Transition from Tarceva to Tagrisso Chemotherapy

szhang123
Posts:9

Hi everyone, my father has been diagnosed with Stage IV NSCLC in 2013 with metastasis to the pelvic region. The biopsy at the time revealed tumor cells positive for CK7 and TTF-1 and negative for CK20. EGFR gene analysis revealed 2 mutations on exon 19. The bone lesion was permeative destructive centered along the right acetabulum, resulting in severe pain and significant in mobility issues.
The treatment regiment at the time was Tarceva (erlotinib) with radiation therapy targeting the pelvic region. The response was favorable as gradually, the lesion growth stopped and began to show signs of sclerotic healing. Since then, he has continued on Tarceva with intermittent radiation therapy to address sporadic metastasis for the past 8 years without any significant symptoms hindering the quality of life while taking Vitamin C and calcium supplements on a regular basis. The monitoring would consist of 3-months chest abdomen, annual CT, and annual MRI exams. A needle biopsy was performed on 2017, revealing "A c.2250_2264de15 deletion was detected in exon 19 of the EGFR gene at an allele frequency of 28.7%. This variant is predicted to result in loss of amino acids Thr-Ser-Pro-Lys-Ala from codons 751-755 (p.T751_A755del)."
However, at the year end of 2021, the oncologist recommended that Tarceva may not be effective in management, as the most recent CT showed an intermittent increase in the hilar from 20 mm 3 months ago to 26 mm at the time of the appointment, and should switch to Tagrisso (osimertinib) as soon as possible. We abided and the regiment was switched over to Tagrisso, but the transition has been unfavorable. In the past couple of months since the switch, my father began to experience constant discomfort on his left shoulder and upper back. The CT scan completed on June 14 revealed that although the hilar node lesion has been stabilized, multiple new lytic bone lesions have appeared in the T4 vertebral body with soft tissue component crowding the left neural foramen, the L1 vertebral body, and posterior right rib. At today's appointment, the PET scan was more indicative of the spread of bone lesions since the transition to Tagrisso. The oncologist recommended starting infusion of Carboplatin and Alimta and obtaining a new biopsy regarding the possibility of mutation.
I have been deeply distressed since the discussion with the oncologist regarding the today's results and am lost in regards to the management of my father's condition. The disease has been overall stable under Tarceva and has rapidly progressed since the switch to Tagrisso at the start of this year. I have a couple of questions left unanswered: Should we consider switching back to Tarceva or use at the same time? What is the prognosis/side effects for patients on Tagrisso with infusion of Carboplatin and Alimta? Why has there been a rapid progression and spread of bone lesions since the switch from Tarceva to Tagrisso? Has there been clinical trials regarding any new fourth-generation EGFR inhibitors for my father's condition? Any recommendations, feedbacks, and insights are greatly appreciated.

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

Hi szhang, I'm so sorry to know that your father is in this position.

It's not known if your father would have progressed in the same way whether he stayed on tarceva or moved to tagrisso (it's one of the difficult parts of cancer, sometimes you will just never know and for that I'm sorry). Anytime you're at a transition point like he is in now and before starting a new treatment is the best time to see a 2nd opinion onc(keep in mind a 2nd doesn't mean you change oncologist but just getting the opinion from a specialist who sees nothing but people like your dad every day and has access to the most up to date thoughts, practices, and trials). On the other hand, if someone is declining quickly it may be necessary to move right into treatment that will get the best results asap with the least side effects. Today the standard practice is carbo/alimta (carbo is prob as good as cisplatin without as many side effects same for alimta compared to a taxane). Adding tarceva would likely add side effects without much expectation of adding benefit. People sometimes find benefit from going back to tarceva after a break so after alimta is no longer appropriate is a good time to try tarceva again.  Unfortunately there isn't a 4 gen in place.  But there may be promising trials available that are appropriate for your dad. 

Please keep us posted on what and how your father does.  Let us know if you have more questions. I hope this helps and I hope he is feeling better soon.

All the best,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

szhang123
Posts: 9

Hi Janine, thank you so much for your kind response. It definitely brought some clarity during this uncertain time for my father. He's scheduled for the first infusion next Tuesday with the carbo/alimta while continuing on Tagrisso. The biopsy is scheduled for 7/12. In regards to the second opinion, we'd like to obtain one from an oncologist without changing our current physician of care but we don't know the process of obtaining one. Can you shed some light in regards to this matter? Is this something that needs to go through insurance or do we need to reach out another oncologist to contact through email to set up a meeting regarding the prescribed treatment?

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

We're glad to help. The link in my previous post (at "2nd opinion". sorry I didn't even point it out) is a most excellent article to answer your questions so I won't even try to paraphrase any of it, it's probably my favorite post on Grace and the post I most often share. Absolutely respond here with follow-up questions after you have a chance to take it in. I would ask why and what data suggests continuing tagrisso while taking chemo doublet. There may be a good reason but as I said before it typically adds toxicity without much benefit.

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

szhang123
Posts: 9

Thank you again Janine for guiding us in the right direction. My father has reached out for a second opinion from Mayo Clinic and they have all the electronic medical records on hand. We're currently waiting for their decision by next Friday for them to approve or reject the request for second opinion. Currently, we're still doing our own research but will likely move forward with the carbo/alimta infusion next Tuesday in hopes of controlling the spread.

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

Thanks for keeping us posted. I know how stressful this time of limbo is. I hope your father is lucky to have very few side effects, it's not uncommon and it's pretty common for people with egfr mutations to do very well on this doublet and with alimta alone.
Let us know whether he gets an appointment with Mayo.
Telemed 2nds are becoming more of an option since covid. Dr. West our founder and board president is a real fan of them.

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

szhang123
Posts: 9

Thank you Janine for all the information. Mentally coping with the recent results and drastic changes in therapy within the past few days has been quite challenging. Last Friday, he retired after 38 years of work and will be focusing on his health. We're trying to keep a good spirit and trust that the regiment will help improve my father's current conditions. He just finished his first infusion today and is doing well afterwards. Prior to the infusion, he was informed regarding possible side effects such as nausea and fatigue (among the main ones) so we made sure he was well hydrated and ate well prior to the infusions. We're still waiting to hear back from Mayo regarding the second opinion. In regards to the diet, are there resources regarding diets and supplements that can be beneficial for advanced non-squamous NSCLC patients?

Jim C GRACE Co…
Posts: 147

GRACE Community Outreach Team

Hi szhang,

Good to hear that the first infusion went well. As far as nausea, that often kicks in a couple days after infusion. Based on information provided by her chemo nurse, my wife found that it was better to prevent nausea than to try to knock it down after it sets in. With that in mind, she began to take her prescription anti-nausea medication on day two, before becoming significantly nauseous, and that seemed to be effective. She also ate more frequent, smaller meals rather than consuming larger amounts at a single sitting, avoiding foods that were more likely to cause nausea because they were tough to digest or too spicy. Though it's recommended to try to eat a well-balanced healthy diet, at times patients receiving chemo can have reduced appetite and it can become more important to find a way to take in sufficient calories even if that means consuming foods which may be considered less-than-ideal from a nutritional point of view. It also helped to get outside in the fresh air for at least a short walk, as tolerated. Your father's treatment center may have a cancer nutritionist on staff who may be able to provide helpful suggestions.

These techniques minimized greatly the side effects of the chemo, although in the middle days of the three week chemo cycle, as blood counts dropped somewhat, fatigue did set in. As blood counts rebounded in the second half of the cycle, fatigue lessened. So it's good to keep that in mind and adjust activity levels accordingly.

As far as supplements, claims are made for a variety of them, but evidence is often quite slim. In any event, any supplement under consideration should be discussed with his oncologist, in order to prevent possible negative interactions with treatment.

I hope he continues to feel well and gets good results from carbo/alimta.

Jim C Forum Moderator

szhang123
Posts: 9

Hi everyone,
Wanted to send an update regarding my father's current infusion therapy with carbo/alimta. He's reported that he has felt better since the first infusion and that the symptoms have been so far, stabilized or even improving a bit from the soreness on the left shoulder. The second infusion should be three weeks since the first infusion, which should have already been completed but there was some roadblocks delaying the therapy. At the time of the second infusion (7/25), they found that the RBC was below the normal limits and later found out that it was because my father wasn't aware that folic acid needed to be taken a few days before so it was re-scheduled to 8/1. At the 8/1 appt, the blood test revealed that neutrophil levels were below limits although my father has followed the strict instructions regarding the supplements intake the few days before that appt. Tomorrow will be the third attempt for the second infusion and I've reminded him regarding all the supplements that needs to be taken before that appt. I hope for the best and that the infusion can be completed tomorrow! Will send an update regarding the results/outcome.

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

Hi szhang,

 

Thank you for updating. I'm sorry your dad has had to put off his 2nd infusion. It's not all that uncommon to have to postpone treatments because of low blood counts and waiting or skipping a treatment doesn't seem to have too much of an effect on a person's outcome. If carboplatin continues to be a problem it can be dropped and alimta given alone which is what would happen after 4 or 6 cycles because of its toxicity.

 

How was the appointment today and has he heard back from Mayo?  BTW, if a second is still on his agenda there are many other specialists on par with those at Mayo plus virtual 2nds are a growing option since covid.   

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

szhang123
Posts: 9

Hi Janine, my father was able to complete the infusion this Monday which was great news! He's now feeling the symptoms and side effects of the infusion similar to last time. Thanks informing us regarding the option of dropping carboplatin and only going with alimta if toxicity continues. In regards to the second opinion, he was able to get a second opinion from Mayo which recommended for him to stay on track with his current regiment. If there are new clinical trials, he can be informed then to sign up if deemed as a candidate. I wanted to ask if there are any recommendations in regards to reducing the side effects and fatigue from infusion?

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

Hi, I'm so glad your dad was able to get his 2nd infusion. I meant to say earlier that Jim's suggestions are really very good. If neuropathy becomes painful which often wouldn't happen until 3rd or 4th cycle gabapentin is helpful. I put ginger in everything for nausea. Mashed potatoes are easy to eat and with butter, cream chz, etc adds a lot of calories if he has trouble eating. And if he is having trouble eating and eats pork, adding bacon or bacon grease to almost anything made food more palatable for my husband.
Like Jim said nausea pills before nausea starts. Ensure Plus if food isn't an option. I'll add as I think about or find other tips.
I know your dad just retired and isn't used to lounging about but laying on the couch and watching tv reduces a lot of problems of fatigue.
I hope you and yours do well.

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

szhang123
Posts: 9

Hi Janine, thank you so much regarding the information. He's been doing much better the past few days and has recovered well from the fatigue. I'll pass along the suggestions regarding adding some grease and using ginger to maintain a normal diet and recover from fatigue for future infusions. He's still getting used to all the free time after retirement right now. If there's any other info that can be of use, please let us know.

szhang123
Posts: 9

Hi Everyone,
I wanted to give everyone an update regarding my father's condition in recent weeks. There has been a slight turn for the worse, the Alimta infusions along with the targeted therapy (Osimertinib), seems to be losing the battle as there has been flare ups/growth in size in various areas. Overall, he's in good spirit but he's having some difficulty climbing stairs and his left back shoulder hurts when moving and sores when resting. Should he contact his oncologist ASAP regarding these side effects to discuss if there needs to be a change in the treatment options? Also, he's been trying a new diet called Keto diet that he's found online in which the researchers say that low carbs can help suppress cancer growth but I've noticed that he's been losing weight last couple of weeks. I've urged him to eat a more balanced, calorie dense, and healthy diet with food from all food groups but he's adamant that Keto diet is the way to go. What does the community think about this regarding the impact of diet, Keto, on cancer?

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

Hi szhang, I'm glad your dad has done well but I know it's stressful. 

 

Your dad should always speak with his oncologist when there are new or worsening symptoms. 

In its simplist terms sugar feeds cancer cells just like it feeds normal cells.  So you can starve cancer but it will also starve the rest of the person.  This article explains how the body uses carbohydrates and how that relates to cancer growth. 

If you or your dad are more comfortable with Spanish we have this Spanish language video about the sugar myth. 

This article, What is an Optimal Diet for Cancer Patients? Nutritional Goals with Cancer may be helpful.  Note that this diet is rich in carbohydrates. 

Eating a healthy diet is always important but sometimes just eating what you can becomes the most important part of the diet whether it's high carb low protein or vis versa or if it's an ensure plus, mashed potatoes and ice cream.

 

I hope your dad feels better.  Let us know how your dad gets along and of course ask questions as they come up. 

And take care of yourself,

Janine

 

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.