I would echo what Lisa has said. At this point, you are all suffering and it is normal to want that suffering to end soon. And please do not hesitate to post. Although we have never met you in person, you are part of our GRACE family and we do care. Just as we rejoice when a GRACEr updates us with good news, we stand beside and support those who share updates such as yours.
Strength and peace to you and your family.
<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>
Ok everyone is getting frustrated with hospice nurse now. Mom keeps having serious panic attacks, and there is a reticence or lack of urgency to getting her panic/anxiety under better control. I'm sure part of it is getting scripts sorted.
The consensus is to call hospice nurse each and everytime there is a flare up (pretty much constant today, though she's resting now). To annoy them until they do something. That does not seem ideal to me.
Tho I'm not there at the moment (my wife however, is, so I think I'm getting good info). I don't want to overreact, but I've seen in more than one thread where hospice/hospitals are notoriously slow to up meds in these situations. Hoping my preconception isn't influencing my perceptions right now.
I'm sorry to hear about the difficulties yor mom is facing.
For what it's worth sonce you started asking more about ALK elsewhere, I'll elaborate on that even though it isn't likely useful for a hospice patient who is only getting palliative care.
As you've already read, the Rx-able inhibitor drug for ALK (Xalkori (crizotinib)) doen't penetrate the blood-brain barrier into the brain (although there have been very rare unexpected lucky exceptions), the experimental 2nd and 3rd generation ALK inhibitor drugs have good odds of penetrating (not always, but early trial results suggest in most cases) and at least LDK378 can let you apply for compassionate use of it via an expanded use trial group.
However ALK inhibitor drugs are only useful for NSCLC driven by an ALK fusion (rearrangement or more commonly called mutation), or sometimes ROS1. If she has a smoking history the odds of ALK or ROS1 are very small but might be worth a shot testing for them anyway, at least if testing for KRAS (which is very common among smokers) comes back negative (often called wild type) first.
I know you said she was tested for and fond to be negative for an EGFR mutation. Was she tested for any other driving mutation?
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)
She's a nonsmoker. (She smoked for a year in college, 45 years ago...could that be a trigger?)
Not 100% sure on ALK. The onco told my sister no, after repeated questions. Not sure they tested for it or EFGR for that matter.
There is a continuum that ranges from never-smoker lung cancer to cancer in a heavy lifetime smoker. There is a particular category called colleagiate smoker, i.e., for a few years in their early twenties, and it can cause some changes that could persist decades later as reflected in the particular attributes of cancer a person gets decades later, but I would doubt that a year of smoking decades ago could be the cause of lung cancer today (as opposed to an attribute or fingerprint left behind).
Progressing now to difficulty swallowing. Hard to get her meds into her. Lucky to get some orange juice in her.
eating isn't a priority now and she may need to get her drugs some other way. Hospice nurse should take care of that. Hopefully they can also find a quick way to stop the panic attacks.
I'm very sorry to hear about her recent difficulties. Difficulty with swallowing is common, and the hospice folks may have suggestions for ways to get pain and/or anxiety medications in that don't require swallowing, such as patches, under the tongue tablets or elixers, or IVs. Sometimes, patients are put on an IV continuous infusion of medications that can be adjusted as needed, potentially with a button that the patient can push to get a small bolus of extra medication when needed (called a PCA, for "patient controlled analgesia".
Good luck. I hope it gets easier. Sometimes even with support, even with hospice, it can be a very bumpy ride, so that the best that can be done is to make things "less awful".
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
We were issued a new hospice nurse after the social worker came out and witnessed a panic attack. Social worker immediately called home base and hospice doctor, who immediately recalled the nurse and sent out another. Either the nurse did not appreciate the severity of what was going on, or trust our reports or something. She refused to change or up meds, attributed our reports of the attacks to constipation, and put laxative suppositories in. Thereby causing several episodes of defecation for us to clean up, tho not much content. She was clearly mistaken. I hope we never see her again. Ever.
New nurse upped fentanyl, prescribe phenobarb for night time, and then instructed us to dose my mom rectally. So we did that yesterday. She is close to being incommunicative last night. Too weak talk, etc. Too weak to have panic attacks, just fidgety. We talk to her, tell her it's ok to let go, we will miss her, we will take care of dad and her grandaughters. Taking very little water, just a wet sponge to her lips, and then not even that.
Breathing now is infrequent, raspy. Not able to rouse her. Today is my parents 45th wedding anniversary.
I'm glad the change was made, and I'm hoping the rest of the journey is peaceful.
I'm so sorry that your mom had to suffer so much but from the symptoms you describe it appears her suffering will be over soon. Stay close to her and let her know how much you love her. She has put up a brave fight and you have been a good son to her. Remember her how she was before this horrible disease. May God bless your mom and your entire family. Bob
Yes, I'm sorry it has been a more difficult process than it needed to be because of a nurse who wasn't up to speed, but I think you have very good reason to be hopeful that you have already been through the worst, that things will be far more controlled now, and this trial of her and you will soon end.
Everything is progressing as it should now. New hospice nurse took vitals yesterday. Blood pressure dropping, lungs are congested. She's taken no food nor water for 36 hours or so, now. Lot of noise (rattling, gurgling etc) and trouble breathing (sleeping), but nurse warned us this would happen. Doesn't make it any less hellish though. Just keeping her comfortable now.
Please know that this is really an inevitable part of the process for most patients. You're doing the right things.
I hold a special place in my prayers for those who go through "caregivers hell". Very few people realize the pressure and anxiety we face while helplessly watching those so near and dear to us suffer from this awful disease. Should you feel guilty about wanting a peaceful end to her suffering? ABSOLUTELY NOT! I can't count the number of times I wished for my wife's pain to end or how I wished I could trade places with her. I hope she can pass peacefully and put her and her loved one's suffering at an end.
Having gone through this painful process myself, I echo everything that B-1 83 said. It is awful for everyone involved, and the only hope is for an end to suffering, for all of you.
Mom passed away yesterday after a short period of restlessness and agitation following a few days of stable coma/non responsiveness. Yesterday morning her blood pressure had dropped to 70/40, and breathing had progressively slowed since my last post. She never developed the mottling, but all of the other signs of active dying were there, and predictable. I was hoping for some moment of spiritual clarity or solace for me, her or other family (as some have reported). But there was nothing.
We did the right thing pursuing treatment, but in the end, I don't think we really bought her anything related to quality time since her diagnosis in August. We had a few months of hope, but she wasn't able to do much that she would have wanted to do. We bought her 2 months of hope and confinement to a chair and 3 months of agony, pain, suffering and loss of dignity. We had to try. She wanted to try. She never asked "why me?", once.
I am so sorry for your loss. May you and your family find peace.
I'm so sorry to hear of your mom's passing, while at the same time knowing that it was time for her suffering to end. I hope that you can take some comfort in the fact that you did everything possible for her. I also hope that you will find further comfort in the support of friends and family. Please know that you are in our thoughts.
I'm so sorry your mom is gone. You all did what she wanted and what is normal during this horrible disease but all too often it lives up to it's devastating reputation. Please know you did the right thing and you've been a good child to your mom. All my hopes for peace,
Please accept my heartfelt condolences.
Please accept my sincere condolences for the loss of your mother. She put up a brave battle against an unrelenting foe. She could not have wished for a more loving and dedicated son. You did everything right and by documenting her symptoms will help other voyagers to Grace in the future identify this dreaded complication called LMC. Thank God your mother is now out of pain and suffering and finally at rest. God bless you and your family. I hope you can now find peace. Bob
Thank you so much everyone. You've all been incredibly helpful to me and my family throughout this journey. We are all so grateful for your care, concern, and support.
She died on my daughter's 10th birthday. We didn't tell her until the next day. She said, "Grandma died yesterday, didn't she?". Of course we said yes. She said, "Well it really was a good birthday present, because now I won't worry that she died every time the phone rings."
I am very sorry to learn that your mom has passed on. While losing a loved one is never easy, I hope you can take comfort in knowing she at peace and is no longer suffering. I hope your family can also find peace in all the memories you've shared with her.
A few rambling closing thoughts...
Shortly after the LMC diagnosis, her liver began to fail. It had never been MRI or CT Scanned. We'll never know if the cancer was there too from Day 1 or if it just spread really fast once the LMC reached a critical mass, or combination of all the above. These things will haunt me forever, to some degree. Not because anything would have been different from a treatment standpoint, but just because I'll never know.
In retrospect, the symptoms were always there, even though she was responding well in many ways. Brain lesions gone. Lung masses shrinking. All the while though, it was lurking. Blurry vision one day. Bad balance another. Pain in her back. Weakness in her right leg. We tracked those back to Day 1 of Taxol/Carboplatin and WBRT.
I think the LMC was there the whole time. And nobody beats LMC.