Starting Tagrisso, and quite scared!

[LilyMir]

Dear friends, a little update. I received the first precious parcel of Tagrisso and expect my oncologist to give me the go ahead to start it this coming week. Needless to say I am very scared of this new journey. If all goes well, I am supposed to take a pill a day for 3 whole years! Reading on the Tagrisso Facebook group, there is no shortage of horror stories though many people seem to tolerate it well. The oncologist gave me an info sheet but half jokingly said "if you read it, you won't take the medication". He though also said that he prescribes this medication to patients in their 80s with little concern but everyone is different and there are no guarantees. The pharmacist gave me a list of just the common side effects: diarrhea, blurred vision, skin problems, yellow nails, fatigue (uncommon ones include heart problems etc)... YIKES!! No one knows how my body will react so please send me your most positive vibes, experiences and advice!

P.S. I did my "check up" CT scan almost a week ago and still no report (like Justin, I was told it may be weeks wait!!!). Our system is crumbling under pressure and everything takes too much time but hoping the oncologist has at least a quick update on that when I speak with her on Tue. Meanwhile I just realized I gained almost 6 kg since chemo started! I am not happy about that and wonder if that is normal, good, or bad! 

[Justin1970]

Hi lily 

I hope everything goes well for you and the side effects are minimal, I will be thinking about you in the coming weeks try and stay strong and positive about it, I'm still on the dexamethasone which has definitely put some weight on me and definitely made me puffy and bloated I'm not happy about it but I guess we have to do what is best for us, I'm sure it will all go well and you know how much everyone is supporting and praying for you to get better soon keep us udated, 

All the best Take care Justin x 

[Tom Galli]

Lily,

Unusually, I had a targeted therapy drug (Tarceva) at the time when doctors didn't understand that targeted therapy formulations only worked on some forms of adenocarcinoma. My flavor of lung cancer is squamous cell. I encountered three troubling side effects: diarrhea, head and neck rash and muscle cramps. The latter two persist to this day. When I read the Tarceva Package insert of safety, I note chilling disclaimers on safety and effectiveness including a prohibition not to use in combination with platinum based chemotherapy (carboplatin). But I know why my oncologist tried combination Tarceva with taxol and carboplatin. He was clutching at short straws, trying everything to keep me alive. We had substantial discussions about the downside and the expense ($100 a pill). So I understand your expressed concern about the side effects.

Most troubling is your report about your national health system. My view is once a nation makes a commitment to its citizens to provide universal health care, it must abide by this commitment. This commitment parallels one like national defense. Has the world changed so much that it has lost sight of fundamental duties of nation-state governance?

I do hope your system recovers and that you sail through your Tagrisso therapy without side effects.

Stay the course.

Tom

[Pstar]

Sending many positive thoughts your way Lily for an easy and uneventful course of treatment. I also have gained weight after my treatment and am having an awful time trying to get it off.

[Judy M2]

Don't be scared of Tagrisso, it's so much easier than chemo and radiation. Every drug comes with potential side effects. If you get side effects that aren't tolerable/manageable, they can always reduce your dosage to 40 mg. It seems to work for many people.

I've been on 80 mg for 30 months and my side effects are nasal allergies, splitting nails, dry and frizzy hair, dry eyes, and occasional eczema flare-ups. All are manageable and I'm NED. 

I am getting regular 3-month echocardiograms and am being followed by a cardiologist to catch any cardiac issues that may develop. Everything is normal now. 

Best of luck with Tag! 

[Karen_L]

LilyMir,

Welcome to Team Tagrisso! I've been taking 80 mg./day since March. After a little nausea the first day or so, my side effects have been minimal: peeling skin on my fingers, more splitting nails than usual, a couple of mouth sores. Oh, and constipation. Like Judy, I am receiving regular heart checks. 

While I'm glad you've found the Tagrisso FB group, I've found it best for me to limit my time there. I've found the EGFR Resistors FB group more helpful to me.

I hope your Tagrisso providers instructed you to be sure to drink plenty of water-- I was told 64 oz.per day. Also I hope that the pharmacy specialists checked Tag against your other medications to rule out negative interactions.

As to weight gain.... I gained 30 lbs while on high-dose steroids. Urg. Once things settle down for you, I bet you'll be able to give more attention to other areas of your life, like losing weight. Try not to worry.

 

 

[TheJRP]

Hello! 
My mom has been diagnosed with stage 4 cancer in 2017. In 2018 she was given tagrisso and took for 2 years. Her worst side effect was daily diarrhea. It was very effective for her. I hope your journey with targrisso goes well for you! 

[LilyMir]

Hi all,

Thanks all for the kind responses and advice!

I spoke with my oncologist today and was pleasantly surprised that my CT report has been out already so the warning about long delays by the other doctor were not accurate it seems. The scan is clean so this is of course good to hear (though somehow I do not trust radiology anymore, after a radiologist missed my large lung nodule 4 years ago!).

A couple of questions I missed asking earlier:

- Did those who take Tagrisso start it off gradually, like one day on one day off the first week or two? Some are recommending that but not AstraZeneca.

- Do those who took the drug experience bad side effects to their blood like with Chemo (immunity suppression, anemia)? I was advised to wait at least a week on starting Tagrisso since I had my bivalent 4th COVID vaccine dose last week and was a bit surprised as I though Tag does not affect blood like chemo...

- How often do you have blood, ECG and other tests while on Tag? My doctor said next checkup is not until 4-6 weeks after starting Tag. Oncologist will order blood, ECG and Xray only. No brain MRI, no echo for heart. Part of me is happy as I had sooo many scans with contrast the past year but another part is worried. Onc said my brain scan was clear in late May and they only do one when symptoms arise!

[LilyMir]

On 9/19/2022 at 6:59 AM, Tom Galli said:

Most troubling is your report about your national health system. My view is once a nation makes a commitment to its citizens to provide universal health care, it must abide by this commitment. This commitment parallels one like national defense. Has the world changed so much that it has lost sight of fundamental duties of nation-state governance?

I do hope your system recovers and that you sail through your Tagrisso therapy without side effects.

Stay the course.

Tom

Hi Tom, indeed our Canadian healthcare system is teetering. The reasons are complex and many but mainly:

Pandemic: COVID decimated healthcare workers. Populist policies that prioritized economy and promoted mass infection lead to system breakdown and mass exodus of healthcare workers who are abused by system and people. This is becoming worse with a housing crisis and extreme inflation making cities more and more unlivable.

Bad gov: We keep voting for clowns who do not know how to govern and instead of expanding doctor/nurse staffing keep appointing admins. No one get punished when they screw up, there is a revolving door. Germany has a world model healthcare system (public) and they spend the same as Canada per capita. Canada horrifyingly has 10 times the admin staff per capita. Talk about inefficiency!

Corruption: So many are trying to crash our public healthcare system so that they setup a private for profit one to line their pockets. In Ontario for example, gov refuses to pay nurses more than 1% increases. So many quit especially with the extreme abuse during COVID and staff shortages become so severe. So, the gov proceeds and... hires nurses from predatory private companies and pays them 170% the rate they used to pay our own nurses!! Calls for privatization are not longer whispers but main stream media columns. Solution for poor people being proposed: Euthanasia (seriously, widely being sold as an alternative for chronic illness, elderly, vulnerable that we have it now as 6th reason of death in Canada). You cannot make this stuff up, surely on our way to dystopia if this continues, and it breaks the heart.

I quickly got my diagnosis, top rate surgeon/surgery, standard chemo and now targeted therapy and paid 0. Hope the public system survives as so many people need it to remain alive! Healthcare is a human right in a civilization.

 

[Judy M2]

Like @Karen_L, I find the EGFR Resisters Group more helpful and in fact recently left the Tagrisso FB group.

To answer your questions:

1. I did not start Tag gradually. 80 mg since day one. Only your oncologist should tell you what to do. 

2. I suppose waiting a week to start Tag is OK but only if your oncologist is giving you this advice. Don't take medical advice from the FB group. 

Does Tag have blood side effects? It can affect your kidney and liver function, but in the first year you'll get monthly bloodwork done to catch that early if it happens. It can cause low sodium, especially if you're chugging lots of water. My best advice is to see your primary care doctor about 2-3 months after starting Tag for bloodwork, including B12, electrolytes and iron. Your oncologist won't necessarily test for those. I was low in all of them at one point. 

I don't see how the Covid vaccine or booster would cause any odd bloodwork. I just had my bivalent booster and flu shot yesterday. You do want to tell your scan technician if you've had any vaccines in the weeks prior to scans so the radiologist can be alerted to any possible temporary lymph node enlargement. 

3. Frequency of bloodwork and scans. Before starting Tag, you should get baseline echocardiogram and EKG done and see a cardiologist. If your oncologist won't order these, then get a cardiologist who will and who will follow you. You'll get bloodwork monthly for the first year, and thereafter every 3 months with scans. Some people get scans every 4 or 6 months, it all depends on insurance coverage. Your first scan should be 4-6 weeks after starting Tag. Scans are usually CT scans, but my oncologist orders PET/CT scans every 3 months. I would not want to rely on Xrays in lieu of CT scans. I've never had a brain MRI, FYI. 

I went for more than a year before my oncologist started ordering regular EKGs and echocardiograms, but now those are part of my Tagrisso regimen. 

[Kamoto]

Hi, I’ve been on Tagrisso since July 4th. Don’t skip a dose, start it and be diligent about taking it is what Accredo Pharmacy will tell you.  I take it at night and have had zero side effects.  The only problem is my feces.  It’s very toxic, and if I dont take the anti diarrhea med, it will come out very soft.  When I take the anti diarrhea med it comes out hard and irritates my anus.  I take the 80 mg.  This stuff works fast.  My rib tumors seem to be gone as the pain has evaporated.  My back tumors may also be gone as those were painful.  My primary lung I never felt pain there.  I used to take morphine for pain, now I just use it to relax twice a week.  Im going in tomorrow for PET scan so that is nearly three months since starting the med.  hopefully tumors are gone or reduced significantly.  My Echo for heart is on Monday.   So going back for an echo within 6 weeks of starting the med seems excessive.  I have the heart of a sixteen year old.  Good luck to you

[Kamoto]

I should add, I dropped from 197 to 186 while on Tagrisso.  I still eat the same, love the weight loss, but know the oncologist won’t. 

[Karen_L]

@KamotoIt’s nice to see you here, especially with the good news about Tagrisso. 

[LilyMir]

A little update and Q dear Tagrisso team:

I started Tagrisso 2 days ago. I am noticing a little cough starting up again, on and off. Is this a bad sign (my mind goes to serious side effects like lung damage) or simply a common side effect of Tag? I also feel like my nasal drip is back, which I used to have almost daily before my diagnosis and now only have on occasion (doctors previously dismissed as not related to cancer and they say may be "allergy"). 

BTW, does anyone know how long it takes for side effects to show? So far, just the little cough but I am very worried and I hate that.  Not a good life worrying about taking a daily medication that I should take for 3 years but I cannot help it!

[Karen_L]

@LilyMir From one post-nasal dripper to another, that post-nasal cough can be a pesky thing. A real nuisance! 

I have no idea how long it takes for Tag side effects to show up. I do know that, if I let it, my imagination can turn any new body thing into a side effect or evidence of progression. Then I remind myself that sometimes I just have post-nasal drip, you know? Or, even if it were to be a side effect, so what? Do I need to know that in order to address the symptom?  

You've got this, LilyMir. You can do it. Deep breaths....

[LilyMir]

Indeed dear @Karen_L, after reading the Tagrisso pamphlet, my mind may be playing tricks on me. Is that pain in my eye? Is this cough a serious one? Why is my head throbbing? Why are my side temples hurting when I cough? All can be symptoms of something indeed and all can be just minor things that we get from time to time. This is tough, I abhor cancer, and this damn cancer that shattered my normal life.  I still cry after dropping off my kiddo at school. Hope things settle with anxiety and worry soon. Thanks for being there!

[Karen_L]

Dear @LilyMir, I so relate to all that you are feeling. The waves of grief and anxiety seem to have a life of their own, don’t they ? For me, the grief can be triggered by seemingly small things.

I would not be able to live with this cancer without my counselor. I call him CancerShrink.  He is helping me to integrate the facts of cancer, my treatment, the changes to my life, and to learn to make a new, meaningful life.

You are carrying so much worry. I hope you’ll think about finding yourself a support person. 

[Justin1970]

Hi lily 

So sorry to hear your struggling I hope you feel better soon, the worry and anxiety is terrible try and stay as positive as possible I still have terrible moments of depression about everything that's happened but i get alot of comfort from being around all of my family as much as possible, I don't think it ever leaves our minds completely but we have to enjoy what we have right now

Take care Justin x 

[Judy M2]

Side effects from Tag can show up months after starting it. In m case, the cough started 7 months in. My oncologist referred me to my pulmonologist, who diagnosed nasal allergies/post-nasal drip. Now I take Claritin every day. 

At 16 months in, I developed an itchy rash, which my dermatologist treats as eczema with a prescription steroid ointment. The rash occasionally comes and goes in different places, even though I moisturize well. 

I refuse to stress about anything. I've already survived the worst that cancer can offer, and as long as my quarterly scans and echocardiograms are normal, I'll just roll with it. 

You might want to see an ophthalmologist for a base exam of your eyes, so if you notice anything unusual, they'll be able to compare to your pre-Tag exam. Dry and/or blurry eyes are common with Tag, and this includes sensitivity to light. I use Systane lubricating eye drops at the suggestion of my ophthalmologist. 

Many Tag side effects are annoying, and it helps to have regular appointments with your primary doctor and the other specialists on your team to keep up with your health. 

[LilyMir]

Hi @Judy M2I seem to now have a few isolated spots on my lower leg and lower arm that look like pimples but do not seem to be that really. Is that the rash Tagrisso gives sometimes? My oncologist pre-emptively gave me a cream (I see it is an antibiotic (Clindamycin) and hydrocortisone) and I will try it tonight. The spots are red with a white centre peak and are itchy. 

[Judy M2]

It's very possible. I would use the cream, and if it doesn't help, let your oncologist know. You may need to see a dermatologist. 

My itchy rash is classic eczema, and my dermatologist prescribed mometasone furoate ointment to use when I get a flareup. Luckily, he is very familiar with TKI skin side effects. 

Once my rash heals, I make sure to moisturize those areas with an eczema therapy ointment. Sometimes I use a tea tree oil ointment too. Moisturizing is very important. You may also need to drink more water too. 

[LilyMir]

Thanks for sharing your experience Judy, much appreciated. I will keep an eye, for now the few spots I had are healing so not sure what it was (my mother suggested they are insect bites :). Certainly it will be a struggle to figure out side effects of Tag from other health issues or transient events given its long term use. Yesterday was my first with (nasty) diarrhea but it seems to have improved with Imodium, fingers crossed. Let us hope my blood and heart checkups are good in 2 weeks, which would be my first month on tag!

[Judy M2]

Those spots can come and go. I'm going to guess that you'll get fewer as time goes by and you adjust to the medication. 

Some people have dramatic results from Tagrisso in a few short weeks. I hope you do too. 

[LilyMir]

Thanks Judy! My case is adjuvant Tag use so my only gauge of success is no recurrence. Will be holding my breath for a long time! Fingers crossed.

[LilyMir]

Hi guys, I am noticing some blood when I blow my nose, not a nose bleed but kind of bright red blood while cleaning nose. I also get so thirsty at night, more like very dry mouth that almost feels like my mouth is sticking to itself if that makes sense. Did anyone have this while on Tagrisso? Thanks!