Just under two weeks ago (1/13), we were excited to learn that my husband, Gary, has the ROS1 rearrangement. Unfortunately, two days later he was hospitalized for shortness of breath and underwent placement of an indwelling pleural drain and use of a pump for treatment of a hydropneumothorax. This did not improve his symptoms, and on 1/21 he was discharged with home oxygen and a diagnosis of Systemic Inflammatory Response Syndrome. He still feels at least as poorly as he did prior to hospitalization.
On 1/16, while Gary was hospitalized, his onc agreed to order crizontinib for him with hopes that he would be feeling better after the inpatient treatment. Now Gary feels that it may be too late to have crizotinib do him any good.
My questions are:
1. What does it mean and what are the implications of having SIRS in this situation?
2. In this situation does SIRS get better?
3. Is it likely that crizotinib would worsen the SIRS?
3. Is it reasonable for Gary to believe that it is too late to receive a worthwhile benefit from crizotinib?
I am not asking for medical advice on what we should do. I am asking for a bit more information on SIRS and how crizotinib may impact it and Gary's quality of life. Hopefully these are appropriate questions. I searched and was not able to find related information on the site.
As always, thank you so much for your help,
Sue
Reply # - January 26, 2015, 05:26 PM
Oh Dear Sue, I hope Gary
Oh Dear Sue, I hope Gary will have the opportunity to try Crizotinib and benefit from it. I will make sure a doctor comments on this.
Much hope coming your way,
Janine
Reply # - January 26, 2015, 06:45 PM
Systemic inflammatory
Systemic inflammatory response syndrome is severe inflammation typically, but not always caused by severe infection. Was the fluid removed infected? There can be other causes, but identification of a cause is typical. Without being there, it's hard to know what exactly is meant by SIRS here; could it be a misuse of the term?
In general, crizotinib is very active against lung cancer. When very active treatments are given against cancer, sometimes they help with consequences of the cancer, such as pain or buildups of fluid.
I have never heard of or seen crizotinib cause SIRS or exacerbate it.
Reply # - January 27, 2015, 04:47 AM
Thank you so much for your
Thank you so much for your reply, Dr. Weiss. No tests revealed infection, and Gary has had no fever at any time during this episode. We think you are correct that this is a misdiagnosis. Gary received his second round of taxotere on 1/13 followed by a second Neulasta injection on 1/14. Because of this, his WBC count is dramatically elevated. We explained this to the admitting physician, but it could be he still used this to make the SIRS diagnosis.
If Gary does not have SIRS, then we assume that his current shortness of breath, cough and weakened condition are being caused by the cancer and chemo. CT scan performed 1/14 showed little progression (and the hydropneumothorax). Hopefully, Gary will be able to try crizotinib, and it will help. We are waiting to hear if/when he will get it.
Thank you again for taking the time to share your valuable insights. We truly appreciate it.
Sue
Reply # - January 27, 2015, 06:06 AM
The SOB and cough could be
The SOB and cough could be caused by the fluid build-up he had and also the cancer. I've only seen SIRS mentioned once in someone with a LC dx and they had sepsis. Has he been on any antibiotics?
Take care, Judy
I'm not a medical prof, just a LC patient.
Reply # - January 28, 2015, 04:30 AM
Thanks, Judy, for your reply.
Thanks, Judy, for your reply. Gary started taxotere followed by Neulasta on 12/23. On 12/31, He underwent a thoracentesis (his 12th one) to treat fairly severe shortness of breath. They only got 650 ml, and it didn't help. On 1/2, they prescribed Zpak, but it did not help. On 1/12, he underwent a paracentesis (2000 ml), and it helped relieve bloating but not SOB. On 1/13 he again received taxotere followed on 1/14 by Neulasta. He underwent a CT scan on 1/14 which showed a right hydropneumothorax and slight progression. He went to ER 1/15 and was hospitalized 1/16 for SOB and hypoxemia. They placed the indwelling pleural catheter and used constant suction for several days, but it did not help. He was discharged 1/21 on home oxygen and the pleural drain. Without the oxygen, Gary would be in worse shape than when he was admitted for tx. His cough is worse than ever.
So, they did prescribe antibiotics, but it didn't help. I got a FIR heating pad yesterday to attempt to help relieve some symptoms, and we are going in for another paracentesis this afternoon. I feel so badly for him...
Thank you so much, Judy, for sharing your insights and trying to help. We really appreciate it.
Sue
Reply # - February 9, 2015, 09:47 AM
Hi Sue,
Hi Sue,
Keeping you close.
Janine
Reply # - February 10, 2015, 06:49 AM
Thank you so much, Janine. I
Thank you so much, Janine. I have so appreciated all the help and support that you and others at GRACE have provided. It took a long time to get Gary's treating onc to test for ROS1, then a long time to get her to prescribe Xalkori. The insurance company denied coverage, and I finally won the appeal on Feb 6. So, so sad though that I lost Gary on 1/31. I tried so hard to keep him, but the cancer and chemo took him. He was miserable. I was so hopeful that we would get more time with the ROS1 finding, but it didn't work out. So, so sad...
Reply # - February 10, 2015, 07:55 AM
Sue,
Sue,
I am so sorry to hear of the loss of your dear Gary. Lung cancer is such an unfair battle, and I wish we had better weapons to fight it.
Our thoughts are with you at this very difficult time, with hopes for peace and comfort.
JimC
Forum moderator
Reply # - February 10, 2015, 10:02 AM
Dear Sue, I am so very sorry
Dear Sue, I am so very sorry to hear that Gary has passed on. Cancer is so relentless. I hope you won't carry resentment toward the doctor or insurance company who drug their feet on the mutation testing and drugs. It can only cause more pain for you and we will never know whether it would have even been helpful.
I hope you can find peace and comfort in the coming time ahead. You will remain in my thoughts.
Janine
Reply # - February 10, 2015, 06:53 PM
I'm so very sorry, Sue.
I'm so very sorry, Sue. Thinking of you.
-Dr. West
Reply # - February 21, 2015, 03:12 PM
Thank you all so much for
Thank you all so much for your kindness and efforts to help me and Gary. I don't hold any resentment concerning the course of Gary's treatment. I wish things would have turned out differently, but I realize that doesn't help either of us and that I must let it go.
I am grateful that Gary told me he knew I had done everything I could to keep him with me as long as possible and that I couldn't have tried any harder, done anything more or loved him better. I am also grateful that on the Monday before he died he told me that I needed to be strong and to let him go because it was no longer worth it for him to hang on - it was too much of a struggle and too hard. I cried a lot but agreed with his wishes which helped me four days later when the doctor told us it was time for hospice. Less than 16 hours later, Gary was gone.
Last fall, I read a book called, "Being Mortal" by Dr. Atul Gawande. It helped bring some perspective into how to determine what makes life worth living and when enough is enough when it comes to medical treatment. Gary was also reading the book, but never finished. I do believe though, that it helped him reach his decision and to communicate that to me. I'm sharing this information with you in case it might help you, those you love or those whom you treat medically.
My love and prayers to all of you,
Sue
Reply # - February 21, 2015, 04:46 PM
Sue,
Sue,
I am glad that you had that talk with Gary; so many times I think that the patient is holding on because they think that is what their loved ones want, while the loved ones are holding on because they think that is what the patient wants, when in truth it would be best to acknowledge the reality of the situation to each other. My wife and I were able to reach that understanding in the final few days of her life, and I think it was very helpful to each of us.
And whether you discussed this with Gary or not, in my nearly seven years here on GRACE I have seen that the greatest concern expressed by cancer patients is the hope that their loved ones, especially spouses, will be able to find acceptance and happiness in the future. As Simon54,one of my dear GRACE friends, so movingly expressed in the last months of his life:
"I think so much about how my wife, and other loved ones, will handle my death when it comes. She is not well able to talk about it now, perhaps she will never be with me, I don't yet know. Whatever may be my grief now, it comes to an end then, whilst perhaps it is only then that her grief will truly break out. I need to believe that as she lives on she will find happiness again, and will remember me in love. I hope still to be a part of that happiness ahead of her, not just as 'memory', but also because I believe people change one another through love."
I have no doubt that Gary's love lives on within you.
Keeping you in our thoughts,
JimC
Forum moderator