Wife has Adenocarcinoma of Lungs with Mets to Bone Spine Liver as of Nov 14. Never smoked. Doctor used Carboplatin Paclitaxel and Avastin as her treatment plain schedule every 3 weeks. First treatment received all 3 drugs. Second treatment did not receive Avastin due to blood count issues but did receive the other two.
Was scheduled for her 3rd treatment but had 3 small Ischemic Strokes before the treatment. Was admitted to hospital had additional testing done MRA , consult with Neurology doctor trying to determine what caused the strokes. The strokes did affect her walk and her gripe and a little eyesight. But she was still capable of doing all three . The next day her physician came in and out of the blue told her they could no longer do treatment on her and they were going to turn her over to Hospice. I was not there at the time so I called and and spoke with the doctor. He said he felt that the chemo would be too harsh on her to continue given her weak condition. I asked if he knew what caused the strokes and he said he did not. He did say if she got stronger she could come back and he would see if she could be restarted on treatment.
If you could shed any light on the questions I have
1. Any ideas on what could have caused the strokes?
2. Are the strokes and the Avastin more than likely the reason treatment was stopped?
3. Treatment vs Non Treatment.. Any idea how much more time the treatment may have given her vs the 6 month they say she might live
4. Any other treatment you may know that could be tried
Thanks for any help
So Scared and confused
Rob
Reply # - May 4, 2015, 09:17 PM
Rob
Rob
My wife had a similar diagnosis and was also a never smoker. I have no answers for you but I'm sure one of the facilitators or docs will soon address your wife's situation. I just wanted to tell you I know how shell-shocked you are and what it feels like to be scared and confused. It's important that you stay strong for your wife and family. Most people in your shoes resist hospice because it feels like the end of hope but doctors are always concerned about doing no harm and it appears that continuing chemo right now would put your wife at greater risk than suspending treatment. Hospice is all about quality of life and keeping patients comfortable. A stay in hospice may indeed restore her strength so she can continue treatments. For you and your wife I hope and pray that is the case.
Bob
Reply # - May 5, 2015, 09:46 AM
Did they do any genetic
Did they do any genetic testing - EGFR, ALK, etc?
Reply # - May 5, 2015, 12:19 PM
4. That's a pertinent
4. That's a pertinent question from Tom. Some of the targeted therapies for people with either an EGFR or ALK mutation have a very different side effect profile thus maybe appropriate for your wife to try. Only an oncologist working with her can say whether she is best served from comfort care only. This video may be helpful, http://cancergrace.org/lung/2010/02/03/pennell-molecular-markers-webina…
1. It's not possible for us to say what caused the stroke however avastin is associated with a higher risk of stroke.
2. Again it's not possible to say why treatment was stopped. That question is best answered by her oncologist.
3. The average time a person may live with or without treatment is based on a wide range of numbers with the mean number being the one given as a guess. There's no way to know how long someone may live. It depends on the individual's health, how aggressive or indolent the cancer is and whether or not the person responds to treatment. For some treatment just makes people more ill so no treatment is best and live longer. Some people are well enough to withstand treatment and they respond well to it and live a longer life because of the treatment. It's a question that's very individual. Hospice can be stopped after a time and treatment started. Hospice is extremely well qualified to help people with cancer and their loved ones live comfortably as long as possible.
I'm very sorry there are no straight answers here. If your wife feels well and thinks she is well enough for treatment she may want to get a 2nd opinion from a lung cancer specialist at a large research and or teaching hospital.
All best,
Janine
Reply # - May 5, 2015, 01:30 PM
Tom Thanks for asking they
Tom Thanks for asking they did the genetic testing and she was not able to take that.
Bob thanks for the prayers I can use them. This seems like a bad dream and it hurts so bad. We have been together 33 years and it is breaking my heart.
Janine thanks for your insight. Appreciated.
I hope one of the Doctors on here can address a few of my questions.
I thank each one of you for all your insight. I am wounded and so lost.
Thanks from my heart
Reply # - May 5, 2015, 02:12 PM
Also, if you read Dr. West's
Also, if you read Dr. West's post here,
http://cancergrace.org/lung/2015/04/18/checkmate-057-pr/
He seems pretty optimistic that insurers may be willing to pay for off-label use of Opdivo, immunotherapy is said to be generally more tolerable than standard chemo.
Reply # - May 5, 2015, 05:13 PM
Rob and Valerie,
Rob and Valerie,
I think you'll hear from a lung cancer specialist who also specializes in palliative care. I hope she can give some expert insight into Valerie's situation. I'm so very sorry to the both of you. I know how difficult it is for a wife and believe it to be very different and many times more difficult for the one with cancer. I've heard many times over that stress is much reduced once a decision is made and plan put into action. So keep that in mind to look forward to.
Janine
Reply # - May 5, 2015, 09:19 PM
Dear Rob and Valerie
Dear Rob and Valerie
This sounds like a very challenging time for both of you. I would consider palliative care as an approach to working on strength building and symptom management. Do you have a palliative care team near by. If not hospice at home is also a good alternative. This can be for a short trial at home.
I also agree that futher evaluation of the cause of the strokes is necessary. It is a bit unusual in this setting, and I think that a thorough work up/ understanding of the cause is important.
Finally there are definitely more treatment options available. If your wife is stronger and recovers from the strokes there are other chemotherapy options as well as clinical trials.
Sending my warmest wishes to both of you!
Dr. Kavitha Ramchandran
Reply # - May 6, 2015, 03:30 PM
An Echo cardiogram was done
An Echo cardiogram was done as well as some other Neurology tests but the doctors say they dont know what caused the strokes. They did not offer any other chemo options or trials. Could Decadron a steroid have caused the strokes? She was on those at that time.
Thanks for anymore info
Sincerely
Rob
Reply # - May 6, 2015, 08:34 PM
Decadron isn't thought to
Decadron isn't thought to cause stroke as a matter fact its often used for treatment. On the other hand avastin has a proven connection to raising risk of stroke. But we can't suggest what caused Valerie,s.
Perhaps a call to the neurologist who did the work up has input not received from the oncologist. There may be issues unrelated to cancer that need to be looked at.
I hope Valerie recovers well. Have you given hospice or palliative care a call? They can be exceptionally helpful.
Janine
Reply # - May 6, 2015, 08:37 PM
Rob
Rob
One side effect of metastatic lung cancer is blood clots. My wife had 5 of them that formed in her legs after surgery to replace her hip that was riddled with cancer. It's possible the surgery was also related to the clot formation - I just don't remember. You should check with her oncologist to see if she may have thrown some small clots to her brain that caused the strokes. A remedy to that is blood thinner. I gave Beth an injection every night before bed.
Bob
Reply # - May 7, 2015, 02:35 PM
Janie yes she is enrolled in
Janie yes she is enrolled in Hospice. I just cant cope with the Hospice decision. Valerie and I are going to meet with Hospice on Monday and I am going to try and get some answers somewhere. Thanks Janie
Bob thanks for the info on clots.
Cant tell you all how much your input means.
Sincerely
Rob
Reply # - May 8, 2015, 11:42 AM
Please let us know how the
Please let us know how the meeting with hospice goes.
Keeping you 2 in my thoughts,
Janine