Can Letrozole account for shimmers all over my body?

[jersey-jazz]

As a woman relatively new to MBS to the liver, I have a lot of questions. I will begin with this most pressing one. Could Letrozole account for shimmers/trembling/feeling of electricity surging throughout my body, mostly in my legs but perhaps in concert with my heart pumping?

The answers I have got from both GP and oncologist are not satisfactory. The GP said at first, that it was a result of the chemotherapy. The. Oncologist said that was untrue because I had the chemo five years ago. She offered no reason but suggested that since my heart has been affected, that I visit a cardiologist. She also said that it might be my nerves. My GP, upon reading the oncologist's notes, has supported that idea and has prescribed the herbs, Skullcap and Oat.

I began with Skullcap and there was no lessening. So, I stopped.

Please help if you can.

Thank you

[MacroMom]

I also have liver mets and was on Letrozole for the first 14 months after being diagnosed in Oct 2017. I didn't have the shimmers you describe, but it did work well on the liver mets.

Do you feel the trembling constantly or does it come and go? Can you track it to certain times of day or night? Because Letrozole blocks estrogen so effectively, I wonder if your body is responding to that decrease and this is a menopausal-type symptom. If you have any concerns about your heart though I think it's important to get that checked out, for peace of mind at least.

This is a good place to ask questions, share your experiences or just vent. Hope you find it helpful!

Patty

[jersey-jazz in reply to MacroMom]

Thank you, MacroMom for answering. This was my first entry and yours was the first reply. It feels really good to be with all of you.

XXX OOO

[Chico64 in reply to jersey-jazz]

Thanks. I've thinking I was crazy because I didn't know what was going on with Me..thanks

[jersey-jazz in reply to Chico64]

Dear Chico

Please tell me more about your situation. Are you too experiencing shivers/murmurs/electrical sensations/shimmering/tingling,etc?

For your sake, I hope not. Still, please tell me.

[Hidden]

Does it feel like pins and needles or little zaps? That can be nerve related, neuropathy. Are you only taking Letrozole? Many drugs can cause as can chemo as they ask me about it every month. With chemo they said I could have it a week and it could go away or it can become permanent. I would definitely ask you doctors a out this. They should have thought of neuropathy. Keep at them.

[jersey-jazz in reply to Hidden]

Thank you for your comments.

I think that that was where the GP was going. I have neuropathy in my toes and sometimes in my feet. I don't know whether to go to a nerve or a heart doctor.

Yes, Letrozole is the only drug I am taking. My oncologist wanted me to begin it in 2015 but I only began it on December 27 2019, when I knew, before the liver biopsy, that it had metastasized. I had an MRI recently and the lesion appears to have shrunk to a minimal size. The oncologist wants me to have my third PET/CT scan in less than a year. I am hoping to convince her that since no treatment would be changed if the results showed more cancers, that I shouldn't have it so soon.

However, that is another of the many questions/concerns I have and you are not obliged to answer but are welcome to.

Thank you, again.

XXX OOO

[Hidden in reply to jersey-jazz]

Are you having chemo or is letrozole the only treatment. Many of the ladies in here, including me have ct scans every three months as that is what most oncologist go by as to how our cancer is doing. Some use tumor markers but the ct scan is the go to test. I have only had one Pet Scan and that was in the very beginning. I have a bone scan every 6 months as my mets are all to bones.

I know it can feel overwhelming to have all these scans in one year but it really is the only way to see what is happening. I go with what my oncologist suggests but it all comes down to what you personally want to do. A lot of tough decisions forced on us. Good luck.

[jersey-jazz in reply to Hidden]

Dear Sarcie

The chemo and targeted therapy was not recently. Yes, I only take the Letrozole.

I am very concerned by all the many radiation scans and x-rays I have had very recently but maybe I'll stop being so belligerent and will do what my good oncologist wants me to do.

Thank you for responding to me. This website feels like a warm blanket. It is lovely!

XXX OOO

[Hidden in reply to jersey-jazz]

This is an amazing group of people ❤️

[Annadm in reply to Hidden]

Yes I had the palpitating heart. I was prescribed a beta blocker, Bisoprolol 2.5 mg/ day and I don’t get those feelings anymore

[Beryl71 in reply to jersey-jazz]

I read that in the scale of things these scans aren't a problem in terms of radiation, compared with what happens in our daily lives. And it all seems pretty well controlled.

My oncologist doesn't believe in overscanning, but apparently goes by how you look and feel and the blood tests. Suits me. I don't want to focus these valuable days of my life being investigated and visiting hospitals. The nurse told me they try to provide quality of life so you can enjoy It! Sounds like a good plan.

[TwithBC]

Hi. Not sure about your specific symptoms — but I can say from my experience of letrozole for three years that I have as a plethora of odd (sometimes seemingly alarming only To find it passes or a scan shows nothing scary) symptoms . I have not had chemo and have only been on letrozole for my three years stage 4 dx. Strange sensations in my body—I’m now used to them. As I said, sometimes I have been certain that cancer was ravishing my body from the strange muscle or nerve reactions I have had—but I’m NED (No evidence of disease) for 2.5 years so far.

Best best best to you on this journey!

Tracy

[Annadm in reply to TwithBC]

Hi Tracy, and it had metastasized where?

[TwithBC in reply to Annadm]

Smurf1212 — I have a scan in a few days, so far it’s in my bones only.

[Annadm in reply to TwithBC]

Good luck and keep us posted 🙏❤️

[Hidden]

Hi, I’m on Letrozole and Ibrance. I sometimes get the shakes in the morning when I wake but they soon pass. I also get irritation around my ankles and skull since taking the meds. I read that this can happen. Hope this little piece of info helps.

Best wishes

[jersey-jazz in reply to Hidden]

Dear Flowerfairies2

I love your chosen moniker. Was there a Flowerfairies1?

It is interesting that you also have crazy stuff going on with Letrozole. May I ask why you are taking Ibrance as well as Letrozole? My doctor wanted me to take it alongside Letrozole but I suggested that I wait and she went along with it.

Thank you for responding. I am getting the feeling of finally having a soft landing.

XXXOOO

[Hidden in reply to jersey-jazz]

Hi, yes there was a Flowerfairies1. I buy and sell vintage Flower Fairie dolls. They are 7” from top to toe. They were made by Hornby. I also refurbish them with new hair and repair their clothes if needed. Cute little things made in the 80’s. There is a market for them. Mums that had them as a child and now want them for their little girls. Keeps me busy.

Ibrance is the Cancer Blocker. Letrozole is the Oestrogen blocker. Some class it as a form of Chemotherapy. I take it for 3 weeks on and 1 week off. You probably don’t need to take it. I’m sure your Oncologist /Consultant would prescribe it if needed.

There’s so many side effects from these drugs. I think we just have to take each day at a time.

Best wishes

Cheryl

[Chico64 in reply to Hidden]

Yes, So glad to have a platform to come to for learning..I would like to pass on my diet..I use ginger tea, and make a drink with baking soda both help fight cancer..

[Hidden in reply to Chico64]

What is your tea recipe?

[Annadm in reply to Hidden]

How long have you been on this combo? Thanks

[Hidden in reply to Annadm]

It’s been 16 months now .

[BluHydrangea]

Welcome Jersey-Jazz! I’m on different treatment than you are now. Wanted to say hi! Best wishes for resolution to these symptoms.

[Beryl71]

I'm on letrozole and Ibrance, third month in. No shimmers but occasional tingling in finger tips. I feel more calm and relaxed since being on treatment than I have for ages. Probably because at last I know what's wrong now and that I'm being treated for it.

Good luck.

[Biddy007]

I get those feelings. I am on on letrozole and palbociclib. It's like an internal shiver but is in my lymph nodes. A friend said to me that once you're in the menopause that's one of the side effects it's almost like something Is crawling under your skin.

I am stage 4 and a lot of my lymph nodes are damaged I'm not sure how many are affected but I know it's a lot more than 14. I reckon it will probably be about 40. The lymph nodes still seem to function to a degree as I don't have lymphedema but my left arm is extremely weak. I've not had any of the the affected lymph nodes removed.

I've started doing 40 minutes of Qi Gong and and it's helped with strengthening my arm, and come to think of it I've not had so many of those shivers.

Hope this helps

[jersey-jazz in reply to Biddy007]

Dear Biddy007

It sounds as if Letrozole is the cause of these infernal, internal shimmering(s). It would have been nice if my doctor had shared this with me.

Interestingly, I love Qi Gong almost as much as I love dancing, any kind. With this house arrest (Please don't get me wrong. I so agree with it.), I cannot go dancing or to a tai chi or Qi Gong class and am so terribly weary that all I end up doing is lying around looking at all the things I want to do if only I had the energy.

I am actually fine for about two or three hours each day and hurry about doing things and enjoying life before the enervation sets in.

Biddy007, you have inspired me. Tomorrow morning I will be going on youtube and doing Qi Gong. Thank you!

XXX OOO

[MacroMom in reply to jersey-jazz]

I love this one...qigong bone marrow cleanse. The same teacher has some other lovely ones too. youtube.com/watch?v=HbWfnlo...(Not working as expected?)

[jersey-jazz in reply to MacroMom]

Dear MacroMom

I feel relaxed and centered again.Namaste!

XXX ooo

[Mcangel11]

People have those symptoms if coming off an antidepressant, such as effexor paxil wellbutrin. Nothing your gp or oncologist makes sense. Get a second opinion... i have been a triage nurse for 38 years of course i would have to know all your meds.The oncologist could mean that the chemo you had 5 years ago could have caused long time nerve damage..i am not a doctor and would have to know more but maybe they could change your med to start.sorry this really sucks i know

[jersey-jazz in reply to Mcangel11]

Dear Mcangel11

Thank you for your caring response.

The only meds I take are the Letrozole and thyroid drugs for Hashimoto's disease. I have never taken an antidepressant. I had a whole lot of chemo and targeted therapy and, yes, I have nerve damage in my toes. Now, my fingers are going slightly numb. It was the GP that thought of the chemo as the cause. My oncologist downplayed that. She acknowledged that I was feeling frightened about the pandemic but she did not really suggest anything but the perhaps I should see a cardiologist or maybe a nerve doctor. The meeting was so inconclusive with no step forward.

All the sisters that have responded and supported me in my introduction to this peaceful place have bolstered me enough that I really feel immeasureably better.

So, thank you!

XXXOOO

[NPmary]

I think a check up from a cardiologist might be helpful.

Wish you well.

[Biddy007]

Bingo! I have a underactive thyroid. I used to take thyroxine but I am unable to convert the synthetic hormone so I now buy Armour Thyroid from America. The shivers must have something to do with the underactive thyroid.

[jersey-jazz in reply to Biddy007]

Dear Biddy007

Interestingly, I lived and worked in Scotland for many years. During that time, at one point, I had really bad effects of Hashmoto's Disease, notably lack of energy, listlessness, loss of hair, trouble concentrating, weight gain, etc. The good specialist tested and found me to not be able to convert T4 to T3. He put me on livothyronine which is a form of T3 and presto, I became myself again. Perhaps the Armour Thyroid as a complete thyroid, has T3 in it.

I don't think that the shivers are from my thyroid situation because I never had this experience until about two months ago. However, Citomel and Letrozole may be interacting to create this very scary reaction. It's sad how we work to figure much of it out for ourselves without the necessary medical education.

Thank you, Biddy007.

XXX OOO

[Biddy007 in reply to jersey-jazz]

About 12 years ago I met with an endocrinologist called Dr peatfield who suffered with an underactive thyroid and also couldn't convert he suggested that I use a course of natural thyroxine and other supplements such as Q10 and selenium and high dose of vitamin C. He told me that I would be able to convert the T4 down to T0 naturally.

My oncologist knows that I take the bovine sourced thyroxine but unfortunately it not available on the NHS Medical NICE list. Which means that I have to pay for it privately and import it from the States.

Recently I have increased my thyroxine from 1 grain to 2. The chemotherapy does make me tired and have gained about a stone and a half in 14 months. Also my hair has become thin and lost its curl. Since I have increased my dosage I've noticed that I have lost a little bit of weight and that my hair has become thicker and more curly I also have more energy.

I'm seriously thinking about going on a low-carb diet. I am insulin resistance and apparently that doesn't help with fatty liver

[jersey-jazz]

Dear Biddy007

Are you in love with Shawn Connery too?

It seems as if both of us have been prisoners of our thyroid activity. At least with this metastasis horror we have something to take our minds of its vagaries. Meanwhile, I am going to follow your example and take Q10 and even maybe selenium. I'll take anything that has the possibility of making me feel a little better than I do.

XXX OOO

[Lakelifenh]

Hi, I have been on ibrance and letrozole comb for 4 years. I have the shimmers you describe. Sometimes they seem to spread in a pattern through my body. Up one arm down the other, then down my back. It a very weird feeling. I’ve told my oncologist, GP,and cardiologist. All think that’s it’s the low white blood cell count. It does get worse at the end of an ibrance cycle. Better after my week off. I have hot flashes a lot to. I basically try to ignore both at this point and just keep moving forward.

[jersey-jazz in reply to Lakelifenh]

Thank you for sharing your similar experience. Two oncologists both denied any connection between the Letrozole and the internal shimmering/jittering/ pulsating activity that I experience just about every night and sometimes during the day. They recommended neurologists and perhaps a heart doctor. In the past many months I have been seen by two neurologists. The first was a charlatan. The second said that the reason for the nightly shimmers was "anxiety" and tried to prescribe drugs for it, fairly insistently. I think he was pushing Zantac. For a few hours I felt better thinking that it was only anxiety. When I woke up, the next morning, reason set in and so I am nowhere with it. Like you, most of the time, I just accept it but not all of the time.

As a result of scans and blood work last Wed, I was found to be very B12 anemic and will be getting weekly B12 shots. Perhaps that has some connection.

Happy Valentine's Day!

[Lakelifenh in reply to jersey-jazz]

It would be interesting to see if it changes anything. I was anemic when I was first diagnosed. I have taken a product called Blood Builder by mega foods daily. Also I take a probiotic daily.

[jersey-jazz in reply to Lakelifenh]

I just looked up anemia and see that numbness and shivering are some of the symptoms that come from anemia. Because I am getting B12 shots, I thought that I had B12 anemia but see that it could be pernicious anemia. We have become our doctors, at times.