Deanna M. Posted June 12, 2003 Share Posted June 12, 2003 Hi all, Just wanted to post my mom's scan results. She finished her 6th round of Carbo and VP-16 a few weeks ago and just got her cat scans done. They show the cancer to be considerably shrunk to near nothing. Her spot on her pancreas is gone. It says something about there being some abnormalities in one of her adrenal glands but not on the others. THe doc says not to worry about that, she thinks it's nothing. The onc told her she could take a break from the chemo. She has to go in every 6 weeks to have her blood taken to check her #'s and has to be aware of symptoms. The onc said the cancer will most definitely start growing again and depending if 6 months have lapsed or not will dictate the type of chemo she may get. AFter 6 months she said she can get the carbo vp-16 again. If before 6 months she said she's got lots of tricks in her bag to try. My mom is very happy with this. I am just a little concerned b/c it isn't completely disappeared and we all know how fast this stuff can grow. Be honest with me, should I take her for another opinion? Or does this seem like proper protocol? I am very happy that my mom is doing so good right now, it's like night and day. She was so sick when she was dx'd, on oxygen, weak, fatigued etc. Now she's doing great. SHe handled the chemo really well, no nausea and just some fatigue at the end of the treatments. What do you guys think? Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted June 12, 2003 Share Posted June 12, 2003 just my opinion, but why leave anything there to regrow. why not nip it now so it doesn't have a chance to come back? I guess if my mom was facing that I would want her to go another round to get all she can out of there. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted June 12, 2003 Share Posted June 12, 2003 Deanna, Thank you for your reply to my post. That is great that your moms cancer is shrinking!!!! You said your mom just finished her 6th round of chemo. When I asked my Onc. if I could get any more than 6 ( I am only at 4 now) He told me that he was giving me the max dosage and the max amount of chemo rounds he could. He said nobody should go more than 6 rounds at a time. However I think you said they were going to wait 6 months and that does seems a bit long to wait. It may be that they have to wait 6 months to get the chemo poison out of her system before they pump her full of more chemo. That may be a question to ask. I am going to be checked every 3 months. Are they going to check her after 3 or 6 months? Hopefully the chemo still in her system will continue to shrink the cancer. My prayers are with you and your mom. David C Quote Link to comment Share on other sites More sharing options...
Peggy H Posted June 12, 2003 Share Posted June 12, 2003 Deanna - I know it seems very counter-intuitive, but this is pretty standard procedure. Most research shows that cytotoxic chemo drugs lose their effectiveness after a few rounds (I read one recent research study that said after 2 rounds) and then you're just poisoning people with no proven benefit. Sometimes oncologists will keep administering chemo as long as they are seeing a positive result. Then there's the concept of the "rest" period - giving the body time to recover & detoxify - so as to be more ready for the next battle. My sister always tried to convince her oncologist to keep going with chemo and he'd always want to "wait and see." It's very frustrating for her. Because, as you said, 4 - 6 months later there would always be some big, gross, scary, increase & spread to other organs. I guess doctors don't want to take a chance on doing something outside the standard protocol. Quote Link to comment Share on other sites More sharing options...
Guest Posted June 12, 2003 Share Posted June 12, 2003 Deanna, So happy to hear of the good news about the tumor shrinkage Now that the tumor has shrunk, is it possible to be operated on or radiated on? I'm so naive about all this stuff, but have so many questions. I guess I would ask those questions and if you didn't get an answer to possibly get a second opinion. I don't recall people going on with chemo more than 6 months at a time though. Get answers to all your questions and be vigilant Keep us posted, it was good to hear from you again. Anne Quote Link to comment Share on other sites More sharing options...
AnneBurris Posted June 12, 2003 Share Posted June 12, 2003 Oops, i didn't login, just wanted you to know the message was from me Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 12, 2003 Share Posted June 12, 2003 I assume your mom will get scanned in 3 months. That seems to be normal protocol. At least, my doc is scanning every 3 months. I would at least ask. But congrats on the clean scans now. xxxxoooxxxx to your mom. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 13, 2003 Share Posted June 13, 2003 Deanna I am one of those odd ball people who went over one year for chemo. Carbo/Taxol for about 6 months then the rest was Taxotere. The cancer, like your mom's, had shrunk to practically nothing and I was nervous about going off the Carbo/Taxol and my oncologist finally agreed to the Taxotere. Then, he finally took me off last Aug 2002 as the cancer was not showing anymore. I had become pretty exhausted by that time and also pretty worn down. Except for being on the oxygen 24/7, I am doing very well currently. I have scans every 2 months so we can stay on top of this. I think my recommendation would be to get frequent scans as it seems your mom's oncologist has brought her a long way. Good Luck and God Bless Quote Link to comment Share on other sites More sharing options...
mittlers Posted June 13, 2003 Share Posted June 13, 2003 Deanna, I'm so happy to hear that your mother is doing well. I feel like scans every six weeks for so for the first three months off chemo is a good idea. My mom had a scan at six weeks after chemo and we had some growth. I'm glad that they did not wait until three months. My mom has had 6 rounds of VP16/Carbo and will have two more since it worked so well before. I think your mom will be fine as it seems her cancer is gone more significantly than my Mom's was after six rounds. Keep us updated and congratulations on great scans!! Susan M. Quote Link to comment Share on other sites More sharing options...
Candy Posted June 13, 2003 Share Posted June 13, 2003 Great news about the tumor being smaller! It seems everyone is different from reading these posts. Hugh showed such a significant improvement after his last 3 of 6 rounds that the doctor wanted to do 2 more rounds which Hugh just finished. At first the doctor said that would definitely be it for a while but when we went last week and Hugh had gained 11 pounds and his blood counts were up the doctor said he wanted to reserve the option of having more after he looked at Hugh's scans next week. If there is an improvement he might do more. No improvement than Hugh will get a break. I'm with you, the thought of getting a break when the cancer is still there scares me silly. For the first time since this has started Hugh said last week that he feels the need for a break soon. He has tolerated chemo amazingly well but he is sick and tired of being sick and tired. Katie - your father's story makes me feel much better about stopping while there is still some evidence of the cancer! Quote Link to comment Share on other sites More sharing options...
debbie412 Posted June 14, 2003 Share Posted June 14, 2003 I totally know how you feel because my mom had sclc with mets to adrenal. After 6 weeks of chemo the adrenal disappeared but the right upper lobe still had a 4.2cm tumor. She did two more rounds of chemo and then had radiation. This last scan still showed 4.2 cm and a little activity (but no tumor on the chest. She too is on a 2 month break and i am scared. I just realized that the important thing is that there has not been any change and it has been 4 months since chemo. She feels great and that is all that matters. I know you have a two year old and that is the real healing medicine for grandma! I have twin 2 yr olds and a 7 month and we do things at least 4 times a week and she has more energy than me. As long as your mom feels good that is all that matters. Miracles do happen. I believe the mind is sometimes more powerful than any medicine. Please keep me updated. I will pray for her. Quote Link to comment Share on other sites More sharing options...
cathy Posted June 14, 2003 Share Posted June 14, 2003 Hi Deanna, I dont really have any advice for you because my dad probably wont ever receive chemo but I just wanted to congradulate your mom, and how wonderful it must be for her to feel good and to really enjoy her beautiful grandchild.. Quote Link to comment Share on other sites More sharing options...
Guest Jonathan2 Posted June 14, 2003 Share Posted June 14, 2003 Hi , I have been researching sclc and its medicines for nearly three years and while I have heard of a break and rest period, I have never heard of it being more than a month. Your mom has come so far and it seems to me like that cancer is ALMOST gone and out of there! What wondeful news! I am sure that your mom has worked very hard to get to this point. It also seems like her oncologist is being very nonchalant and passive, without even considering the possibility that she can be fully rid of this disease. Seeing as chemo is hard work and her life is at hand here, I would get more opinions until I found someone who is willing to work with her until the cancer is GONE (not visible; remission). A 2-3 week break is enough in my opinion, and that seems to make a lot of sense. I alos took the time to contact my mother's former oncologist who is an expert researcher and physician at the University of Chciago Hospitals' Center for Advanced Medicine.. he said that anything more than a month would be abnormal for a small cell patient, because sclc grows very fast and as soon as the chemo is gone, it will begin to grow exponentially. He said that he can guarentee that before six months is up, the cancer will begin to grow. He said switching to another drug would be appropriate, until the cancer is gone and in remission, seeing as your mom has had more than 6 courses of cis/carboplatin and etoposide(VP-16). Once a patient has had between 6-8 courses of a chemo agent it usually becomes ineffective in shrinking a tumor. So other drugs like taxol, CPT-11, topotecan would be better than continuing the old regimen. But yes, I would find someone who is willing to do something until the cancer is gone. That should not be hard to do. I would print these responses you are getting out so that mom see's them and understands how important it is that she continues this fight, and how passive and nonchalant her oncologist is being. I wish her and you the best! You will get rid of it! As the president said on TV when addressing the United States regarding the September 11th attacks.... "We will not tire. We will not faulter. We will not fail. " I see this and all cancer this same way. Sincerely, Jonathan Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted June 18, 2003 Author Share Posted June 18, 2003 Thanks everyone for your responses. It really helps to know that there are others that were given a break with some evidence of cancer still there. I just wanted to clarify that my mom will be checked every six weeks, not months. I don't know when the next scans will be done, I am assuming that will be discussed at the next appt in 5 weeks. It seems like different docs have different ways of approaching the cancer. I am praying that the cancer stays dormant for a very long while and if it does come back she's going to have plenty of strength to kick the hell out of it!!!!! Praying for you all. Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted June 21, 2003 Author Share Posted June 21, 2003 Just wanted to add that I spoke to my mom's onc about continuing chemo. She said she wouldn't continue with the same drugs b/c they won't do much more after 6 treatments, according to studies. If we did continue with chemo, it would beat up her body physically and would also limit the chemo drugs we would be able to use down the line. My mom's feeling great right now and is planning a trip to visit her family in Canada. My husband and I will be meeting her there at the end of her trip to take her home with us. So I think this is all good. When my mom first got sick, she was so bad that we never thought she'd make it to Canada again where all of her family lives. So that is such a huge blessing that she's able to go!! THe onc says she'll probably start chemo back up in the Fall, if she had to take a guess. THanks for all your opinions, I appreciate it!!! Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted June 21, 2003 Share Posted June 21, 2003 Deanna, This sounds wonderful. I'm so happy for you and your mom. I'm getting a break next month too and going to visit my family. I hope you all enjoy the vacation. I know I'm sure looking forward to the break. Jenny Quote Link to comment Share on other sites More sharing options...
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