Anaplastic Large Cell Lymphoma

Question: Signs of and progression of death from large cell anaplastic lymphoma? Recurrence of fast-growing lymphoma....no treatment yet due respiratory infection. CHOP chemo planned. See it spreading.....what are signs of impending death, timeline, and progression...either after a chemo or without? Would like someone's actual involvement w/patient. Just want to know what to watch for and prepare for as we go the journey.

Answer: This is a very difficult question to answer since every person progresses differently. It would also be helpful to know where your lymphoma is. Progression of the disease and the symptoms it causes depends on what organs it affects. For example, if you have a mass in your abdomen which extends to your liver, you might see symptoms like easy bruising or a condition called ascites which is a fluid buildup in the abdomen. One common symptom of lymphoma is edema, or swelling, which is usually seen in the limbs due to the lymph's inability to pass through the blocked lymph channels. Increasing fatigue is obviously another sign of failing health, but of course it is also a side effect of many treatments. Again, loss of appetite will occur, but this symptom can be caused by many factors which are not necessarily indicative of impending death. Ask your doctor to be frank with you if you want a specific time line, but know that he/she can only give an educated guess and that there is no way to be sure exactly how and when your disease will progress. I would also recommend hospice care if and when there comes a time when there are no more feasible treatment options. I found quite a lot of information about the signs of dying online, and one brief list at the following: http://www.statesman.com/health/content/… I wish the best for you and your family.

Question: Survival rate for Non-Hodgkins Lymphoma in a 17 year old girl? More specifically Anaplastic Large Cell Lymphoma Stage 3. I'm just curious, my friend (she's 17) was diagnosed. She had a different kind of cancer about 5 years ago. Does her previous cancer have an effect on her survival chances? Thanks.

Answer: Although this is a high grade lymphoma, which means it spreads quicker than other types of lymphomas, it is very responsive to chemotherapy, even in stages 3 and 4. The 5 year survival rate is between 80-90%, which is great in comparison to other cancers. Wish you and your friend all the very best

Question: How do they know what kind of lymphoma you have? Sorry I keep bombarding this site but I need answers. My best friend has a cancer scare and we think it's lymphoma and I am worried because at first it seemed like if she did have it she would be okay because she's only 17 but then last night someone asked a question about his 17 year old girlfriend dying of a Stage 4BE Anaplastic Large Cell Lymphoma so now I am freaking. Idk if she for sure has cancer yet but I'm scared. Here's the rundown: she's always been super skinny cause she's a dancer and athethic but she's like become even skinnier lately (00 skinny). But she ran a marathon in May though so I'm hoping that's why. She's been sick alot this past year - nothing serious but like lots of colds and stuff. Last year she was in the hospital for two days cause she had really serious infections (idk whole deal but it happened like after the flu and wisdom teeth getting removed) and they did tons of tests then and she didn't have cancer then. She doesn't ever sleep cause she gets bad night sweats, but she's had insomnia forever and likes to paint at night. All this has been going on for like months but it seemed like there was an explanation for it all. So after reading about lymphoma it seems like she's got all the symptoms of it but I mean they could just be other stuff. But her uncle died of non-Hodgkins lymphoma when he was 27, so that's why I'm really scared. I am just trying to get answers. She won't talk about it much. My mom went with her to the appointment on Monday cause her parents are out of town but they didn't tell her anything. They did give her a referal to a pediatric oncologist so that's why me and my mom are so upset. I just need to know this stuff. She's acting like nothing is wrong. She hasn't even told her boyfriend or her parents and she wont let me talk to anyone about it. She's just like whatever. About cancer!!!!!!!!!!!!! This whole thing started because a masseuse found a large lump under her armpit. She's already had blood tests and now they want her to get a biopsy done. Thank you denise dd. That kinda like made me get a grip. Panda, I'm so sorry about your son. Idk why but my mom was the one who said she thought it was lymphoma. She said Dami was in there with the doctor for a long time so idk maybe she did tell her everything but she won't talk to anyone about it. All my mom knows is that she was refered to a pediatric oncologist and got this form to take in for a biopsy cause this nurse near the reception area gave her the forms and my mom came up and saw them. Idk know if her doctor tried calling her parents. Nobody is at her house right now. Her dad is on his honeymoon and she thinks it will ruin it if she calls him. She refuses to and told me i can't call him. Plus she's supposed to go to China in two weeks and she's afraid she won't be allowed to go if her dad finds out before then so she wants to wait til she gets back in mid August. My mom doesnt have forms for her. The school does but Idk if my mom could get them. Thanks again to you both Kira Idk what you are talking about. I never said that my mom signed any papers for her. My mom works beside the doctor's office and just went with her to the appointment because my friend gets faint after blood tests. My mom didn't go into the room with her. She sat in the waiting room the whole entire time and when my friend came out she came up to her and this nurse gave my friend the forms the doctor wanted her to have - the referal and this thing for a biopsy. The doctor's office already had consent from her parents like on file just for normal stuff so they didn't need a signature to see her. Her own parents have to sign off on the consent forms for the biospy and for her to see the new doctor. My mom can't do it.

Answer: Lars, Your friend’s parents need to know what is going on right now. Your mother should call them ASAP. Did they leave a signed document with your mother allowing her to okay medical treatment? If so, your mom can start the ball rolling. I don’t mean to scare you more than you already are, but I deal with cancer everyday and I have to tell you I would be VERY surprised if your friend doesn’t have lymphoma. Freaking out doesn’t help anyone. Getting this taken care of as soon as possible does. Cancer is serious and people, even young people, do die from it. At this point there is no way to know what her prognosis is it is just too early to tell. You have to take one step at a time. I don’t want to sound mean I understand what you are going through. When I was in high school one of my friend’s died from lymphoma – we were only 16. Doing the biopsy will tell the doctors what kind of lymphoma she has. From there she will need a CT and probably a PET scan. Once this is done they will know the stage. Please have your mother get a hold of her parents. EDIT: I understand you want to be a good friend, but sometimes that means you have to go against your friends wishes to do what is right. Believe me his honeymoon will matter very little to her father if something should happen to her. She will most likely have to put off her trip to China, but does that really compare to her life? Without treatment her symptoms will only get worse and the cancer will spread making it harder to treat and save her. Do you realize something could happen while she is in China? Do you know what medical care is like there? She should not be in that position. You sound like an intelligent girl I’m sure you know right from wrong. Her father needs to know.

Question: Cancer question...doctors only please? I recently noticed a lump (a couple of cms wide) in my left breast. It has now grown to a few inches and is located in the lower portion (inner and outer quadrant) of the breast. I also now have a small lump in the right breast. I saw a breast surgeon and he did an ultrasound, which came back negative. He feels that it is just thickened fatty tissue and refuses to do any further testing. My history: I am a 24-yr old female who recently underwent chemotherapy for a non Hodgkins B cell lymphoma (anaplastic large cell). I had masses in my neck and chest and am now in remission. I was put into medically induced menopause during the chemo, but now my estrogen is back and my periods are regular. My oncologist doesn't think that the lymphoma has spread to my breast, because this is very rare. I have a follow-up CT scan of my chest scheduled in a couple of weeks. Will this be able to detect anything in my breast as well? Do you think I need further testing? Thanks.

Answer: It sounds like everyone is dropping the ball. Who referred you to a surgeon and why? I don’t know why they would do that without an ultrasound first. The CT is to check the status of your lymphoma it would not likely show a breast mass. It isn’t the best test for this. The fact that the mass has grown means you need further testing. It is mostly likely a cyst or fatty tissue, but that is not really the point. Make sure your oncologist has a copy of the ultrasound report and have him or her address the issue and explain their reasoning for the recommendation they give you.

Question: My girlfriend has 3 months to live (max).. how to act? My girlfriend has Stage 4BE Anaplastic Large Cell Lymphoma. It's a type of blood cancer, that has now spread to some other organs. She just had surgery to remove her spleen, and she's been getting rounds of chemotherapy. The doctor recently told her and her dad that she only has 2-3 months left. We've been best friends for 11 years, but only started dating in May of this year. So I was in denial for the past week, but now I want to make sure that she has the best 2-3 months ever. But I don't really know how to act. I don't know if she wants me to talk about it or not. I don't even know if she'll want to do anything. We're only 17. Could you guys give me some ideas?

Answer: Oh Nolan, you sweet boy, I am immensely sorry. When I was fifteen one of the loveliest, liveliest people I've ever known and someone who has permanent residence in my heart until the day I meet my own death passed away after a very painful and prolonged battle with Lupus. The disease also took both of his brothers when he was younger, and at times he spoke about how own death during his youth was inevitable, but still when he took a turn for the worst he entered into a stage of denial. Last year I read a book titled "On Death and Dying," about the five stages of grief and was astonished at how incredibly accurate it was. Looking back over Cole's last few months of his life, I could very clearly define his stages of denial, anger, bargaining, depression and finally, acceptance. I also realized that I experienced all those emotions in the aftermath of his loss and those of the four others I lost that year. It was my first experience with grief, and it was intense. It's awesome that you want to support her, but you also need to seek support for yourself. Take her hand and be attuned to her needs so that you know when you should lead her, and when she should be leading you with the path she's on that day. After the grim reality sets in and she is no longer in denial she will most likely be angry. Very angry. Possibly furious. At everything, everyone, at the universe as a whole and maybe even God if she believes in Him. Don't try to tell her how to feel and give her platitudes. This freaking sucks, and we all know it. It's cruel and unfair and hideous to be dying at 17, and she has the right to be enraged. Just know that if she loses her temper with you that it doesn't mean that she doesn't love you, or that she doesn't appreciate what you are doing for her. Let her get out her aggression however she choses, and perhaps even suggest outings like paintball or taking a kickboxing class. If you do something like that, though, keep it short and plan something very mellow afterwards for her to rest. If she is a painter, singer or dancer, encourage her to use her emotions in her art. It's what I do; art is like my friend and my therapist. After she's angry she'll be most likely be depressed, and just let her feel that as well. Don't add to it with pessimistic comments, but don't be too Pollyanna-ish either. Never criticize her for expressing her feelings, whatever they are. Just keep showing unwavering devotion. The accumulation of sweet, simple actions such as running an errand for her or creating a playlist / imix of songs you think she'd love, sending her a link to funny video clip, and bringing her a bag of her favorite candy can be more meaningful than the grand ones. Every time I met up with Cole I'd bring him a Kit Kat bar; I kept a stock of them in my refrigerator just for him. Encourage her to make a list of things she'd love to do, and find creative ways of helping her to fulfill them. For example, maybe she's always dreamed of going to Paris, but that probably isn't realistic so instead you could show her a film set there like "Amelie" and make her some crepes with Nutella and strawberries to munch on. You could have a nighttime picnic in your living room by moving furniture out of the way and putting a blanket down, hanging up Christmas lights and lighting some candles and playing some Debussy. Suggest outings that will allow her to redirect her focus for a few hours and soak up some joy like a visit to a museum or the aquarium, a waterpark, a day trip, a movie (Away We Go is a must-see) or just dinner and a walk. Check out the event listings for your town to find out about cool things she would love. In the summertime many places in LA have free concert series, movies in the park, street festivals and the like, and there are probably similar events in other towns. Have your own film festival one weekend, and watch the movies while eating homemade smores or cupcakes. I actually found a movie called "All That Jazz" from the 70s to be oddly helpful because it talks about the five stages of grief, but is still so vibrant. It's the movie that inspired the more recent "Chicago." Make your own little video for her if you can; it doesn't have to be elaborate and filled with special effects. It doesn't matter if you sing off key or are a lousy photographer or piano player or whatever. It's the act of creating something just for her that is meaningful. Just tonight I made a little video for my grandfather who is sick to bring him a bit of encouragement and a smile. (You're welcome to check it out if you'd like: http://vimeo.com/5519968 ) I'm sure you could make one for her. I imagine she doesn't look the same as she did when she was healthier, so find little ways to help her feel pretty. (There's a difference between being pretty and feeling pretty). Offer to paint her toes for her and just laugh at the results, then treat her to a pedicure the next day to get them done properly. Buy her a bottle of perfume or a lovely dress if you can afford to do so. Tell her that she's beautiful. Your level of intimacy with her is just that - intimate, and so I won't advise you on it except to say to simply do what feels natural for your relationship. Show her plenty of affection, but don't force it or feel like it needs to be elaborate. I love it when my boyfriend lifts my hair and kisses me on the back of my neck and lightly runs his fingers up my arm. Write her love letters and actually mail them to her rather than sending them via email. There is a simple delight in getting personal mail. You can write your own, or simply copy some of the famous ones others have written or write down some poems like "i carry you in my heart" by ee cummings. http://www.youtube.com/watch?v=-8Nxs0alN… I apologize for the length of this answer; I just wanted to try to help as much as I thought I could. We don't know each well, but from our few exchanges and this question I think you are a truly lovely person, and I will keep you both in my thoughts and prayers. ((((Nolan))))