My daughter was treated a year ago for HL stage 2A bulky.
She had 6 roundsof chemo (ABVD) and 13 radiations (3 of which were directed at the large mass that was in her chest). Radiation finished in January 2011. A pet scan in February showed 1 area of new activity, a repeat pet in May showed 3 new areas. The follow up on Friday (7/1) showed several more areas. We have an appointment in 2 days to meet with the oncologist. He told me that it is very rare for someone that was treated so extensively to have this reoccur. but something is showing up. The plan is to do a biopsy on these new areas. I was told that they are in the large mass that was in her chest. Has anyone else had this happen? I so appreciate this site and all of the help that was given to me when we went thru this last year. Any information is helpful. THANKS
This is unusual, but it can happen, unfortunately. I'm not one who has had a second bout, so I cannot speak with direct experience. My oncologist did tell me, during the treatment, that he had other bottles on the shelf if the ABVD didn't work completely. I had the big mass in the chest, and had 6 courses af ABVD (12 doses in all) plus radiation. The ABVD shrank the tumours to almost nothing, and the radiation was probably precautionary.
I hope this ends well for your daughter. The biopsy will reveal what the problem is, and will guide the treatment.
Thanks Tony.
My daughter was treated in the same manner. ..6 courses (12 chemo's) ABVD followed by radiation. They are concerned that the original could have restructed or it could be a secondary type. A biopsy is scheduled for Tuesday. The doctor told me that her original biopsy, of her neck, in May of 2010 Clearly indicated Hodgkins. There was no doubt. But they are not sure what or why new areas are showing up. I was hoping to hear that is more common then not.
Mary Anne-
While HL recurrence is rare, it's hardly something that just 'never happens.' In fact, for proof of this you need look no further than the pending approval of Adcetris (SGN-35) this fall from the FDA, a novel treatment for people with relapsed or refractory Hodgkin's. In other words, there is unfortunately a market for just such a drug.
under the microscope, HL is indeed very distinct, so I can see why they would say they have no doubt about the first biopsy. but at the same time, the commonly accepted estimate is that 1 of every 6 lymphomas is misdiagnosed, and I just don't trust a doctor who's that certain. Nothing is that certain in cancer.
if you got a second opinion on the pathology results last year, OK. If not, you still can, and I think you should.
I realize that she's getting another biopsy done, and I think it's important for the next step in her care for them to determine if and how her disease has transformed.
I also think it's a bit puzzling that the doc would be so surprised, because, although her diagnosis shows she was asymptomatic, the presence of 'bulky disease' generally earns the 'unfavorable' stamp and instantly makes it harder to treat. Message me tonight if you'd like to, i'll be up a while.
Ross
This abstract from 2009 is pretty relevant to your daughter's case, I think it's worth reading and discussing with her doctors.
Ross, Thanks for your response. I did read the article and may bring it up today. I don't think our doctor mislead us. From the start he shared that there is a higher % of reoccurance when someone has a bulky mass. That is why they treated her extensively and also why they did not want to remove the port. The original biopsy want done on a mass in her neck. Her chest had the bulky mass & I have been told that there is scarring and scar tissue there now. These new spots are showing up within that area. I was wondering if someone can have Hodgkins and Non Hodgkins at the same time?
My daughter is special needs and really handled the first go around fantastically. She was upset about the hair loss but other than that accepted every chemo with smile on her face, talking to everyone & just upbeat the whole time. When she felt nausea, we could handle that with meds & she was fine. She even worked at her job thru the treatments.
I think this is going to be different.
Mary Anne-
I very much remember you and your daughter from last year because you posed the question of how to discuss chemo and side effects and all that with a special needs child and speaking only for myself I have to say, that question-- the entire issue-- stunned me. I’m happy to read she did so well, not happy to read of recurrence.
to answer one question, yes-- you can have Hodgkin’s and non-Hodgkin’s. It’s not common by any stretch but it does happen. Just like you can have a B-cell NHL and a T-cell NHL at the same time, or two B-cell lymphomas at once. I think that in some circumstances they would be regarded as separate entities-- like the T-cell and B-cell-- and therefore treated with fully individual therapies (in fact right now a man I know, his son-in-law is recovering from a bone marrow transplant to treat a T-cell lymphoma, this after he’d received treatment for a B-cell lymphoma) and in others, say follicular lymphoma and diffuse large b-cell lymphoma, they’re likely the same disease in transformation from indolent into aggressive. Whether an HL and an NHL are the same or not, I really don’t know and hate to speculate. Certainly if the NHL is a T-cell then it’s pretty clear they’re different diseases since Hodgkin’s is a B-cell disease. If the NHL is a B-cell, I don’t know. The thing is, as I’m sure you know, not only are Hodgkin’s cells very distinctive in morphology–how they look–but HL as a cancer is generally very orderly-- it moves from nodal group to nodal group rather reliably. NHLs meanwhile, enjoy no such accountability. they’re in part characterized by the absence of any order. So it seems counterintuitive to imagine them as children of the same disease. But cancer is full of surprises.
Has there been any discussion of trying to gain early access to Adcetris (SGN-35) for your daughter? I don’t even know whether she’d be a good candidate or not but they would, and there’s every indication that the drug will live up to the hype. I just emailed with a man in Holland whose wife scored early access to it. Compassionate use programs are alleged to be easier in Europe but Adcetris is coasting into approval seemingly without a hitch so who knows, maybe Seattle Genetics already has a program very quietly underway.
you mention the scar tissue etc, has she had any breathing problems?
finally if she does require a transplant, you might want to start by reading the link below at the national marrow registry on outcomes in HL from transplants, partly because it suggests the jury is still out on HL and allogenic transplants. if that’s the route her docs want to take, you might want them to produce some data to back it up.
Ross
Saw the doctor today and received a copy of the pet scan. Several new areas appear where the large mass was in her chest. A biopsy is scheduled for Tuesday. The doctor mentioned either ICE or IGEV would be his choice of treatment. She would be in the hospital for 3-4 days while the chemo is given. He went into detail about length of hospital stay and information on stem cell transplant but first we need to see what the biopsy reveals.
Can anyone ask around about ICE or IGEV and experience with it? thanks
I can’t speak from personal experience, only what I’ve been told, and I’ve been told quite a few things about ICE and the consensus is that it is a BITCH. It’s a three day cycle, and days 1 and 3 are said to be mild- probably because etoposide is the only drug being given, but day 2 is very tough; it rings the top bell (scores a 6) on the Emetogenicity scale, i.e. the vomit potential. This probably has almost everything to do with the addition of carboplatin; the platinum-based chemo drugs are among the worst culprits when it comes to nausea and vomiting. Ifosfamide isn’t a whole lot better. that said, prophylaxis against chemo-induced vomiting has come a long way, and her doctors should be able to mitigate the worst of it.
I wasn’t familiar with IGEV. A search of the literature came up with just six hits, only three of which were specific to refractory Hodgkin’s, so in terms of sample size and understanding of its efficacy in the salvage, pre-transplant setting, the peer-reviewed material out there is pretty thin, especially compared to ICE.
Sorry, outside of my experience.
Hello
I hope all is going okay. I noticed it has been a while since your last comments. I wish that your daughter is okay. I had it come back. it was in scan 6 months later. I had stage 3A no bulk or nothing. I had ICE chemo, Cytoxen and BEAM before my transplant. I was in hosp 3 weeks at Karmanos. I am now doing the trail for SGN-35. I dont know if I have a placebo or the drug. I went through Karmanoes. My doctor was great. email me for more info. good luck. I know this is very difficult.
Are you in the AETHERA trial? I can’t believe, I mean I can not freakin believe there’s a placebo arm!!! what the hell’s going on, double-blinds are one thing, but placebo arms in cancer trials are almost unheard of, for obvious reasons. at the very least, the control arm is supposed to receive the best available treatment … not a placebo. I’m stunned.
Well, My daughters cancer has returned (or nevr went away) because she never did have a clean pet scan following her chemo and radiation last year. A biopsy confirmed it is the Hodgkins that she was diagnosed with last year. She is being treated with IGEV. The cheo is administered over 4 days in the hospital every 2-3 weeks. Her first go round was 7/25-7/30. She handled the 4 days of chemo beautifully but on the 5th day she had the side effects kickin. Nauseau, drop in blood pressure, fast heart rate & passing out. The doctors were able to get everything under control and she was released on the 6th day. The following day she received a neulasta injection which did couse major joint pain a few days later. She also had the WBC drop to less than .5 and her platelets were at 67. The doctor felt that was her low day and everything would come back up. Tomorrow we see the oncologist for bloodwork and if her counts are OK then she will be admitted to the hospital on Monday to start this all over. She is quite upset now because her hair is falling out, again. My husband and I met with another hospital regarding the stem cell transplant that she will need. They walked us through eveything. This is so much to absorb. We have not shared this information with our daughter because we did not want her worrying about anything else. Thanks so much to everyone that is commenting because I use this site to get information and support.
Had a recent PetScan and doctor left a phone message that we have to discuss the results. I had a stem cell transplant in November and a bone marrow biopsy several months ago and I was fine. I do not know what the PetScan report is yet but I am hoping that I am still doing well. I want to stay positive about my condition and the treatment that I am receiving. I was diagnosed with Mantle Cell Non-Hoghkins Lymphoma stage 4 February 2010.
I will return to this site after I speak with the doctor tomorrow.
Let us know the results nanfocus1, and if there's anything we can do ...