Hi there, I really need a doctor/oncologist to provide me with some guidance or insight. Please respond if you can. I will give you a bit of history then my questions will follow.
My husband of 53 years was first diagnosed with lung cancer November 2013 from an x-ray then a CT. After a PET scan, it showed right upper lobe tumor with mediastinal and bronchial involvement. Nothing on the left lung. Stage IIIA. Biopsy performed in December and it was positive for non-small cell ALK +.
Did 33 days of radiation on lung and chemo and in April, metastasized to brain. He then went through gamma knife radiation on the brain. In May, metastasized to both adrenal glands. Another round of chemo with two new drugs. After scans, we were told chemo was not responding so they put him on Ceritinib (xycadia) which FDA approved fast track in April to target the ALK gene. He took that for approximately 9 weeks. Day before thanksgiving, headaches came back and brain tumors (multiple around 9) showed on MRI, he then did 10 days of whole brain radiation finishing December 29th. CT scan on chest and abdomen in January and both kidneys’ shows lesion suspicious for further metastasis.
On February 4th 2015, our doctor basically released him and said that no further chemo can be offered and suggested we call palliative care service. We have not done this yet.
Questions:
Why all of the sudden did dr suggest palliative care and what does that mean when they suggest that?
My husband seems to doing fine. He is not very active and does have pain but for the most part he is and looks fine.
In your opinion and hearing what and where all his cancer has progressed do you think we are right now? It is very deceiving and I feel as though we have been dropped way too early but I am not sure. I have never been around cancer nor do I know what to look for in order to know when I should call a service.
Now that it is in the kidneys, can it spread from kidneys to other area
Please give guidance - 1268577
loving1
![]()
Posts:4
Forums
Reply # - February 20, 2015, 07:17 PM
Hi loving1,
Hi loving1,
Welcome to GRACE. I am sorry to hear of your husband's progression. I think what his doctor is seeing is that each of several treatment regimens have failed to stop his cancer from progressing. When that happens, many oncologists feel that the side effects of further treatment outweigh any possible benefit of another treatment regimen. At this point, they recommend palliative care to keep a patient as comfortable as possible.
I don't think you should view palliative care as "giving up". Treatment for advanced lung cancer has two goals: increase the length and quality of life for each patient. At the beginning of treatment, the primary focus is on killing as many cancer cells in order to give a patient the best chance at increased survival. At some point, if the burdens of anti-cancer treatment lessen the quality of life for a patient to a sufficient degree, without much chance of benefit from that treatment, the focus shifts to an effort to make a patient as comfortable as possible - to improve the patient's quality of life as much as possible..An influential clinical trial showed that the use of palliative care actually improved the survival of patients. You can read about that trial here: http://cancergrace.org/cancer-treatments/2010/07/30/is-palliative-care-…
That being said, the decision on whether to continue treatment always remains in the patient's hands. Since you are having doubts about whether this is the time to turn to palliative care, it would certainly be appropriate to seek a second opinion, preferably at a hospital affiliated with a teaching institution, to see what another oncologist would recommend. You may want to inquire about clinical trials of new types of drugs, such as immunotherapies, which work in a different manner than the treatments your husband has already tried.
I hope that you and your husband are able to make choices with which you are comfortable and which provide some benefit.
JimC
Forum moderator
Reply # - February 21, 2015, 07:38 AM
Thank you so very much for
Thank you so very much for your response. As I know that this is a reality for us, acceptance is the hardest thing. When we were going to regualr appointments and they were performing scans, I felt comfortale because I knew someone was watching him and it wasnt just me. Now I feel as though this is all up to me to keep him comfortalble. My confusion lies with why they do not feel any more scans are required. He has pains in different places but I do not know if that is attributed to the cancer or is it something different that has nothing to do with it. At least when we had labs with CBC they were monitoring his blood levles. Now that is gone as well. We have been going to one of the best cancer hospitals in the country, University of Alabama Birmingham so I am confident that we have been in the right place. My other question is, why did they not give me any sort of time frame as to where we are and how long they feel we can control this? This is just the most difficult time through all of this for both of us because of the "not knowing" and not understanding what to expect now. Thank you again for your time and for your response. I will certainly review that webisit you provided me.
Reply # - February 21, 2015, 11:51 AM
Hi loving1, I'm so sorry
Hi loving1, I'm so sorry about your husband's situation.
You should be able to ask your husband's onc questions you have though I always need to make a list so I don't forget. I can't imagine an oncology doc at UAB would object to audio recording, many people do this because an appointment is so nerve racking it's difficult to retain what's said during the visit. A recording gives you the opportunity to listen later when you can hear what's said.
Palliative care and hospice care are 2 separate entities but both focus on taking care of your needs as well as your husband's need.
Palliative care can be given alongside anti-cancer treatment while hospice care is given without anti-cancer treatment.
A consult with the palliative care team will likely be extremely beneficial in giving you a better understanding what to expect when your husband moves to hospice. For one thing hospice care is very hand on.
Below I've posted links to several blog posts written by specialists in the field that I think can help you understand better why doctors move people from anti-cancer treatment to comfort care and what support systems you should expect.
We have had an overwhelming majority of members who used hospice care. Everyone say that hospice care was wonderful.
Please don't hesitate to ask further questions once you've given the links a look. And please let us know how things go.
All best,
Janine
http://cancergrace.org/cancer-treatments/2012/08/12/hospice-is-help/
http://cancergrace.org/cancer-treatments/2011/03/10/what-is-hospice-fac…
http://cancergrace.org/cancer-101/2010/01/16/when-is-the-right-time-to-…
http://cancergrace.org/cancer-treatments/2011/01/19/why-do-we-fall-so-s…
http://cancergrace.org/cancer-treatments/2010/07/30/is-palliative-care-…
Reply # - February 21, 2015, 05:32 PM
Thank you all so very much
Thank you all so very much for repsonse. I am going to spend some time looking at these sites. This is such a hard time and not feeling alone is so very comforting to me. I will keep you posted. Thank you and god bless you!!
Reply # - February 22, 2015, 08:15 AM
Is there anyone familiar with
Is there anyone familiar with ALK+ lung cancer? When they did the biopsy, it came back with having this gene. This is the reason the conventional chemotherapy did not respond. We were approved in July for the newly FDA approved Xycadia (Ceritinib) which in tests penetrated the brain. His primary started in lung which after radiation in January 2014 did very well and is as of today still stable and even smaller. howevver, it had already spread to brain, adrenal glands and now kidney. My question too is, if the primary cancer spot is stable right now, does that mean that no further spreading will occur. I am a little confused. Once cancer metastasizes, is the spreading occur now from the secondary cancer or does it stay in that one area?
Reply # - February 22, 2015, 01:09 PM
I don't think anyone is sure
I don't think anyone is sure of from where another metastasis comes, whether it's from the primary tumor or a met. What is known is cancer cells leave the primary through the blood stream and or the lymph system and begin circulation until one settles somewhere and grows a met. FYI it takes more than a billion cells growth to be big enough to see on a scan. It can be thought of as someone letting the barn door open, once the wild horses get out they're not coming back, once the cancer is shown to have moved from lung it will continue to circulate and grow mets.
Dr. Weiss wrote a blog explaining some cancer basics that may help. http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/
We have tons on info on KRAS but unfortunately there's no good specific or targeted drug approved for it. You may want to do a search on our site. There are clinical trials the focus on KRAS mutation that you may want to ask your husband doc about or you can do a search yourself on https://clinicaltrials.gov/
I hope this helps,
Janine