Does anyone have this or can they tell me about this paticular Hodgkins? We just found out she has this and she already had a CT, Blood work 2 months ago. Both normal now we have a PET ,CT, Xray , blood work for next week and are scared to death for her!!!!! Please if you can give me some idea of what to expect>
Hey, I am Nodular Schlerosising so I'm of little help but just wanted to extend a hand and let you know I'm thinking of you and your daughter (far too young).
Much love Annie
Same Here
Thanks, Monday and Thursday we are going for the PET, CT and some BW, 2 months ago all the tests were normal except for the R lymphnode that they took out. We are just in such an unknown world right now and are trying to make sure we are upbeat and positive about all of this with her. any idea about diet?
We took our daughter to see the oncologist Monday and had CT, Xray and also Blood work done. He seemed very optomistic and we went over staging and also treatment. Their is a new protocol out there "watch and wait" if you are in stage one? Is anyone else doing this? Not even sure if she is stage one or not yet until the PET on Thursday! I am going to try and go to work this week and focus-
Hi MOMO10,
I was diagosed with NLPH in May 2010 after they took an enlarged lymph from side of my neck. Scans revealed there was no more in my neck but I have 2 lymphs in my stomach that are slightly enlarged with some metabolic (cancer) activity. Seemingly they are not large enough or active enough to do anything about them yet so my doctor is also following the “watch and wait” protocol. He says it could be “awhile” before I require treatment. On Feb 12 I will receive my 3rd round of scans. If you and your daughter can deal with the stress of waiting and also if you have insurance that will continue to pay for the scans even if they have not received treatment (chemo, radiation or Rituxan), I am coming to be very persuaded that this is the best way to handle it. All of my research (not extensive but I have consulted three different oncologists and read multiple articles in medical journals)indicates that this is a very slow growing cancer and as long as the patient does not have any of the B symptoms, waiting is highly preferable to the discomfort of agressive or proactive treatment. Some doctors in private practice may be more likely to encourage you to be proactive about it because so little is known about this rare form of lymphoma. However, my doctor who is at MD Anderson in Houston, is part of a very large public medical school/system, researches, writes and presents clinics on NLPH, and he has had the good fortune (from my perspective)to see many more patients with NLPH, has come to be a big fan of “wait and see.” Whatever your doctor prescribes be sure to seek a second opinion. Try to find a doctor who is not in private practice, preferable who is involved in active research on this form of cancer. If you have the means to get to Houston, my doctor’s name at MD Anderson is Anas Younes. He is from Greece originally and he is brilliant but also has a very kind non-threatening bedside manner. I understand that Sloan Kettering is also a really good place to go if you have NLPH.
Best of luck to you and especially your daughter. My thoughts and prayers are with you.
VME
Mom,
I think I'd get a second opinion. Maybe they are taking that approach because of your daughters age, but I don't know if I'd be happy with the wait and see approach. It's not like it's going to go away, and it will only get worse with time - which will mean more treatments.
Good Luck to your daughter! My heart always broke watching kids pass thru my waiting room area on their way to the children's part of the hospital. It's bad enough adults have to go thru this mess - no child should have to.
Pete
Pete,
thanks we are definetly going with the 2nd opinion and her Xray chest and Blood work is normal, CT of entire body just shows a group of r neck lymphnodes that are big but not very large....waiting on the PET scan for Thursday.
Mom,
Don’t put too much stock in the X-Ray and bloodwork - both of those came back normal for me too and I was stage II…
I’ll keep my fingers crossed for her this Thursday!
Pete
I was diagnosed with this same type, and I just got my results from my ct and pet scan, and they were ok, except that i have it in both my armpits and not one, so I'm going to start radiation treatment for it in hopes that it will go away
My daughter just had her PET scan today and we meet on Tuesday to find out about our options. We are being asked to do a trial study thur the hospital which she will do 3 rounds of chemo and prednisone every 21 days? Anyone else on this....
so the PET scan was normal????? We have option one of having another lymphnode removed in the same area to confirm if there is thruly LPDHL or just go with the chemo?
I thought we could just chose easily but I am very afraid for my 10 yr old to go thru chemo...what if we did the chemo and did not confirm and she is cancer free......
still waiting on ST Jude for 2nd opinion...also have tentative surgery for NOV 19th???
Mom,
If the PET scan came back normal I wouldn't start chemo until it can be definitely proven she has Hodgkins or some other type of cancer. Like you said, why risk going thru chemo and subjecting your daughter to a whole bunch of other potential side effects if she really doesn't have it?
Best of luck!
My gut instinct is telling me to have her do the surgery and make sure the pathology is right........then if those are positive for HL we start the chemo....
so we are pretty sure the other lymphnodes are postive but she is still stage 1 and we are going to place the port on Friday and start Chemo on Tuesday...St Judes was our 2nd opinion and I think they are the best at what they do
Our 16yo son was diagnosed with HL on Oct 28 and was classified at stage 3b. Yesterday he finished his "first round" of chemo. I am glad to see you got a diagnosis so quickly as ours took 8 months of being sick and pressing the doctors for more tests. As far as hospitals go, my first choice would have been St. Judes, but due to their location and waiting list we chose to remain at home in Alaska for treatment. I have heard that the "road map" for children is very similar for all but that the length of treatment varies. So we too receive Prednisone along with his chemo. What lead you to a this point? Ours was persistent fevers.
I wish you lots of good wishes through your upcoming trials! Know that there will be light at the end of the road! :-)
Christine
Molly has Juvenile Rheumatoid Arthritis for over 8yrs. She was on Enbrel which has a slim chance of Lymphoma. She was ill in FEB 2010 and we noticed a Lymphnode in her neck was not getting smaller by June...we also had to push docs to get a biopsy and a CT-then we were sent to Oncology and here we are. How is your son doing with his first round of CHEMO??? I am really worried about Molly she is not angry, sad or anything? She seems to just be moving right along.......I am sad, angry and scared for her i guess.
I think I have a new found appreciation for when the doctors tell you that you have a 2 in 10,000 chance that the meds they put our children on will cause cancer. Our son, Christian, was one of the lucky two. He's had Ulcerative Colitis for four years and the last med he was taking was Humira. Doc said he felt strongly that was the cause and he'd be reporting it to the FDA.
Christian also got sick in February, but with super high (105+) fevers. They would come for a week, then be gone for a week. This lasted until September when they never went away. Docs tried to tell us it was a bug, an ear infection, mono, etc. I told them the fevers have patterns. I could tell them when his next fever would start up. That's not how bugs act! So yes with much demand from me, they finally started more invasive tests in September, the CT scans, bone marrow biopsies, neck biopsies, etc.
Christian has tolerated his chemo ok. I think the worst part for him is nausea. He's only lost it once and I think a lot of that had to do with the way we administered meds. You don't want to give large meals at the same time as meds. Give the body time to process the nausea meds, the chemo meds, and the food. We've also had to search hard for supplements and high calorie foods to curb the expected weight loss as he was already skinny to begin with. And expect lots of sleeping! I don't know if Molly is attending school or not. We pulled Christian out this year because of his steady absences. Another issue we've encountered is constipation and you don't know it until it hits you like a ton of bricks. So stay on the softening meds up until diarrhea hits. Also I would encourage you to accept the IV nausea meds they offer. Christian took them the first week, opting out the second week. He was extremely sick the second week.
Christian's biggest worries are not graduating with his class (he's a junior) and his hair falling out (which has already started). He's not like, "Oh my God I've got cancer." Actually when we told him, he said, "Oh I see." Then you could see the wheels turning and there came the questions. The doc told me that parents always take this harder than the kids. Am I angry; you bet!! If they'd have listened to my plea's way back when maybe he wouldn't be at stage 3. But at the same time, my anger doesn't help my son. The chaplain came to visit us during his stay at the hospital. I had to leave the room to regain my composure after she asked me if she could do anything. I am a Christian, my son is not, and I've done much questioning of my faith since this all came along. Anyways, I guess while I was gone she talked to Christian and asked if she could do anything for him. He said, "Yes could you please fix my Mom cause she's having a real hard time with this."
Christine
It's amazing when kids show us how observant they are, And I understand what's going on with your faith issues at this point I couldn't imagine watching my child go through this I think my faith is the only reason I'm dealing with my issues the way I am I don't believe God caused or allowed this to happen. I pray that your son gets better I'm 3b also my symptoms went away after the second or third treatment and one good thing is he should have to have radiation at this stage. Keep us posted
Port went in fine today she is very sore in her chest area but now we move on to CHEMO.HAS anyone had the AV-PC
Doxurbuicin
Vincrristine
Prednisone
Cyclophosphamide
Clinical study called AHODO3PI