photokakar Posted December 21, 2008 Share Posted December 21, 2008 Hi, I posted on this site back in Oct and have still been keeping up with reading, but not posting. I thought I would give an update on how my stepdad is doing...last I posted, he had been put back into the hospital with a fever after his chemo. He was able to go home shortly after being admitted, and once they got his fever under control. It seemed to be an infection with his mediport. He has since gotten his 2nd and 3rd round of chemo and is so very weak. After the 2nd round, he was weak for 2 weeks straight and barely able to walk around because of his legs being so weak...then, in his 3rd week after treatment, he was up shopping at the store and driving...then he had to get his 3rd round of chemo and it hit him all over again...the weakness, and soreness. His WBC were down this time and he had to get a blood transfusion...He also got another infection this time, but nothing major and was just put on oral antibiotics. He is still weak from this last chemo..its seems that each chemo hits him harder...is this normal? So, my mom and he had an appointment this past week to just check in. His DR told him that he is only prolonging his life and when the chemo is over, the cancer will come back. I was so pissed that a DR could just tell them this without even seeing any scan to see what the chemo has done. Has anyone ever had this happen? It seems the Dr is very pessimistic and it always gets my mom so upset and she is trying so hard to be strong. My stepdad has been doing so well (after the initial sickness of chemo wears off) and here the Dr tells them this just a week before Christmas. Now, my mom has been so down and sad and Steve, my stepdad, is saying that after the 4th round (which is supposed to be his final before his scans) if nothing has changed he is done. The chemo has been terrible...and Im sure that is the case with any of you on it. He feels so bad and weak after an infusion. The chemo makes him so sick and I wonder if he will ever get better, and then it happens...he is up and walking and eating normal and then ....he has to go get another one. What a vicious cycle...but I know its worth it in the end if it kills the cancer. They both, have been so upbeat and optimistic through this whole thing. When he first started chemo and I first posted, he could barely walk with such bad pain in his back...now he is walking around (with a walker because of his weak legs) and he is going out and getting around. Now, to hear such negative news, it just made us all so sad again. He seems to think that something good has happened becuase he is able to get around now and is on hardly any pain meds...but when your doc isnt hopeful, how can you be?? He will be getting his 4th chemo right after Christmas and then he will be getting all new scans and PET scans to see what the chemo has done to the tumors. We are praying for shrinkage...but the Dr. made is seem that even if it shrinks, it will come back full force. Thanks for letting me vent. I have been just so upset and now, even more so. The holidays are here and my mom cant help but to wonder if this will be our last Christmas with him and Im trying to get her to not think that way. I believe in miracles and prayer. Please pray for us and for my stepdad...he is just too wonderful to leave us yet! Thanks, Jenn Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 21, 2008 Share Posted December 21, 2008 Jenn, I know how hard it is but please try to block out the negativity of the doctor. I recently came across a very official looking staging and treatment article on cancer.net following a link offered by Dr West who I hold in the highest esteem. It sent me into a mini-tailspin. I immediately emailed Ned as I usually do because he's so smart and level-headed. He validated my response and then I tried emailing cancer.net (after upmteen tries the webmaster gave up) and the parent organization (can't remember the name, the link was on cancer.net). No one has responded. I'm so outraged because this is the kind of thing, I believe, that is behind doctor's responses like you refer to. I've put off giving public space to this because I didn't want to tant the site with negativity or scare people. After reading another post like yours, I think I will put in on the site somewhere together with my email. Perhaps someone out there can help me address this in a manner that gets some response. Jenn, these kind of comments do not allow for human variables and run counter to what we survivors here all know: THERE IS ALWAYS HOPE! Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted December 21, 2008 Share Posted December 21, 2008 Thanks for the update Jenn. Yes, the effects of chemo definitely get worse after each cycle, it is progressive. But I too think it is a good sign that he does bounce back and would think that a good sign about its effectiveness. Darn those doctors. So many of them do not know how to say things properly. We all know this is bad in our hearts and do not need it spelled out to us like that. When words come from a doctor's mouth it makes it hurt even worse and can have a huge negative impact on our emotional well being and outlook. And he has no idea how effective the chemo was. Sounds like a case for giving a doc some diplomatic feedback. I don't think most of them realize what an impact they can have on our spirits needed to fight this thing. Lots of prayers for your step dad. Please keep us posted. Sandra Quote Link to comment Share on other sites More sharing options...
Wendy Posted December 21, 2008 Share Posted December 21, 2008 Jenn, I am so sorry to hear about your stepdads struggles. The chemo can be so tough and just does a number on your stamina, strength and spirits. I hope that once chemo #4 is done, your stepdads strength will be back quickly. Try to remember that the docs really can't predict how everyone is going to respond to treatment. I was told 3 years that I probably stay healthy for another 2 years......well I am 1 year past that and I feel pretty darn good today Many prayers to your family that better days are ahead. Wendy Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 22, 2008 Share Posted December 22, 2008 His doctor told him that he is only prolonging his life... Hi, Jenn. It really burns me up too when doctors are careless with their choice of words. With just a little extra effort they could explain things in a way that would save families a great amount of anguish. It's great to hear that Steve's back pain is not bothering him so much now (the radiation must have helped), and that in spite of some problems with chemo he's managed to bounce back reasonably well. I hope the next scans show good shrinkage of the lung tumor. Do you know what chemo drugs were used for the 4 cycles? Did the oncologist mention any options for additional treatment after the scans are done? I've been on one treatment or another for the past 28 months and I'm feeling pretty good now, certainly better than I did at diagnosis or during those initial months on the "hard" chemo. When my current treatment stops working, which it probably will eventually, I'll switch to something else. Truthfully, I don't consider my cancer a death sentence, but as one more chronic condition that I'll need to deal with for the rest of my life, just as I've been dealing with a couple of other incurable maladies for many years. So I think of my cancer treatment as prolonging my life, but without the "only." A lot of docs may not see the difference a word makes, but I think most of us on this side of the stethoscope do! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
photokakar Posted January 27, 2009 Author Share Posted January 27, 2009 Thank you all for your kind words and support! I know Im not very good about coming on and updating... 2 weeks ago we got GREAT news that my stepdads tumors (the main on on the lung and then the one on the hip) had "substantial shrinkage" as the Dr put it. We were so excited, because the chemo has been hell and it's nice to know that its been worth the hell!! And of course, excited that the tumors had shrunk. The lung tumor shrunk from golf ball size to a marble size!! Anyway, when he got the news, he had already been having some leg pain, but thought it was maybe the end results from the last chemo, or mayby atrophy from not moving around much from chemo....well....just about 4 days after the good news, he ended up in the hospital because he couldnt move his legs at all because of severe pain. Low and behold, they do a MRI and find a mass on the other side of the hip....UGGGG....HOW COULD THEY MISS THAT?? He had just had scans done and found out that the tumors shrunk...why couldnt they have seen this one? Anyway, he is now still in the hospital and getting immediate radiation to the new mass they see. I dont know size or even how many he will have to get...but he is pretty drugged up again for the pain and it makes me so upset. He was doing so wonderful and was finally feeling better,...eating so well ...gaining weight again..etc and now this. My mom is just dealing with it...not showing much emotion...and that worries me. She stayed here this weekend with my family (my daughter had minor surgery for adnoids and tonsils) and she seemed to have fun here. She says we are great at getting her mind better:) Thats what kids and grandkids are for:) So, instead of celebrating the shrinkage, he is back to the beginning with this new tumor. He is on the tarveca now, and will be until the next check up in 2 months. He was so happy that his infusion chemo was over and then here he is, back in a hospital bed and in severe pain. Mom said tonight that they are hoping that this radiation will shrink the tumor...and they are saying that because this tumor wasnt radiated before like the other 2, that may be why its just now showing up. I just dont understand because can 2 tumors shrink so much and then another one grow all at the same time while on chemo??? I didnt think that could happen! We are praying for this tumor to have the same results as the last ones...just so darn frustrating!!! Jenn Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 27, 2009 Share Posted January 27, 2009 I just dont understand because can 2 tumors shrink so much and then another one grow all at the same time while on chemo??? I didnt think that could happen! Yes, unfortunately it happens. When we start a chemo program, any cancer cells that are not killed outright start to mutate in an attempt to survive that particular chemo. If these mutated cells take hold somewhere else in the body, the tumor growing there may be resistant to that chemo while the older tumors are still vulnerable and continue to shrink. In my right lung, the original tumor appears to be dead and is probably just scar tissue, but now a few nodules have appeared elsewhere in the lung and are starting to grow. I'll find out Tuesday if they've grown enough for me to need a change in treatment. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
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