If you mom did not progress on alimta many people have done very well on it for long periods of time.
The only prevention for brain mets is usually saved for sclc and is a slightly less dose of whole brain radiation known as Prophylactic cranial irradiation. Since not all people with nsclc get brain mets it's usual to wait and see if they appear then treat them with stereotactic brain radiation or whole brain radiation depending on how many are present.
If your person's blood sugar is very high for a length of time it's possible to have small strokes that cause speech problems. An MRI should be able to show what if anything is happening.
I hope your mom is able to find relief.
I like Janine's thoughts.
Beyond that, I can't guess whether what's being seen is progression or stroke or side effect of the drug. Her doctor(s) should be able to figure it out, though.
At some point for all of us we'll run out of targeted drugs that work. At that point we have to turn back to traditional treatments like chemo and radiation, although they my offer diminishing returns after the first chemo combo tried (i.e., low odds of benefit, sooner or later). Her oncologist will be very knowledgable about chemo options. At some point it might be worth trying an anti-PD1/anti-PDL1 immunotherapy checkpoint drug although the odds of benefit to EGFR/ALK/ROS1 seem low and there's risks that might make things worse instead of better.
Craig in PA, USA
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)
Thanks much Janine and Craig. You have shared some thoughts worth pondering over. I was not aware that high sugar levels could cause mild / small strokes. I will keep you all posted on the outcome of the MRI. Thanks again for the super quick responses, and have a wonderful weekend.
I should clarify the link between stroke and very high blood sugar is associated with diabetes. But diabetes can be pretty sneaky. It's pretty unlikely, but it happened to my mom and as we've all learn anything is possible.
Folks - can someone help me understand this better... I got a liver function test done for my mother today... most of the values seem to be in or near the normal range, with the exception of the following:
1. ALKALINE PHOSPHATASE (AMP - PMP) - 317 u/l (normal range 35 - 105 u/l)
2. GAMMA GT (IFCC - PNPbuffer) - 527 u/l (normal range - 6 - 42 u/l)
thanks much / DJ
my mom is currently on Ceritinib - 450 mg / day... she started on Ceritinib about 2 months ago... prior to that, she was on Crizo for about 4 months... thanks / DJ
Your oncologist is in the best position to interpret test results and make judgements about them.
Ceritinib is often challenging to patients' livers. Patients sometimes need a break from the drug to let their liver recover. I think the side effects are often more manageable with a reduced dose. Ask your oncologist.
Dear all - my mom who is currently on Ceritinib, has developed severe itching issues and some mild localized skin rashes. We just got Liver function test last week, and her liver enzymes, though elevated, are within acceptable limits. Has anyone faced a similar issue, and if yes, how has this been controlled? Pointers will be appreciated.
Sorry, I don't know anything about that although I think I see some drug information online which reports rash or itching as a possible side effect. Have you seen this discussion?:
And these summary pages of information?:
Craig in PA
Dear all - my mom is currently on Ceritinib for the past 6 months, and has had reasonable success on this ALK inhibitor.
About 8 weeks ago, she had a viral herpes simplex outbreak, with severe rashes on the face (more severe around the left eyebrow and several blisters on her scalp). The rashes cleared out with treatment in a couple of weeks, but she still continues to experience severe sensitivity around her left eyebrow / temple and constant headaches.
Both her Onco and her general physician have indicated that the sensitivity and headache may continue for a period of 3 to 6 months. Her last MRI around 3 months ago was clear, and the doctors believe that the persisting sensitivity and headaches are the result of the viral outbreak
Has anyone had a similar experience particularly an viral outbreak, and has had persistent headache due to this... if yes, how was this resolved, over what period of time..
Pointers will be appreciated.
Thanks / DJ
It's good to hear your mom is responding to ceritinib. I wish she didn't have these awful side effects. I'm afraid I don't have anything to offer. Perhaps someone else has been through it and will comment. It sounds like she's moving through the appropriate channels. I will see if our Pharmacists faculty has anything of add.
I hope she feels better soon.
Thanks Janine... do let me know if the Pharmacists have pointers around this.
DJ, I agree that this sounds like post herpetic neuralgia or pain in the area where there was a herpetic outbreak. It is pretty common after shingles, which is a similar virus. The challenge with this type of pain/discomfort is that it is more of a nerve pain which is harder to treat. Unfortunately, the 3-6 month recovery window in on target. There are some medications like pregabalin (Lyrica) and gabapentin (Neurontin) that may be able to help with the nerve pain, but those can have side effects too (sleepiness, mental status changes) so it's a risk/benefit discussion to have with your mom's medical team.
I certainly feel her frustration though. I am very glad that the MRI was clear though, great news! I chair the Molecular Tumor Board at Moffitt Cancer Center and it's always wonderful to hear success stories of targeted therapies.
Christine M. Walko, PharmD, BCOP, FCCP
Personalized Medicine Specialist
Moffitt Cancer Center, Tampa, FL
Dear Dr. Walko - thanks much for taking to the time to respond.
My mom is currently taking Gabapentin 300mg twice a day. While this is helping her somewhat, she is not fully functional given the pain... It has been around 3 months since the viral outbreak, and I guess, she needs to ride this out. .. from what I have learnt sometimes this pain can persist way beyond the 3 - 6 month period.. so I guess we can only hope that this pain subsides, as the medications themselves have other side effects, besides being less effective over a period of time...
Thanks again for your response.
Dear all - will appreciate pointers. My mom who continues to be on Ceritinib, is recently going through bouts of extreme fatigue. This has been going on for about 2 weeks now.
Her sugar levels were a little elevated (around 250), but has come back to a normal range over the last day or two. All else seems normal. Her food intake is also adequate.
She meets her Onco tomorrow, but I wanted to run this, within this group, to see if anyone has one pointers to address this.
Her last PET scan in Feb 17, indicated a stable situation. She however has intermittent headaches due to a Herpes Virus outbreak that she endured in Jan 17. Her last MRI, though over 4 months ago, indicated no activity in her Brain..
I'm sorry to hear that your mom is suffering from such fatigue, which is a common side effect of ceritinib. As Dr. West has stated:
"Toxicity is a potential challenge, more so than with XALKORI, especially gastrointestinal issues. Nausea was noted in 82%, diarrhea in 75%, vomiting in 65%, fatigue in 47%, and liver function tests were noted to be abnormally elevated in 35%. These issues were dose-related, and many of the researchers with the greatest experience with this agent have conveyed that the dose of 750 mg daily may be too high for many people, but that they have often had a more successful balance of efficacy and tolerability after reducing the dose to 600 mg or sometimes 450 mg per day (4 or 3 tablets, respectively)." - http://cancergrace.org/lung/2014/04/30/new-approval-for-zykadia-ldk378ce...
Of course it's possible that the viral outbreak is playing a role, and perhaps medications she has used or is using to combat the effects of the virus. Perhaps you could discuss an adjustment in one of her medications in an effort to lessen her fatigue.
I hope she has a productive meeting tomorrow.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
Dear Jim / Janine / all - my mom is currently on Ceritinib. For the last 4 to 6 weeks, she has been experiencing severe GI issues - particularly bloating, indigestion, inability to eat much, having a fullness feeling etc. As she is unable to eat much, her energy levels are down, and fatigue is creeping in. Her last bloodwork two weeks ago, indicated her liver and other vitals are in the near normal range.
We met her Onco today, and upon examining her, he indicated that clinically she seems stable. (Her last PET was during March 17), She has been on Ceritinib for about 10+ months now, and her current dosage is between 2 / 3 tabs of 150mg each.
Her Onco indicated that the issues seemed to be arising out of drug toxicity / intolerance to Ceritinib, and has suggested a drug holiday (around 6 to 8 weeks), as he is focusing on her quality of life, based on the fact that she appears clinically stable.
He wants to do a PET scan at the end of this 8 week break, and then determine whether to get her back on Ceritinib or explore an alternate.
Just wanted to reach out to the larger group, and get additional thoughts on what would be an appropriate option at the moment?
Thanks much and sorry about the long post.
Although it's good to hear that her cancer is stable, I'm sorry that your mom is having such trouble with ceritinib side effects. As has been noted previously, it can be a difficult drug to tolerate, and dose reductions are common. The experience with another targeted therapy, Tarceva, may help guide your thinking. Although the standard dose is 150 mg per day, a number of patients who are particularly sensitive to the drug, both in response and side effects, have been able to reduce all the way down to 25 mg daily with good success. So perhaps a further dose reduction is in order.
On the other hand, a treatment break can work wonders, not only physically but mentally as well. It can provide an opportunity for a more complete resolution of the side effects, allowing a return to ceritinib, perhaps with a further dose reduction.
If she does resume ceritinib, perhaps some of the ideas shared in this thread will be helpful.
I hope your mom starts feeling better very quickly.
Dear Jim / Janine -a quick question. Per my last update, my mom's Oncologist, suggested a drug holiday (she is on Ceritinib) of 4 to 6 weeks, due to severe GI issues and fatigue. Given this she has stopped taking Ceritiinib, from July 27, 2017 (about 2 weeks now).
For the past few days, we have noticed that she has developed cough, along with mild intermittent fever and fatigue. While this could be the general cold / cough situation, I am concerned that the drug holiday could be causing this...
I am planning to meet with her Onco today to discuss this, In the meantime are they any signs that we should keep an out for, which indicates that the tumors are acting up, given the break from medication? Pointers will be appreciated.
I'm sorry to hear that your mom is suffering from these symptoms, but it's very difficult to say whether they are cancer-related or result from some other cause. Ceritinib itself can cause cough and fatigue. Two weeks is a short time for tumors not only to grow but grow significantly enough to cause new symptoms, although cancer can do some unusual things. I think these symptoms would be most suspicious for cancer progression if they continue to worsen, so her doctor will probably want to keep a close eye on her symptoms, and if necessary move up the date for her next scan.
That sounds like something to discuss with her oncologist.
You already know the doctor will want to check for flu/cold/pneumonia. Pneumonia can definitely happen to people with lung cancer (it happened to me in fact).
Another possibility is something called TKI Flare -- where the cancer cells wake up together after stopping an inhibitor drug and seem to progress very fast for a while, sometimes so badly that a patient needs to be hospitalized to save their life. TKI Flare is not typical but can happen to some patients. If it occurs it is most often about a week after stopping the inhibitor though anywhere from a couple of days to 30 days after could be possible.
Or, of course, what you're describing might be a normal resumption of cancer activity as the cancer cells are unleashed from the inhibitor drug or something completely different that people who aren't trained doctors aren't aware of.
Good luck with the doctor appointment, but it might be useful to ask the doctor to check for "TKI Flare" (tyrosine kinase inhibitor flare).
in PA, USA
Thanks for the quick responses Jim and Craig. I will certainly be discussing these points with her Oncologist next week. Hope you all have a wonderful weekend.
Dear Jim / Janine / all - hope you all doing well.
I had a question pertaining to my mother's recent PET scan. She is stable, and all of the Lesions have shown NIL SUV activity, with the exception of one Lesion.
The particular sentence from the PET report where she has SUV activity reads as "soft tissue nodules along the right parietal and visceral pleura: SUV 2,4; Previously 2,3, 3.2 and 4.7" (this is fourth PET scan). She is currently on Ceritinib for about 16 months now
My question is - what would be the best approach to tackle this particular spot. The SUV activity has gone up marginally from 2.3 to 2.4. It is possible this particular spot might have a different sub mutation. I am not sure biopsy is an option. At least the doctor has not suggested this.
Does it make sense to radiate only that particular spot, and continue on Ceritinib, or consider moving onto Lorlatinib (she has an option to be considered for Pfizer trail)
Pointers will be appreciated... btw my mother lives in India.. so alternate options are fairly limited.
As you may know, sometimes one can use targeted radiation to extend the usefulness of the targeted drug by months (or even a year or more). This is especially helpful when one is doing well on a targeted drug and options for a next-generation targeted drug are limited,
The difficulty with this is that "most of the time" the progression is too diffused/scattered or in a difficult place, so targeted radiation isn't really an option -- a more systemic approach is needed. And there's the issue of making swiss cheese out one's lungs unnecessarily early if there is another systemic solution with high odds.
Her oncologist and a radiation-oncologist will need to assess the viability of doing this, and assess what other treatment option mike make sense (or more sense). E.g., for ALK-driven lung cancer, lorlatinib might work better overall and avoid making a spot of "swiss cheese" in that area of the lung, depending on whether & what mechanism of resistance is found in a a fresh biopsy of the new progression.
Ask the oncologists, and maybe have her oncologist contact an ALK/lorlatinib expert like Alice Shaw a MGH in Boston if the answer isn't clear to him/her.
Craig in PA
- ROS1 patient
In addition to the very helpful response from Craig, I think one point should be emphasized - the change is SUV is so slight that it is of no consequence at all, and Dr. West and the GRACE faculty have often stressed that change-of-treatment decisions should not be made on that basis alone. In general, when a targeted therapy has the cancer under control, as your mother's cancer is, the typical choice is to continue that treatment and get the maximum benefit from it.
That being said, it is possible, as Craig discussed, to use local treatment on a single remaining lesion, but that would require a thoughtful weighing of the advantages and disadvantages of such action.
Thanks Jim and Craig.. great inputs. I concur with Criag's thought of avoiding a Swiss Cheese scenario.. and Jim your point on the SUV variation being small and hence not significant is appreciated as well.
Given the fact that my mother's oncologist does not seem overly perturbed with the SUV reading, our current course of action is stay on Ceritinib, My mother has been able to tolerate the drug, at a reduced dosage of 2 tabs (300mg) per day.
I do recommend you allow the oncologist discuss it rather than making assumptions. For example, what if it turns out that no other systemic treatment has good odds in her particular case and currently the spot is nicely contained & targetable (lucky dog!). Some things we just don't know and you need to hear the best educated guesses around (not necessarily ourselves) before deciding which bet to gamble on. If I could have stopped the resistance I currently have early before it started spreading I'd have been glad to have one bubble of swiss cheese effect in exchange for eliminating that problem that I'm now facing. (There aren't many options for dealing with my drug-resistant ROS1, and the best option experimental trial drug that I'm taking might not yet up to the dose level that it needs to be for it to have its best shot at control.) On the other hand, my progression becomes hazy and diffuse from the start, so I'm not a good example.
DJ, it's good to hear you're mom is still doing well. I wanted to weigh in on what you and Jim already touched on, Lorlatinib. This may be your mom's chance to give it a go. Like you said there isn't as much opportunity to try new drugs as you'd like and once the trial is full she may not have another opportunity. It's worth having that discussion with the onc.