Husband - 63 yo ex-smoker X 12 years, Stage 4 NSCLC (squamous) Dx Dec 20/11. Also hypercalcemic & started q4wk Pamidronate. First-line GemCarb X 6 cycles, Jan 4/12 - Apr 26/12. Response was significant reduction in primary mass and in size and amount of nodules. Feeling best he had in 2 years. June 21/12 told "cancer is growing" 2nd-line regime Docetaxel X 6, June 28/12 - Oct 11/12. Response cancer stability. Started maintenance Tarceva 150 mg Nov 1st, 2012.
A week after starting Tarceva noticed my husband to be very fatigued & no appetite (significant change). I was aware that both are expected side effects along with the Tarceva rash & cough, which he developed.
2nd week the fatigue significant & weight loss starting.Then I noticed cognitive changes and contact our oncologist who saw him next day. CTs with contrast brain and chest, abd & pelvis. No brain mets, lung cancer stable. Calcium 3.07 mmol/L. Bone scan no bone progression.
Given IV Zometa (had had his q4week pamidronate 2 weeks prior). Over the next week hydrated 1L IV/daily. End of week Ca 2.77 mmol/L. 2 days later worsening symptoms Ca 2.9 mmol/L, admitted to hospital. After 5 days of IV 125/hr today Ca2.62 mmol/L but clinically no improvements. Lost 25 pounds/ 3 wks, sleeping 18-20 hrs/day. Intermittently confused. Finds himself 'mixed up' and realizes it.
I realize decline may be related solely to the cancer, even though all the imaging say nothing has changed. I realize the decline may be related solely to the hypercalcemia ( improvements in it incredibly slow a& not translating into improvements clinically).
Could Tarceva be the culprit? Oncologist agreed to dose reduction 100 mg. Would a Tarceva holiday be warranted? Are we missing something? What are your thoughts?
Thank you so much for your time & consideration.
Reply # - November 30, 2012, 10:59 PM
Reply To: Status decline since starting Tarceva
I'm sorry to hear of his recent symptomatic decline. I suppose it's always possible that Tarceva (erlotinib) could be the culprit, but the symptoms you're describing would be extremely uncommon from Tarceva. Because hypercalcemia can be associated with advanced NSCLC (particularly squamous) and hypercalcemia can cause most or all of these symptoms, I suspect that it's the underlying disease that is more likely to be the leading culprit here.
Good luck.
-Dr. West
Reply # - December 1, 2012, 10:59 AM
Reply To: Status decline since starting Tarceva
Thank you for your prompt response, Dr West. My head was telling me that is what is likely going on but my heart is desperately wanting there to be another reason. ;( Today his calcium is within the normal range now 2.55 mmol/L and he is definitely more awake (was awake 0800-13330) with no confusion yet today and his appetite seems ever so slightly improved.
We are starting the reduced dose of Tarceva tonight as his rash is quite significant anyway. If this is all related to the underlying disease, is there any value in continuing the Tarceva? He has a CT scan with contrast before starting the Tarceva and 2 weeks after starting (due to his decline) and the lung cancer was considered stable. I am unsure if we'd see imaging changes if the Tarceva wasn't contributing to stability after only 2 weeks anyway.
What do you normally recommend to your patients at this stage and Do you have any suggestions for anything we could use to improve his appetite? We are heading into the holidays and our daughter will be home from her first semester at University in 2 weeks, so I am hoping to keep him as strong as possible for that.
Again I greatly appreciate any and all comments you may have.
Respectfully,
Angela
Reply # - December 1, 2012, 12:06 PM
Reply To: Status decline since starting Tarceva
Hi Angela, I'm so sorry your husband is not improving. However you suggested he is having a better day today and that could be the beginning of a positive trend. Hopefully it is, fingers crossed.
Hopefully another Grace doctor will answer a weekend call to comment on your question...so we'll have more minds in the conversation.
Until then I have personal experience dealing with D's appetite issues. He has been very lucky in that megace has always helped when he can't otherwise eat. I understand that isn't true for many who have tried it. For more info on appetite issues Dr. West has that covered too as well as several other faculty in the comment section. http://cancergrace.org/cancer-treatments/2009/02/16/acs-mgmt/
While looking for side effects from megace I came across this gem of info from Dr. Harman. From a piece on fatigue she writes, "Other medications that have been used for CRF include megace (megestrol acetate) and corticosteroids like decadron or prednisone with the goal of both improving fatigue and appetite." The blog is very informative and can be found here. http://cancergrace.org/cancer-treatments/2009/05/01/cancer-related-fati…
For the sake of easily accessing background on your husband so the doctors to have context for which to discuss possibilities would you copy the background info in your first post of this thread and paste it into your "signature". It will then appear at the bottom of your posts. It's easy!
Click on your avatar (your pic to the left of your posts). this will take you to your "user profile"
Click on "edit you signature"
Paste in the info.
I hope he experiences continued improvement on tarceva if not there are several options; good ones since he responded well to his first chemo tx (responders respond)
All the best,
Janine
Reply # - December 1, 2012, 02:17 PM
Reply To: Status decline since starting Tarceva
Dear Angela,
I'm so sorry to hear about all your husband's symptoms (fatigue, no appetite, rash and confusion) over the last few days and weeks. Sometimes it really is hard to tease apart what patient symptoms are cancer-related and what are treatment-related when so many things happen at once... however I DO agree with Dr. West that Tarceva would be an unlikely cause of the hypercalcemia/confusion, and if his calcium levels are finally down now, I'd favor keeping it going for the time being. I also agree with Dr. Harman's comments summarized by Janine above-I often prescribe corticosteroids like dexamethasome to stimulate energy and appetite and this may be helpful for your husband if your oncologist also agrees...also, is the rash bothersome? Topical steroid creams and even oral antibiotics can help bring the Tarceva-rash under control....
The holiday season can be such a happy, hectic and/or stressful time for patients and their families battling cancer diagnoses. Does your daughter know he is having more symptoms of his cancer than when she was last home? Sometimes a little advanced warning and adjusting expectations can be helpful for loved ones who aren't living every minute with your husband the way you are...Also, if I might suggest one last thing, try to focus on (and celebrate) the small successes of each day of recovery from his hospitalization right now ...rather than looking too far in the future because it may lead to feeling overwhelmed or added stress.
Best wishes for these next few weeks
Sincerely
Dr Johnson
Reply # - December 8, 2012, 10:00 PM
Reply To: Status decline since starting Tarceva
Janine & Dr. Johnson, thank you both so much for taking time to respond.
Janine, I in the past had my signature showing and now it doesn't, I am unsure why. If you click on my avatar my biographical info is all there but it does not show as a signature. I have followed your instructions and other instructions I have found on here for signature and still when I follow them, I am never given the 'edit signature' option. it just does not show up. I am on a Mac and using Safari as my browser, I do not know if that perhaps is the culprit or not.
Thank you so much for the very, very helpful links on appetite and fatigue.
Dr. Johnson, thank you for your reply. My husband had been on doxycycline since the start of Tarceva and also HC 1% lotion. He rash on the 150 mg dose was still very significant. It has however improved quite a lot since the reduction to 100 mg 8 days ago. My husbands fatigue and lack of appetite still remain fairly significant but I have seen some improvements. It's definitely a roller coaster, a good day and then not. Our oncologist although wonderful with the direct chemo treatment plan, he really does not treat the cancer effects sadly. Luckily we are connected with a palliative care physician who has managed pain and whom I will be asking re: appetite and weight loss management when we see him on Thursday ( I had asked our oncologist and he suggested speaking to our Palliative physician).
Dr. Johnson, thank you so very much for your comments re: my daughter and the difficulties of managing the holidays. yes, I have tried my best to prepare our daughter regarding her father's recent decline. However, knowing and 'seeing' will be very different I am sure. Sadly, I lost my own father to lung cancer 31 years ago January 15th (he had been diagnosed only November 28th) so I do know firsthand what my daughter is experiencing and your advice to focus on and celebrate the small successes will be the advice Inwill be sharing with her when she comes home
Reply # - December 9, 2012, 09:22 AM
Reply To: Status decline since starting Tarceva
Angela, There's just no way to get around the effects that lung cancer has on everyone. My dad too died of cancer 43 years ago March 24. I doubt there are many ways to smooth the edges of watching your daddy decline and die. However I understand the palliative care teams are the people to lean on for that type of help. I think it's quite wise of your husband's onc to have you and your husband utilize the palliative doc for help they should get to know your family well and will be able to help without much prompting when your husband moves off anti cancer tx. I wish we all had that type of support. It's ok if you don't say but I wonder where your husband is being cared for.
As for the forum signature, well. At this point all I know to say is, have you looked real good :roll: I know, I'm sorry, I'm sure you have. Mine is right at the top of the page, no big fanfare just over my profile pic, it says, Profile: catdander forum moderator (Edit Forum Signature). Too I understand that the sig gets erased when changes are made on your profile so having it on your bio is a good insurance plan against losing it. Take one more look then let me know and I'll contact Mark.
I'm glad your family will be together soon. It must be so difficult for your daughter to be away at college during this time. Again please take advantage of your palliative care peeps. Are there nurses you've made contact with? I'm really very interested in how they've made themselves available to you. But very understanding if you'd rather keep things to yourself.
Janine
Reply # - December 9, 2012, 06:03 PM
Reply To: Status decline since starting Tarceva
Thanks again for your comments Janine and for taking the time to respond. My husband is being treated in Ontario, Canada. We have been connected with the Palliative care physician since diagnosis almost 12 months ago.
As for the 'signature piece' I do not get that option, truly I have checked and rechecked but I understand your need to ask :).
This is what shows up above my profile pic:
Profile: Angela
This is what shows up below it (these are direct cut and pastes)
About Angela
Husband - 63 year old ex-smoker X 12 years, Stage 4 squamous cell lung cancer diagnosed December 20th, 2011. Primary mass in collapsed (R) middle lobe measuring 8.2 X 7.0 cm, (R) sided plural effusion, multiple pulmonary nodules scattered throughout bilateral lungs. First-line chemo GemCarb regime, started January 4th, 2012. Received 6 cycles completed on April 26th, 2012. Response was significant reduction in primary mass and in size and amount of nodules. Husband feeling best he had in 2 years. June 21, 2012 told "cancer is growing" started 2nd-line regime of Docetaxel, June 28, 2012. Received 6 treatments with cancer stability, last treatment received October 11,2012. Stability remained, started maintenance Tarceva Nov 1st, 2012.
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