deb10653 Posted June 8, 2008 Share Posted June 8, 2008 Dave's forgetfulness and foggy brain have progressed to the point where this is not "living"! I am going to call the cancer center tomorrow and see if we or I can get in to see his oncologist and discuss if this is chemo/narcotics/brain met???what and no matter what I see no reason to have the fourth rotation of this chemo mix with him in this state. I am not giving up but I think he needs to be able to make decisions for himself and at this point he can't. The pain meds are a contributor I'm sure so will discuss localized radiation for his shoulder and perhaps can cut back on the narcotics. The carbo/taxol/avastin regiment showed progression of all tumors after 2 rounds with suspiscious changes in his shoulder tumor, can it matter if we stop at three and do not do the fourth round? I wish there was someone I could bounce this off of that would understand but his daughter will have an anxiety attack and accuse me of giving up... if you aren't here day to day to see the changes, is hard to explain 1000 miles away. Can you do radiation and take a chemo break and not cause irreputable damage to the outcome of other chemos? Just a lot of questions circling this morning, am so thankful he can sleep and is coherent sometimes, able to do the bathroom and things on his own yet with help getting up at times. After two months I know this journey is just starting but just feel there needs to be more quality empahsis and not quantity...anybody understand what I am saying? Deb Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 8, 2008 Share Posted June 8, 2008 If you want to "'Bounce " it off of a professional you could try Dr Wests Site. HE is our resident oncologist out of Seattle and is quite efficient at answering med questions. I believe you can get to his site thru our ask the expert forum. Thoughts adn Prayers right now. I know how hard this is!!!! Quote Link to comment Share on other sites More sharing options...
deb10653 Posted June 8, 2008 Author Share Posted June 8, 2008 Thanks Randy, I posted a "question" to Dr West on Grace site. Deb Quote Link to comment Share on other sites More sharing options...
Don M Posted June 8, 2008 Share Posted June 8, 2008 Deb: I understand. There may come a point for me that I will stop treatment and take what quality I can get for the rest of my time. I have talked with my wife about it and also have consulted with Dr. West about it. I still remain hopeful though. Don M Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 8, 2008 Share Posted June 8, 2008 Deb: Dr West was very helpful to me in considering this question. I was not in the same situation but the Avastin in the combo in question eventually resulted in stroke-level high bp. People on the site encouraged me to wait and see if the doctors could level out my bp and it did. It made it easier to stay on the treatment, for then and into Avastin maintenance when I went into remission. Then the ongoing chronic fatigue resulted in the question rearing its ugly head again--quantity or quality of life? I'm compromising and taking a break in the Fall with my oncologist's blessing. I guess what I'm saying is, if they can adjust Dave's meds, maybe he can get through one more or even three more of the chemo cocktail. It meant everything in my case to make it through the six but even four is considered adequate in many cases. That doesn't mean the question won't arise again but you have to take each one separately. For right now, I think you're right in questioning the meds. Good luck and hope the doctors really listen to you. Mine do and between visits and as a second opinion, Dr West is a godsend. I'll be watching his site to see how he responds to you. The best of luck to you and Dave, Judy in Key West Quote Link to comment Share on other sites More sharing options...
simplyklb Posted June 8, 2008 Share Posted June 8, 2008 My dad is very confused. It is bordering on hallucinations. Dad has an appt. with the onc. I think that I am going to see if they can change his pain meds. He takes 60 mg of long-lasting morphoine along with 60 to 90 mg of short-acting morphine a day. Kristi Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 9, 2008 Share Posted June 9, 2008 I do understand what you are saying Deb and I am so sorry Dave is having a tough time. I am not sure about the 4th round of chemo in your circumstances. But, I do know that even for my first line chemo, my doctor told me that they have recently started to question if the fourth treatment actually did any further good. And I am pretty sure that even if you just get through 3 of the 4 treatments, stopping at that point will not undo any good effects from the first 3. Also, I believe there can also be some flexibility in the timing of any 4th treatment. You might be able to wait a few weeks and then get it, and still have the same effect. I would talk to your med onc about this further. Take care and I hope you have a good appt and that things to start to go a little better. Sandra Quote Link to comment Share on other sites More sharing options...
deb10653 Posted June 9, 2008 Author Share Posted June 9, 2008 Thanks for all your replies, Dr West answered very promptly and actually verified for me what I have been thinking so am feeling better about this decision. I wish I was more comfortable with Dave's oncologist, in our first meeting he "assumed" I was Dave's daughter and it started us off on the "wrong" foot of sorts! I am sure he will listen and hopefully we can come up with a plan that will satisfy the quality of life issue now and also still progress on the quantity also. I will let you know what happens. Thank you again! Deb Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 9, 2008 Share Posted June 9, 2008 Deb: I saw Dr West's reply to your post. Sorry I missed that the chemo combo wasn't working, but Dr West's the best, isn't he. Hope you can get back on track with Dave's oncologist. After 24 years together, don't even worry about age differences. In fact, you could start to look at it as a compliment. Sorry not to you Dave but to Deb. Deb I can just feel you leveling out in your post and I'm so glad for you. We've all been there with these highs and lows and sometimes feeling like you're just going to jump out of your skin with the fear and worry and frustration of it all. You're hanging in there really well and best of luck with the docs. We'll be waiting for your updates, vents or whatever you need us for. Judy in Key West Quote Link to comment Share on other sites More sharing options...
deb10653 Posted June 9, 2008 Author Share Posted June 9, 2008 Well we were very fortunate, I feel, and saw our normal oncologist's partner this afternoon who we have seen before and really like! He was in total agreement with me that the pain and quality issue must be addressed. He was not sure of the cause of the mental confusion but wants to rule out brain mets so we will have a MRI tomorrow morning and then will see the radiation oncologist tomorrow afternoon. It is expected that there will be 5-10 sessions of radiation and we will see our normal oncologist on the 24th to see about 2nd line treatment, Alimta was discussed. I am feeling better about making this decision and am praying the two weeks of no chemo and the radiation will help me see improvement. Thanks again for your input Deb Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 9, 2008 Share Posted June 9, 2008 Oh Deb, I am so happy for you guys. The waiting may be difficult now but there's a plan in place! It means so much to have a plan in place. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Maryanne Posted June 9, 2008 Share Posted June 9, 2008 Will be thinking of your Deb and so sorry for all you are going through. I pray all works out for him and you can start to see your old Dave coming through agan. Hang strong, Maryanne Quote Link to comment Share on other sites More sharing options...
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