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Other little symptoms

Timtam56 profile image
41 Replies

This might sound strange.

Does anyone have any of these other symptoms on the mix of....

Ibrance and Letrozole and Denocimab?

1. I have really dry skin on the ends of my fingers and toes. Almost like calluses, but I’m not doing anything heavy with them like walking a lot or using my hands like I used to.

2. Pain in the oesophagus when swallowing now and again. Sometimes it can just be water. Other times a piece of toast or pasta or meat can make me feel like it’s a shard passing though that top of my chest, just below the throat area.

3. The different blooms of cancer in my bones, skull, thoracic spine, ribs and hips, all hurt differently at different times.

Thanks for reading.

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Timtam56 profile image
Timtam56
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41 Replies
nstonerocks profile image
nstonerocks

I am on Ibrance and faslodex. Was on letrozole until September. Can definitely empathize with symptom #2. It’s awful. I’ve had very dried and toughened skin on feet. Best thing I found was a lanolin with chamomile salve . Worked great. Also went for pedicure and they worked on my feel to exfoliate the skin. My feet looked like Sherk feet.

Gosh, Timtam, I've had none of the above. My skin is no more calloused than normal (as nstonerocks notes, a basic mani-pedi deals with it...) and no esophageal pain...perhaps that's some reflux or something? Re: things hurting at different time, I might optimistically choose to view that as healing of mets...it hurts! I'm so sorry for what you're experiencing...gosh, on top of everything else, the last thing we need is sort of secondary symptoms! I hope things improve for you... Best, Lynn

SusieIM profile image
SusieIM

Oh am sorry about those symptoms that your having. Did you tell your doctor. I told my doc about some symptoms I am having (some numbness around wrist/hip, some loss of bladder control, sometimes a tingling down my right leg). I am on Faslodex (3 months). I have compression fractures (5). I think I am recovered from the fractures. Doc is having a MRI done on spine this Wednesday. She said for a closer look. Hopefully things are ok.

GollyG profile image
GollyG

With you on the different met pains coming and going! I too tell myself it's healing x

Barbteeth profile image
Barbteeth in reply to GollyG

I’m intrigued

Why do you think the pains signify healing?.. I’ve not come across this

Barb xx

GollyG profile image
GollyG in reply to Barbteeth

Because, given I don't know the cause of the pains, I go for the best possible reason for the pain. It makes it much easier to live with.

Timtam56 profile image
Timtam56

Oh and...... my hair is falling out I clumps girls. Anyone else?

I may well find that after all the stress...... of looking after my partner as he nears death,.... I may find that a lot of this is due to stress.

mariootsi profile image
mariootsi in reply to Timtam56

Absolutely I think all is stress related!

Barbteeth profile image
Barbteeth

Hi

I have the dry skin on the ends of my fingers but only recently and I’ve been on same combo as you for about 11 months so it’s strange..anyway I don’t care as long as there’s no progression

All the best

Barb xc

Timtam56 profile image
Timtam56 in reply to Barbteeth

Yes definitely barb.

Purple60 profile image
Purple60

Yes I have all of these. I had them on Ibrance and I still have them off Ibrance and on chemo. I assume these are the effects of cancer with mets.....

Maludagui profile image
Maludagui

Good morning 🎀 yes...I have all of these. I am on 6 month Ibrance-letrozole-Faslodex-xgeva a month 😘🌺 but I win 😍💃🏽

Wolverine19 profile image
Wolverine19 in reply to Maludagui

Hi , just double-checking the info in your post. Are you saying that you are on ibrance, faslodex, letrozole, and xgeva all at the same time? I have never heard of anyone being on both faslodex and letrozole with ibrance at the same time. Usually it is either faslodex and ibrance or letrozole and ibrance. Please clarify.

Felish48 profile image
Felish48 in reply to Wolverine19

Me either, I was on Faslodex, but it didnt work for me. I'm currently taking Zoledex injections, Letrozole, Ibrance and Zometa

Timtam56 profile image
Timtam56

And anyone got hair falling out?

mariootsi profile image
mariootsi in reply to Timtam56

Yes. Hair thinning terribly!

Felish48 profile image
Felish48 in reply to Timtam56

Hair is in tact, just tangle alot more.

Thatflowerlady profile image
Thatflowerlady in reply to Timtam56

Yes thinning a lot , it started after 3 months on Ibrance

Red71 profile image
Red71 in reply to Timtam56

My hair thinned a lot for about 8 months so I gave up, got it cut short, dyed it back to the red it was, and bought a wig for “just in case”. Then my hair decided to stop falling out and started getting thicker instead. My 8 and 6 year old grandsons found the wig the other day. They look better in it than I did!

mariootsi profile image
mariootsi

So sorry. Hope things get better for you. You are going through too much!

Timtam56 profile image
Timtam56

Oh yes mariootsi. It’s a very hard time. But I have had hard in my life before, so I know I can do this. It will be so sad, and yet such a relief when he dies. And then I can just concentrate on myself.

I’m feeling little sprouts, buds of wings, pushing out of my shoulder blades. I see myself taking road trips. Relaxing. Sleeping better. And yes. Having moments of true grief. But hopefully I will get to have some good times before my health declines. I want to push myself to my limits while I can.

mariootsi profile image
mariootsi in reply to Timtam56

Push away!

Gwennie123 profile image
Gwennie123

I have a two and three. Especially the esophagus.

Timtam56 profile image
Timtam56 in reply to Gwennie123

Gwennie. Isn’t it awful? My doc seems to just shrug when I tell her these things. I’m sure she thinks I’m a hypochondriac.

Gwennie123 profile image
Gwennie123 in reply to Timtam56

Maybe the shrug means she doesn’t have any answers. She must know you’re not a hypochondriac. None of us are. All complaints have merit and basis.

❤️

Timtam56 profile image
Timtam56 in reply to Gwennie123

She told me last time, when I complained to her about shocking bowel pains, that I might be imagining the pain just because she mention that I have diverticulitis the time before, and that she resists telling her patients everything because sometimes the can make more of it.

This, while I’m trying to cope with my partner dying, and having terrible tummy cramps like colic pains..... all last month. They have gone away a bit now.

But I do feel she shrugs me off quite often. I guess a top researcher is not going to have the best bedside manner.

Felish48 profile image
Felish48

I've had the exact same chest pain that you are describing , in fact it awaken me out of my sleep this morning.

Timtam56 profile image
Timtam56 in reply to Felish48

I’m sorry you have it too. But it’s nice I’m not alone.

Felish48 profile image
Felish48 in reply to Timtam56

You are certainly not alone honey...I pray that we feel better...

Gwennie123 profile image
Gwennie123

And terrible reflux. I can choke on a sip of water

Timtam56 profile image
Timtam56 in reply to Gwennie123

Yep.

SeattleMom profile image
SeattleMom

Hello, Timtam!

Out of curiosity, did your initial treatment include radiation?

I had radiation treatments to my spine which ended up leaving me with esophagitis, (the esophagus was an innocent bystander.) I had extreme difficulty with swallowing after the radiation was completed (even difficulty swallowing my spit!) This resolved itself after about two weeks.

I do, however, notice rare instances where my esophagus seems to tighten up when eating or drinking. I'm guessing this is part of the leftover damage. God bless and heal you! XXOO Linda

Timtam56 profile image
Timtam56 in reply to SeattleMom

Ohhhhh. Seattlemom.

I wish I had written a journal from the beginning. It’s so interesting you ask this. I did end up having radiation. About 5 months after beginning the letrazole and ibrance, but interestingly, (cause all the medicos at the hospital ask3d me this afterwards,) the pain in My oesophagus had started to some degree one month before I had radiation.

I remember, because we went away for the wined the moth prior, and I told him that I had the strangest sensation in my oesophagus. But certainly after radiation it got a lot worse. And absolutely the same as you. Trouble swallowing a gentle amount of saliva. I remember emphasising this.

I must say here. None of my medicos seemed to care much. It’s not like they were rude. Just complacent. I was most upset with the girl who did my radiology. A young girl who always sort of rushed me. Like I should walk at her pace. And when I told her during the week of radiation about this feeling like there’s a tennis ball in my oesophagus, that anything I swallow has to pass through, she said to me..... “it wouldn’t be the radiation doing that!”

SeattleMom profile image
SeattleMom in reply to Timtam56

WOW!! So interesting how some radiology staff have no idea of the ramifications of radiation to other areas of the body; most of it impossible to protect. Certainly doesn't sound as if she was qualified to tell you that the radiation would not be responsible! Hope you're feeling better! XO Linda

Gwennie123 profile image
Gwennie123 in reply to SeattleMom

I had radiation 11 years ago. Breast

SeattleMom profile image
SeattleMom in reply to Gwennie123

Hi, Gwennie! Since my mets went primarily to my spine, the rads were, of course, focused there, with some unintentionally hitting my esophagus. Most often, I would imagine it's difficult to completely prevent damage to other, unintended targets. XO Linda

Timtam56 profile image
Timtam56 in reply to SeattleMom

Same for me. Only radiation for spine and hips.

Sunnydaz profile image
Sunnydaz

My skin is dry everywhere. My lips peel, I use Burts Bees chap stick constantly and coconut oil everywhere else.

laurac1014 profile image
laurac1014

I had Gastritis show up on my PET scan. It had got so bad, a couple of times after having my favorite tacos 🌮 it felt like I was having a heart attack. I started taking Zantac ever day but now I am trying every other day. My onc seemed ok with this. Life is bearable again !

Thatflowerlady profile image
Thatflowerlady

I am on ibrance , faslodex injections & Xgeva injections.

I have the pain that moves around from the main 4 spots , there doesn’t seem to be any reason for the changes of location . ????

I also get a sinus pressure and nose drip that start about day 7 of the pill cycle , I was told it would be caused by the depleting hairs in my nose ???? my hair after 5 months of treatment is really starting to thin out ☹️ . But so far it seems to be working and the side effects are tolerable . I was on Letrozole previously and i was not handling it well at all . I could hardly bend my legs and my hips ached , doing stairs was awful even bending over almost impossible . 3-4 days off the letrozole and I could move again .

I am able to now take a couple extra strength Tylenol for pain occasionally .

My skin also feels dry and when cold my finger tips turn white and then go blue .i have mentioned to my oncologist and they don’t seem overly concerned .

So I carry on

Red71 profile image
Red71

I had radiation to mets and have trouble swallowing some days. Certain foods...meats, and dry breads. My esophagus just doesn’t let food go down as easily and I have to be sure to chew things really well.

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