http://forums.lymphoma.com/blog.php This is a discussion forum. en Sat, 31 Jul 2010 23:13:33 GMT vBulletin 60 http://forums.lymphoma.com/images/misc/rss.jpg http://forums.lymphoma.com/blog.php http://forums.lymphoma.com/blog.php?b=45 Mon, 26 Jul 2010 04:10:55 GMT Where to start??....... I am a (almost) 29 year old female who was diagnosed with hodgkins 2 days before my 1 year anniversery. People tell me and my... Where to start??....... I am a (almost) 29 year old female who was diagnosed with hodgkins 2 days before my 1 year anniversery. People tell me and my husband that it's because we had just furnished a nursery and were trying to have a baby, maybe it is. Things happen for a reason right? All I have been thinking about is why me? What have I done to deserve this when I was finally happy? My husband says it is useless thinking and that there is no one to blame and to focus on healing and getting better so we can take our trip. He has planned a two week clean scan celebration vacation that is long overdue but I have only had one treatment as of this post. My second one is tomorrow. I was a lucky one I guess in that there really were no side effects that I felt other then no appetite and extreme fatigue. I mean it tired me out just to walk five feet to the door to let my dogs out for crying out loud! But I think if things are like this for the next six months maybe I really can get throught this. People at work ask me how I am doing and when I say ok they don't understand my point of view/ acceptence of what I have. It's cancer for crying out loud... I tell them it's not so bad and that it could have been worse, it's kinda like winning the cancer lottery... Hey I'm a winner!! Writing is supposed to help but I feel like I'm just kinda rambling. My husband was so angry at first he is the type to do and get done he didn't understand why it was me and not him and why couldn't he just take it from me... I think he is doing much better now though, we have a great network of friends who are willing to let him take out some frustration on them (raquet ball). I still feel like I am all alone though. ]]> Brige http://forums.lymphoma.com/blog.php?b=45 http://forums.lymphoma.com/blog.php?b=44 Mon, 28 Jun 2010 20:42:44 GMT I am in remission from Hodgkins Lymphoma stage 3b for 2 years now. I still go for regular scans every 6 months now. Just recently I started itching... I am in remission from Hodgkins Lymphoma stage 3b for 2 years now. I still go for regular scans every 6 months now. Just recently I started itching again and to top it off I have thrush agin and my mouth is sore. I am not taking meds. My WBC is always low everytime it is checked for the last few years. One time he gave me antibiotics and it brought it up. What's up with this? Any takers? ]]> rob821 http://forums.lymphoma.com/blog.php?b=44 http://forums.lymphoma.com/blog.php?b=43 Thu, 03 Jun 2010 13:35:39 GMT I was diagnosed in January 2009 with stage 2A nodular sclerosing Hodgkins disease, at the time I was 3 months pregnant. I did 6 cycles of ABVD and... I was diagnosed in January 2009 with stage 2A nodular sclerosing Hodgkins disease, at the time I was 3 months pregnant. I did 6 cycles of ABVD and was told I was in remission (which later I found out was not true). In October 2009 my scan showed new growth so I then did two treatments of ICE in preparation for an auto stem cell transplant. I had my transplant in January 2010 and everything went great. Unfortunately I relapsed 3 months later. Right now I'm back on chemo GND and debating whether to do another transplant or try out some other drugs for now. If anyone has an input I would greatly appreciate it. ]]> Samantha http://forums.lymphoma.com/blog.php?b=43 http://forums.lymphoma.com/blog.php?b=42 Sat, 29 May 2010 14:03:31 GMT This is a great way for people across the country to have their fundraising efforts have a big imipact. Join the “Out For Blood” Team for the... This is a great way for people across the country to have their fundraising efforts have a big imipact.

Join the “Out For Blood” Team for the North Shore Century Bike Ride, starting in Evanston Illinois on Sunday, September 12. Every dollars raised by riders will support lymphoma, leukemia, and myeloma research. This is a non-competitive, family friendly ride where riders can choose from a variety of scenic routes up to 100 miles. Flexible morning start times. Chicago Blood Cancer Foundation is underwriting the registration fee for the first 50 riders committed to raising money for blood cancer research who register on-line at http://outforblood.kintera.org.

Non-riders and people across the country are encouraged to participate by forming “Virtual Vampire” teams on line. Those raising $100+ receive a t-shirt and those raising $350+ also receive the coveted “Out For Blood” Jersey.

Chicago Blood Cancer Foundation is a 501 (c) (3) not-for-profit organization led exclusively by volunteers impacted by blood cancer and committed to curing lymphoma, leukemia, and myeloma and supporting individuals and families impacted by blood cancer. Visit: www.chicagobloodcancer.org or call (888) 792-9992 and join us on the superhighway to curing cancer. ]]> goingstrong http://forums.lymphoma.com/blog.php?b=42 http://forums.lymphoma.com/blog.php?b=41 Wed, 21 Apr 2010 02:37:50 GMT After just one cycle of ABVD (2 treatments), my PET came out clean, I think. I'm waiting to hear from the study physician so I know for sure that I'm cutting to 3 cycles total. If that happens, that will mean that I'm already half way through, and that is so much better than a quarter of the way through.

Why am I not more excited? ]]> zmom http://forums.lymphoma.com/blog.php?b=41 http://forums.lymphoma.com/blog.php?b=39 Wed, 14 Apr 2010 22:51:42 GMT This morning I had my second PET scan. It was just after one treatment cycle. I start the next cycle tomorrow morning. If my PET comes up clean,... This morning I had my second PET scan. It was just after one treatment cycle. I start the next cycle tomorrow morning. If my PET comes up clean, since I signed on for this study, I will continue through 3 treatment cycles & be finished by May 27th. Wouldn't that be grand?

I hope to be able to go shopping for a wig tomorrow. I already wear a wig for religious reasons (well, I cover my hair for religious reasons & a wig is usually my hair coverage of choice) but I need to clip it onto my own hair for it to stay. I want to get one that stays on without the clips. I found a place in my old neighborhood, which is a little over an hour away. I can't go myself b/c it will be straight from my 3rd chemo infusion & I may be tired & light-headed, not to mention that I need help getting it. I mean, someone's opinion, you know? ]]> zmom http://forums.lymphoma.com/blog.php?b=39 http://forums.lymphoma.com/blog.php?b=37 Fri, 02 Apr 2010 05:35:04 GMT Two treatments down as of this morning. PET is next step. Hope for 3 cycles instead of 6. Two treatments down as of this morning.

PET is next step.

Hope for 3 cycles instead of 6. ]]> zmom http://forums.lymphoma.com/blog.php?b=37 http://forums.lymphoma.com/blog.php?b=36 Sun, 28 Mar 2010 01:42:00 GMT Thank G-d I'm almost myself again. I was so terrified that I would have to roll myself into a ball for a few months & I couldn't imagine how I would get through it. By Thursday I was back to 3 meals a day & even a fruit that night. Friday, I think just a little pale & I have stomach pains which might just be constipation. Today I'm fine. (My treatment was Thursday, 9 days ago.)

Lessons I learned during my first treatment, cycle 1a:

-the night of chemo I have a hard time sleeping because of the steroids
-I need to have Percocet available in case of bad headaches, but I can't drive while "under the influence"; I can use Motrin at the same time
-during days 4-8, have Magic Mouthwash available; prepare food, rinse w/ MM, and eat to finish within 20 minutes
-I need help with the children during the first week, as well as dinner & shopping
-there are times I don't WANT to be brave & strong & I must accept help offered to me
-I should not just go to sleep b/c I'm in pain - I need to distract myself with books, shows, phone until I'm exhausted or I'll just suffer with my eyes closed
-at least this time I know the pain went from days 2 through 8 & now I have a break - I hope I always get that break
-I still haven't figured out how to deal with the constipation
-DVDs are magical to help with the kids, especially since they aren't used to being allowed to watch so much each day ]]> zmom http://forums.lymphoma.com/blog.php?b=36 http://forums.lymphoma.com/blog.php?b=35 Mon, 22 Mar 2010 22:58:34 GMT It has finally hit. The mouth pain & headaches... I can't concentrate on anything else. I know it could be much worse, & I can still pretend in front of the kids that I'm just tired. I can only eat a few times a day since I can't eat outside the 20 minute window after gargling magic mouthwash. I'm only supposed to do that every 4 hours. Good for the diet, I suppose!

I'm participating in a study where I'll only get 3 cycles of ABVD if a PET after cycle 1 comes up clean. I pray that it does. I know the effects of this are cumulative & I can't imagine going through this pain, worse each time, every 2 weeks for 6 months. The idea makes me positively cry. I should just get some sleeping pills so when I don't have to be with the kids I could be asleep. I don't much want to be awake. This with just some mouth & jaw pain. Thank G-d I haven't had nausea - I don't know how I would consider getting through all this.

Another thought to ponder: if my PET showed one cancerous node & hadn't shown the shading in the chest, would I have had the option of another surgery & no chemo? My marrow was clean, my blood was clean, & surgery was better than this. ]]> zmom http://forums.lymphoma.com/blog.php?b=35 http://forums.lymphoma.com/blog.php?b=34 Thu, 18 Mar 2010 17:57:53 GMT So I had my first chemo today. It went really nicely, & so far so good. The facility is beautiful, the people are wonderful, especially the nurse that gave me my meds. I had no pain, thank G-d, I guess because of the power port. I tiny prick on the way in & out. It took just over 2 hours, which is quicker than I expected. I'm a little light headed now but that happens to me on occasion anyway. I'm a little nervous about a reaction later since my husband has to go into the office tonight & my kids will be here. I hope it'll be okay. I am worried about nausea. I have all my meds ready to go. The nurse said I should take one type before bed - will help me sleep - and the other I should start in the morning whether I feel nauseaus or not. That should prevent the nausea. She said the drug she pushed before the ABVD will help today & should actually last up to 5 days.

The facility also has all sorts of complementary classes & things. Tai Chi, knitting, support groups. I think I will actually do the knitting thing - why not? I always wanted to learn how. I'm big on silver linings, you know? ]]> zmom http://forums.lymphoma.com/blog.php?b=34 http://forums.lymphoma.com/blog.php?b=33 Wed, 17 Mar 2010 00:58:32 GMT I met my new oncologist today. I like him. I'm still glad I had my first consult with a lymphoma expert. The new doc says we will follow the "guru"'s plan, which makes me happy.

I am scheduled to begin on Thursday. I'm pretty nervous. I haven't told a lot of people here b/c I don't really want it getting around, but I don't have much family here either & my good friends live a little over an hour away, & my husband works nasty hours, & what if I can't take care of the kids? What if...? ]]> zmom http://forums.lymphoma.com/blog.php?b=33 http://forums.lymphoma.com/blog.php?b=32 Tue, 16 Mar 2010 01:47:39 GMT Ugh. It's embarrassing how long it's taken to get started. First with all the scans & tests, then the appt with the onc that I had to wait for, then the fertility dilemna (plus time to see that doc, which wasn't quick), then a call to my onc that I was ready to start treatment....

.... followed by a call FROM my onc saying that he can't treat me without it costing me a fortune b/c he's out of network, then putting me on hold & finding out that his partner upstairs was IN network, then an appt with him to finally start chemo 2 weeks ago when he walked in & said that while he THOUGHT he was in network, apparently that lapsed & he won't be back on for a month or two. Then he sent the nurse in to start! And I was like, HEY! THOUSANDS of my dollars! Yadda yadda yadda. Two hours of phone calls & many tears later, we took my records & left.

Then I couldn't get an appt with the new onc for two weeks, which is tomorrow, so meantime I had a port put in - still pretty sensitive & achy on my neck - and they said they couldn't set up the chemo till after I saw the doc, even though I faxed all the scans & stuff to them. I get it - I think it's insurance issues.

Anyway, tomorrow's the day I find out when I finally start.

I'm a little nervous.

I think I'm as prepared as I can get. ]]> zmom http://forums.lymphoma.com/blog.php?b=32 http://forums.lymphoma.com/blog.php?b=31 Sun, 14 Mar 2010 17:00:09 GMT So my husband and i went out for kareokee lastnight. Just to get a break from the kids for a few hours. And i Had two jack and coke's i drank these two drinks in a 3 hour period.So their was no reason at all for me to get waisted from two drinks in 3 hours, I used to be able to drink 6 or 7 drinks to get that way,And the wierd thind is i wasnt trying to get that way. And now i noticed my lumps in my neck and groin have gotten more swollen and they hurt after i drank my first drink. i havent drank in a while. So could it just be i havent a drink in a few months so i am a light weight again and why did my lymphs get bigger and hurt after the alcohal. any one else experiance this or am i goen nuts !!:(:confused: ]]> lucia0417 http://forums.lymphoma.com/blog.php?b=31 http://forums.lymphoma.com/blog.php?b=30 Sun, 14 Mar 2010 16:47:50 GMT Hi everyone.I am new here, first id like to tell you a little about me, My name is Lucia i am a 29 years old, I have five small children, OK so here... Hi everyone.I am new here, first id like to tell you a little about me, My name is Lucia i am a 29 years old, I have five small children, OK so here is my situation, lets start by filling you in on cancer runs in my family a lot on both sides of my parents, grandparents ants and uncles have all had various types of cancer. and yeah what family doesn't have that at least a little. My little sister had Hodgkin when she was 18 years old she had stage C- 3.It was horrible to watch my baby sister go threw all that,I would of done anything to take that pain and fear away from her. And i'm very glad to say she is cancer free and doing wonderfully now for 9 years straight, you would never know now looking at her that she went threw such an ordeal. thank the good lord for that. anyway when my sister was done with her treatment the Dr. told my mom that me and my brother haft to get checked out regularly being that we are siblings we have a higher chance of developing it too. Im not going to lie i never went for a check up. i never felt ill and i really didn't think that i would get it too i mean what are the odds of that, it wouldn't happen to me too. that just doesn't happen. So Ive been fine for 9 years didn't even think about it. I saw no need to i was fine. And things were great then i got bronchitis, and i would take antibiotics it would go away for a few days and it kept coming back. this went on for about 3 months or so . Then I started loosing weight. Which im not complaining about at all i did mention i have 5 kids, And i went up to 265 pounds with my last. i now weigh 135 and this weight loss happened in a 7 month period. I didn't really think too much of it at the time. I just assumed my body was done with haven kids and it was going back to pre pregnancy.Then my mom noticed my cough i just thought it was a nervous dry cough. she has been pestering me to go get checked out, i told her it had to do with the cold i had a while back. well i haven't been feeling so good, i was starting to go slowly down hill. My voice has gotten very raspy.And my mom was getting concerned i am a smoker so i just figured a smokers cough, smokers voice not a big deal. Then i started getting pretty sweaty in the middle of the night, and its not every night its sporadically ill notice it for 2or 3 days then its not so bad one day then back again for 2 or 3 4 days straight its wintertime it could be because of the heat. So i mentioned the weight loss and sweating a lot more then usual even in the day time. to my kids pediatrician at a checkup they had, and i mentioned i was borderline thyroid problems after my first son. So she sent me to an endocrinologist. Mind you no one did a full blood work up on me they just checked thyroid levels. and the t3 and t4 were completely normal my tsh was barely their. so that's why she sent me to the endocrinologist. Who didn't draw any blood work to check my thyroid levels. He sent me for a iodine uptake test. that's the only test that he ran on me and he said i had graves disease. So i started taking medication he gave me. he said it could take up to 2 weeks to feel better. Well i wasn't getting better i was getting worse. but i ignored it think en ill get better sooner or later. Then i noticed these bumps in my groin area when i was showering. I called my endo and and asked him if that was a normal side effect to the auto immune disease graves. He said no.and with my family history, he said to see my family dr. right away. I went to urga care i didn't have a family dr at that time. my mom and sister did go with me. the Dr at the urga care felt my neck groin and armpits and said that i had slightly swollen lymphs. He did a full blood work up. and everything came back good WBC 9.8 RBC 5.25 but i had slightly raised Atypical lymphs 15. He referred my to a family dr who tested me for mono for tb. for viruses infections over a coarse of a few weeks to rule out other possibilities. Those tests came back negative. So sent me to have a cat scan done. The test results came back ok. the dr said given my family history she was referring me to the cancer center to see my new Oncologist. where she did more blood work and a full examination she said my lymph nodes are definetly slightly swollen. and that the she was putting me on a wait and see period cause it was early and she didnt want to put me threw tests unessasarily, she said my neck felt very full and she wanted me to get an ultra sound of my neck. and told me to come back in a 2 weeks and the test results would be back for ultrasound. so i went back 2 weeks later and she said my ultrasound came back ok and that i dont have graves daese and my thyroid levels were perfect from the bloodwork she did she said that. the only thing that showed up on ultra sound was that i have a few cysts and several nodules in my thyroid neck and lymph nodes. the blood work from the time before was pretty much the same except im now testing positive for ANA. And when she examined me she said that me glands are getting bigger, Their still on the smaller side but they are slowly growing. She said she is suspecting possible thyroid cancer,and hodgkins. She said my blood work came back normal for non- hodgkins and leukemia. And she thinks i have very early stages of hodgkins and thyroid cancer. she is sending me for a pedi scan on wednesday. and then i will haft to have a biopsy on my lymph nodes to see if its hodgekins. so my question is has anyone eles been threw a similar situation, where they found it that early to where it isnt messing the blood up yet. Is it even possible to find out that early. Could it really be cancer. Thanks for your help.Sorry this was so long. i just dont want to do the tests if its not needed. ]]> lucia0417 http://forums.lymphoma.com/blog.php?b=30 http://forums.lymphoma.com/blog.php?b=29 Mon, 01 Mar 2010 21:08:36 GMT Hello New Friends, I am posting for my husband. Forty-Five year old male. On January 22, 2010 his doctor told him he suspects lymphoma. Pet... Hello New Friends,

I am posting for my husband. Forty-Five year old male.

On January 22, 2010 his doctor told him he suspects lymphoma.

Pet scan on February 5th revealed enlarged spleen, several infected nodes, and possible marrow involvement in sternum and pelvis.

Bone marrow biopsy on February 10th.

Spleen removed on February 15th. It was the size of a football with several tumors. A lymph node was also removed from his abdomen for biopsy.

We have waited long and patiently for pathology reports, and just got results last Friday (February 26th).

In a nutshell-- My husband has a rare type of lymphoma-- classified as a "grey zone" because it is somewhere between Hodgkin's & Non- Hodgkin's. That's why we've been waiting so long for results.

The pathological diagnosis is: Mature Aggressive B cell Lymphoma, unclassifiable.

They are going to treat him in the same fashion as a diffuse B large cell NHL.

My husband's case is being presented to a "tumor" board today, where several senior staff will meet to discuss treatment. Unless there are other opinions on how to treat him, he will be treated with R-CHOP (chemo mixture).

Chemo should start next week, after he has more time to heal from his surgery.

Chemo schedule will be once every three weeks-- (6-8 treatments)

If he responds well to the treatments, there is a possibility he will still have a bone marrow transplant.

I have an 8 page report in front on me, and it's pretty complicated. I'm just going tell you some parts that sound important. You medical folks might get this!!!

Bone Marrow Biopsy:
Reveals an atypical focal T cell infiltrate, but otherwise non-diagnostic for lymphoma or leukemia

Accessory Spleen, Resection: Negative for Neoplasm

COMMENT ON PATHOLOGICAL DIAGNOSIS:
The cytological features and immunophenotype overlap between Hodgkin lymphoma and diffuse B large cell NHL. These mixed features and the absence of any demonstrable clonal rearrangement of either B (IgH) or T (TCR gamma)genes result in the lymphoma being classified as a form of "grey zone" lymphoma. As such, this case would fit in with the newly defined entity "B cell lymphoma, Unclassifiable, with features Intermediate between Diffuse Large B cell Lymphoma and Classical Hodgkin's Lymphoma (WHO Classification)"......This should be treated in the same fashion as a diffuse B large cell NHL

************************************************** ***********
Has anyone ever heard of this??? Does anyone out there have it, or know of someone who has it?? We are staying positive, but I am concerned that it is so rare-- I can barely find any information about it online.

We live in Detroit area, Michigan, USA

Thank you. ]]> slybury http://forums.lymphoma.com/blog.php?b=29