sueliz61 Posted July 25, 2010 Share Posted July 25, 2010 Hi everyone. The past week has been a hard one. Kurt's fatigue has actually gotten worse and it is breaking my heart. He is beginning to get panic attacks, is sob and is wheezing. His legs are not retaining fluid and the dr says his lungs sound clear, so not sure what it is about. He needs to sleep propped (?) up or he feels like he can't breath. His red blood count is just above the line for a transfusion so that might explain the sob. He did not have his chemo treatment on Thursday because of his blood counts and kidney function but will be getting a petscan on Tuesday. Then we can decide how to proceed. Onc originally was going to have him get a ct scan but wants to see better clarification and he can't have contrast. I did mange to get him out this morning to watch the "wharf to wharf" race. Annual event that we have always watched with SJSU Alumni. He enjoyed himself but is "out for the count" now. I am on pins and needles waiting until we get the results of the scan - either Wednesday or Thursday. Some of his symptoms remind me of how he was last year before dx of NHL. Onc said that he is not too concerned about recurrence because he is on chemo drugs now. But he also said that there was "no way Kurt's lung nodes would be cancer, because no one has such bad luck". At the time I told him that I wasn't superstitious but that he should NOT say that and I was right. I have had a few weepy days, but he is so stoic and even tempered I don't know how he does it. I asked him last night if he ever feels like crying and he said -no. what good would it do. I told him that it helps me. Maybe the anxiety pills help keep him in a somewhat soothing place. I will keep you posted and let you know the results of the scan. Please send positive thought and waves this way. Sue Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 26, 2010 Share Posted July 26, 2010 positive thoughts , Prayers Braiding my hair so it is crossed and fingers toes and anything Else I can cross for You tonite and this week!!! Will say extra prayers for you tonight in a minute... Hope things go well and I think its good that lungs sound clear at the least!! yes sob is red blood cell related and not sure about fluid retention but I do know that proteins like egg whites can help that problem causerie thats what they gave deb for her swelling when she was in hospital a while back.. I learned that much... Quote Link to comment Share on other sites More sharing options...
sueliz61 Posted July 26, 2010 Author Share Posted July 26, 2010 Randy Thank you and thank you for the chuckle. Can you post a picture of the braided hair? Sue Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 26, 2010 Share Posted July 26, 2010 Hi, Sue. A low hemoglobin (just above the need-a-transfusion cutoff, 8.0 according to my clinic) certainly will cause SOB. I know it did for me. Actually, they offered me a transfusion when I was at about 9.0 HGB, but I declined it for some reason. If it happens again I think I'll take it, since I hear it makes a big difference very quickly. I've been sleeping with my upper body elevated for years now, and that helps too. Let us know how the scan turns out. Good luck and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
eric byrne Posted July 26, 2010 Share Posted July 26, 2010 Hi Sue, I am just dropping by to say hello,please pass on to your husband my best wishes for his scan to-morrow my prayers said for you both, that the results will turn out well. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 26, 2010 Share Posted July 26, 2010 Sue, many positive thoughts and waves to Kurt and you. Take a deep breath and know we are waiting with you. I never let anyone get past me wearing a stethascope (sp?) without listening to my lungs. Clear lungs is a very good sign. Post the CT results as soon as you can. Judy in KW Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 26, 2010 Share Posted July 26, 2010 sending good thoughts your way and Kurts... please let us know the results. Maryanne Quote Link to comment Share on other sites More sharing options...
Joppette Posted July 27, 2010 Share Posted July 27, 2010 So? Any results yet? Been praying and hoping for answers for you both! Judy in MI Quote Link to comment Share on other sites More sharing options...
sueliz61 Posted July 28, 2010 Author Share Posted July 28, 2010 No results yet- we have appt tomorrow at noon. I am on pins and needles , but he is pretty much sleeping through it. Thank you for all the well-wishes. I will let you know the results - hopefully good news asap. Sue Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 28, 2010 Share Posted July 28, 2010 Prayers and positive thoughts for good news ! Think positive!! Quote Link to comment Share on other sites More sharing options...
sueliz61 Posted July 29, 2010 Author Share Posted July 29, 2010 Good news and not-so-good news. We saw Kurt's onc today for the results of his petscan and latest bloodwork. Good News: Decrease in size of supraclavicular mass to 1.3 cm (it was 2.8cm) with normal SUV activity. Decrease in size of hilar mass to 3.5 cm - was 5 cm. Also SUV down to 2.8. This is very good news and makes us happy. Not-so-good News: The scan showed that he has some pleural effusion on the right side measuring 6 cm in thickness. I am not sure whether this is a lot or not. This explains the awful dry hacking cough that he has had lately. Also his kidney function has deteriorated even more. Last week #'s were 35% function with creatinine level of 2.0. This week his function is 30% with ceatinine level of 2.3. Hemoglobin level is 8.8 - so he got a transfusion this afternoon and will have another one tomorrow. So the plan is to do no more chemo and see if his kidney responds favorably. He will have a chest XRay in 2 weeks to see if the pleural effusion is better or worse. Onc wants to see if maybe it is a side effect of the chemo. I need to go sit with him now - he is feeling lonesome. I will write more tomorrow. Sue Quote Link to comment Share on other sites More sharing options...
Donna G Posted July 29, 2010 Share Posted July 29, 2010 The masses shrinking is great news. Is he drinking plenty ? Flush , flush, flush. Prayers going up that kidneys doing better. Guess we have to watch that fluid in pleura Donna G Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 29, 2010 Share Posted July 29, 2010 Thanks for keeping us posted Sue. Mixed news is better than all bad news and this seems more positive than negative. Hope it keeps shifting in that directions. Judy in KW Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted July 29, 2010 Share Posted July 29, 2010 News not as good as we'd like, but tumor shrinkage is great. Best wishes and keep us posted. Quote Link to comment Share on other sites More sharing options...
beatlemike Posted July 30, 2010 Share Posted July 30, 2010 Prayer said that more good news will be coming your way! Quote Link to comment Share on other sites More sharing options...
shineladysue Posted August 1, 2010 Share Posted August 1, 2010 Hi Sue, Another Sue here and I want you to know that you both will be in my prayers. Good news on all the shrinkage. Hope there will be improvement in kidneys and effusion very soon. Know that we are out here praying for you and Kurt. Keep us updated, please. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
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