cheryl

mariootsi profile image
mariootsi in reply to

I wish you all the best Cheryl. Hope they figure everything out!

lynnhbtb profile image
lynnhbtb

I'm glad you are stable. That's a win for us. I wonder if you've considered reducing the dosage, at least for a bit, to get these side effects under control. Quality of life is something and just my 2-cents. Not raining on your parade and great news! The flowers are lovely.

Cheryl you always post such exotic looking flowers. Beautiful.I wondered why you had been so quiet. Well that is awful that you are suffering so much. It’s amazing what we put up with to fight this. I really am sorry you have been feeling so bad. You are always so sunny and see the good side of everything. I a. Sure you haven’t felt like it recently.

I hope you can enjoy the beauty of your flowers and the lovely view of the Christmas lights.

Take care my friend

Clare x

Teddielottie profile image
Teddielottie

Love your Christmas flowers Cheryl ! ... last Christmas I went out and bought my first Christmas cactus after seeing yours on here ...and are now flowering again ! Glad that you are ‘stable’ , but sorry about the awful side effects ...I hope you can get some help for them . Take care ! x

Nature613 profile image
Nature613

Dear Flowerfairies2, I hope you’re feeling better today. Not feeling well really does suck. Thank you for posting the pretty flowers and that cool lamp. Sending best wishes to you.

SusieIM profile image
SusieIM

wow sorry to hear you have been going thru alot, hopefully it will ease up soon. Prayers and hugs to you.

mudakurag profile image
mudakurag

Sending many positive celebratory vibes to banish those side effects and bring peace and healing.Mary

How amazing is that. It looks so pretty.So pleased you found it. Xx

Sunnydrinking profile image
Sunnydrinking

Hi Cheryl

Just to say ..

I’ve been thinking of you & hope things have improved for you. I’m sending you a sprinkling of fairy dust with love 🧚‍♀️🥰

Very best wishes

Jo xx

in reply to Sunnydrinking

So kind Jo. Thank you. I see the Oncologist Friday but the two week drug holiday has really made me feel better. Had bloods done today and collect treatment tomorrow……hopefully. I really hope you are ok. Take care. Cheryl

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