I went for my results yesterday at M. D. Anderson, I am still in remission. Won't have to see the doctor again for 4 months, and will have a PET Scan, instead of a CT scan. I hate drinking that stuff, it's amazing that no one has thought of a way to have people take a pill, and light up your insides instead of this nasty drink. We are very excited! Hummer55
Hey Hummer,
YEAH REMISSION!!!! Hope you had a great 4th! Congratulations again on the remission. I think I may have told you that on another post but it feels good to say it again! I'll have CT scans this month for my recheck and I agree with you. I hate drinking that stuff. With the PET scans, they can inject the tracer in you. Why can't we take a pill (yuck). Oh well, a small price to pay for progress, right? I'm anxious to get these test done. I'm just waiting on the oncologist office to call me with the date. I see him again in August. I've been NED (no evidence of disease) since February. I guess we always get nervous when it is testing time again. I'm just so ready to get on with things. Did you have side effects after your chemo? I'm still dealing with issues. I think we've talked about a few but you know that "chemo fog". That stuff seems to linger somewhat. I hope you are doing well. Take care and I look forward to hearing from you.
Joy
Hey Joy, Thanks for the cheers! Have you had a PET scan yet for your lymphoma? This will be my first. I am excited that I won't have to drink that stuff, it is so disgusting. I get more anxious about that more than anything. I don't think I told you this, but I am allergic to it, as soon as I finish drinking it, I have to run to the bathroom with diarhhea even before the test is started. Then, they give me the barium in my rectum, to make sure the lymphoma isn't lurking about in there, so when I am in the machine, and they release that stuff, I have to hold everything in so I won't go on the table. It is terrible. I know a small price to pay for good results, but going on myself having this test, that is totally embarassing. Then, I ask them to give me an early a.m. appt., because if they give it to me late, we have to drive in Houston traffic back to my home in Spring, and that's not a fun thing either, once again I have to hold it in. One time, I wore a diaper, a depends, just so I wouldn't be freaking out about it, it's embarassing. The only side effects I had was ringing in my ears, and if I moved too fast, I would get dizzy. I also had a heaviness in the middle of my chest, I suffer with GERD and have a hiatal hernia, so that felt weird. There were some taste problems going on, taste changes, I didn't know at times what to eat, but I considered myself very lucky for not having any major diarhhea and throwing up. All in all, I thought I did great with chemo, knock on wood, but I thought I handled it very well. We had just lost my dad to colon cancer Dec.06, and 3 months later, I was diagnosed with NHL. I felt so bad having to tell my family that we are going through another cancer drama. My parents were living here with us from Katrina, they lost everything, and he had been diagnosed like in 2002, we moved to Texas 2003, first time ever being away from my friends and family. My mom has CLL, but it doesn't need to be treated right now, it's fine, but I think I read somewhere that if there is that kind of leukeimia in the family, someone can get lymphoma. We didn't have any time to grieve my dad being gone, my mom just took over taking care of me. I am on so many prayer lists, and she says so many novenas, we are Catholic. She watches the mass everyday on TV. It was good talking with you Joy, hope the effects won't be too bad for you. I know one thing, my energy has not come back though. I get upset with that, and I have gained weight. Did you lose weight, or gain weight? I want to go to my gastrointerologist, and let her scope me, make sure things are okay inside of my digestive tract, my stomach and midriff stays constantly bloated looking, I am more obsessed with that then anything. You take care, and keep me posted! Sharon
Hi Sharon,
Good to hear from you. Wow, you guys have been through it. Sorry to hear about your dad but I'm also glad you have your mom there for you. Katrina was a catastrophe. My family lives in Louisiana, outside of Baton Rouge. They didn't have to evacuate. Things still are different there no matter what folks say. I live in Dallas-Ft. Worth area and have been here about 21 years. It's awful that you are allergic to the barium. What an ordeal for you. I do okay with it but about an hour afterward, I have to get to a bathroom but it's nothing like what you deal with. You are right though, I guess it's a small price to pay for making sure we stay in remission.
I have had PET scans before and my last scan in April was a PET but the next set the oncologist wants to run will be CT's. He said we would alternate testing. Eventually I'm thinking that I'll not be testing so frequently. This set will have me over 3 months from the last test. I did gain weight after I finished chemo and really quickly! It has been tough. The oncologist referred to it as "Steroid Rebound" and me being put into menopause from the chemo. I told him no matter, it sucked! He doesn't know how to take me sometime with my strange sense of humour. I'm going to the gym and using the elliptical machine to try to get my cardic system back in shape. I think I told you that I'm having joint pain & swelling along with neuropathy and the oncologist suggest water aerobics. Unfortunately I'm dealing with an itching problem down below and I'm afraid to get into the pool till they get it cleared up. I see the gyno this week to reaccess me. They aren't sure what's going on and basically are guessing at this point. I'm going with the flow while we try different things to get rid of this awful nuisance. We'll see what happens. You learn really quickly how to have patience. I've been blessed with some really great friends to help me and my daughter lives with me but is in college. She's a busy girl but there if I need her. I try to do as much for myself as I physically can. The fatigue still gets the best of me sometimes. It makes me wonder how long that it will last. Everyone seems to have a different story though. We all are unique individuals and so is any type of cancer. It all affects each of us differently. The most unique fact is that cancer survivors have each other for support. Someone who has been down that road to confide in. No one really knows where you've been and where you are going physically and emotionally I feel, but another cancer survivor or patient. It's great to have that family of support available. I hope you have a great day and it's great to chat with you. We'll talk again soon.
Blessings to you,
Joy
Joy, My mom and I go to aqua classes too, and boy, sometimes I come home and have to go and lay down. It is quite a work out, and I get so aggravated that I exercise and then have to rest so much after. It's like I am defeating it's purpose. We were going 3 times a week, we had alot come up in May, so we missed like 3 weeks or so, we are now getting back to our schedule. We will keep in touch, Sharon
Hi Sharon,
How are you doing? Are the aquaclasses going okay. I have a set of CT Scans scheduled for tomorrow morning. We are looking for more NED (no evidence of disease) results again. Of course I won't get to see the oncologist until 8/15 since he is on vacation. But all in all everything my way is going okay. When do you test again? How are the fatigue levels? Mine are good some days and some days not so good. The neuropathy is still a bit of an issue but hey, I'm still here! Blessings to you and your mom. Take care and keep in touch.
Joy
Hey Joy, I won't see my doctor again for 3 more months. I had just ended my every 3 months testing, and I will have a PET scan. Fatigue levels not too bad right now, of course, we been having some weeks when we haven't been able to go to classes. This morning I have an appt. with my cardiologist, and tomorrow with my gasterintonologist. My last CBC's showed my cholesterol a bit elevated, I hope I won't need to take another medication for that. It is a regular check up for the gastro, just wanted to go see her. I really would like her to do an endoscopy, to make sure everything is all right with the digestive tract. I suffer with GERD, and when I was having my chemo, right in the middle of my chest would bother me. And then I have the abdominal and midriff bloating, she thought I had IBS, so we will see. I feel better about things getting checked out. I'll let you know how things go! Thanks for the blessings, and right back at you. Let me know how things go for you too, take care, Sharon
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