HL Treatment Options

Physical Health Cancer
1

Hi all,
I was diagnosed with HL two weeks ago. Unlike most of the folks here, my diagnosis came straight from a pathology exam of my tonsils after a tonsillectomy, a rare enough event for a 40 year old man. Other than tonsil trouble, I have no symptoms and perfect bloodwork.

Although my staging is not yet complete (PET/CT scan tomorrow), my oncologist's money bet is that it's going to be stage 1. He has me already set up for ABVD chemo for six cycles starting next week.

So this is one highly-rated oncologist's prescription who happens to be quite close to where I live (San Francisco Bay Area). What I would like to ask you fellow HL patients is: where would I get the best treatment? I was surprised to learn that HL is so rare (8,500 new cases in the US per year), so in the entire metropolitan area I am in there are only 270 or so new cases a year. Any one hemo/oncologist is not going to see it all that much. It's my life and I am determined to get a second opinion and a third if necessary.

I've got a visit to Stanford in the works. I would appreciate your help with any recommendations of other experts in HL to seek out. If I have to get myself out to the East Coast or further, I'll do it. Thanks in advance for any suggestions.

2

Getting treatment with ABVD is the first line of treatment for Hodgkin's lymphoma. While you may find some other alternatives out there, most oncologists will want to take the same route.

The only thing surprising to me is that your doc wants to do 6 cycles for what look like stage 1. That seems like it's a little excessive. My husband had 6 cycles for stage 3A. And has now been cancer free since September. It's not a fun journey by any means, but the cure rate is very high.

3

Hi Fighttothefinish: I don't know how rare is HL but I know it has been around for a long time and it has been treated with sucess for decades and although there are new chemo protocols they still use some of the old ones because of their efficacy. For what I have seen the protocol they follow is pretty standard, ABVD as first choice and BEACOPP as second choice if mid way during treatment they find tumors are not responding to ABVD...
At first when I was dx (back in December) I had the same concerns but then I realized that not matter where you go the treatment at least at first is the same so I decided I would get treated where I live and only look for other options if things where not going well. I was stage 2 A and had 8 sessions (4 rounds) of ABVD and I must say it worked very well... I just had a PET scan and it is practically clear... I had my first radiology appointment yesterday and the doctor said I almost don't need radiation but he'll do it as a "insurance policy" only using Low dose radiation.
I think in your case things will be even better since you caught this so early... who knows, maybe you won't even need radiation....

4

Hi Mimmi,
thanks for your response and support. Your English is excellent by the way, far better than many native speakers I know.

Congrats on the clear PET scan (mine is tomorrow - cue ominous music).

I too plan on being treated locally using ABVD+radiation. I just want to ensure that the DX is correct and the treatment plan is correct. This is not the time or situation to be part of a randomized trial for some experimental treatment.

Interestingly enough, you were HL 2A and done with 4 rounds. Was that the plan all along, or did they stop at 4 once the PET scan came back clear?

5

Hey Fighttothefinish,
Sorry about your diagnosis. Hopefully it is 1A and you won't have anymore treatments other than the 6 cycles of ABVD. I was diagnosed initially at 2A, but after my PET scan, which was 6 days before the start of my chemo, they found spots of cancer on my right humerus, and in my pelvis. So that got bumped to 3A. Either way I went to one of the best Universities on the East coast for cancer treatment and they prescribed the same treatment(6 cycles), as my original oncologist. Basically moral of the story is, generally they start with the ABVD, have a PET scan midway and decide what to do from there. This is one of the more well known and treatable cancers it seems like, so I think most oncologists have a pretty good gist as to where to start. It was mentioned before that they'll evaluate whether to continue full term treatment, radiation or not about midway through. I'm having my third treatment on Tuesday, and I have to say, the things said by a lot of the "old timer's" in this group have proved invaluable. Try to take it easy, everything is gonna be fine.

6

YankeesFan,
thanks for the note. The DX is what it is, I am sort of philosophical about it. I always thought my number could get called in many ways. The day I got the DX was when those tornadoes hit Alabama. “At least I can do something about this” was my first thought, thinking of those poor souls who didn’t even see the twister coming.

Re my question about treatment, I realized I phrased it poorly. I want to make sure that the DX is right. The real fear I want to quell is that it’s misdiagnosed, and I find out after two rounds of ABVD that it’s something else, and now the situation isn’t quite so rosy.

Would you mind sharing where you went and who you saw for your second opinion?
One of the HL survivors I connected with went to Dana Farber, and is now cancer-free after 6x ABVD plus two weeks of radiation.

7

Gregswife, thanks for the response and suggestions.

It does seem that ABVD is the standard first-line treatment for Hodgkin's. I consider this as a "fight for your life" situation and owe it to my wife and kids to do whatever it takes. So I want to make sure that before I start treatment that I have my diagnosis and treatment plan reviewed/confirmed by another oncologist.

So really I am looking for the best place to go get that second opinion (and third if necessary).

While 6 rounds of ABVD seems like a lot to me too, I think (and will verify on Tuesday) that the onc meant "up to 6 rounds" with the exact duration based on the intermediate scan results.

Congrats to "Greg" for his success.

8

Hi, Fighttothefinish.

It seems an appropriate way to find out - Thomas Hodgkin, who first described the disease, was a pathologist, and would no doubt have been proud of whoever examined your tonsils. You have the privileged status of having been diagnosed before you had any idea there was anything wrong beyond tonsilitis.

The treatment for HL is well established, and very effective. That having been said, it is still a cancer, so not to be taken lightly. The good news is that it is very curable. It is fairly uncommon - less than 1% of cancers - but is diagnosable with certainty, and your doctors will have seen it before. That should quell your fear of a wrong dx. Six cycles of ABVD is pretty standard treatment, although each cycle can comprise two separate chemotherapy sessions, two weeks apart.. So six cycles takes almost 6 months..The stage doesn't in itself alter this, so far as I know, but there are often other factors that may mean radiotherapy. I hope it doesn't, but the PET may show HL in other places. Unlike many other cancers, however, that's not particularly bad news.

The chemo is fairly benign compared to some treatments, but it is a big hit nonetheless, and you will know you have had it. Mine was administered by a specialist nurse, with regular checks by doctors, and is really just an infusion of the four drugs in sequence, with flushing in between. It takes around 3 -4 hours each time, and the biggest side effect after the first step into the unknown is boredom. Your body has two weeks to adjust between treatments, and I went back to work after the second session. Everyone is different, the side effects weren't too bad for me. I was actually very ill when I started it, and got better quickly, which made the side effects seem nothing much.

As for where to go for treatment, I had mine in Bristol, England, and have no complaints. It's a long way from San Francisco, though. I've done the trip, it's hard work!

All in all, there is a very strong likelihood that this will be a one-off suspension of normal business for you, and that you will be able to return to life with no great adjustment. I am now 9 years clear, with no lifelong medication as a result. All the best to you and yours!

9

Tony, thanks for the response. I actually spent a lot of time rereading the pathology report carefully. It seems that they did a very thorough job, to my layman’s eye at it least.

They identified it as classic Hodgkin’s lymphoma, lymphocyte-rich, which apparently is one of the rarer variants, less than 450 new cases per year in the US. Assuming the dx is right (and why wouldn’t it be), like you said, standard course is ABVD. My oncologist is not the go lightly kind of guy, so he’s prescribed six cycles (12 infusions), on the approach that I’m better off exterminating the cancer on the first attempt that have to take a second shot at it with a different protocol and/or a BMT.

As you said, everyone seems to respond differently to the chemo, I am hoping that I’ll do as well as you did.

10

Fighttothefinish,

No problem, I went to get a second opinion at UPMC medical center in Pittsburgh, PA. It is very well known institute for cancer treatment, and I saw and incredible oncologist/immunologist named Dr. Raptis. I had had a bone marrow biopsy, and also a tumor biopsy done prior to official diagnosis however. I was able to take those slides/reports with me to UPMC so they could look them over and decide on diagnosis themselves. They staged me later(3A) then my original oncologist but assured me that is it would be the same treatment either way. I'm sure that after the results of your PET/CT scan you will have a better idea of what's going on, and will be able to take those with you to aid whoever will end up being your second opinion. I currently undergo treatment at my local Cancer Center, and couldn't be happier with their service and competence.

11

Yankeesfan,

I smiled when I read your note because I’m now similarly equipped. I picked up my slides from the pathology dept on Thursday, and on Friday I had my PET/CT scan. I requested a CD for myself, which is sitting to my right, unopened. I soooo want to put in my computer and take a look, but I know I’d be so baffled it would be at best a waste of time. I’ll just have to wait till Tuesday when I meet with my oncologist to find out my staging and the results of the bone marrow biopsy, the PET/CT and the MRI.

I’m also queued up for a second opinion at Cedar-Sinai and Stanford so I think I’ll be able to start my chemo week after next with a very positive frame of mind.

By the way, I have been very positively surprised at my oncologist’s office kindness, thoroughness and competence. Their office and medical staff is superb. It truly takes a different kind of person to work in this field.

12

Hi Fighttothefinish,
My daughter was diagnosed with Stage 2A- Bulky Hodgkins. She recieved 6 cycles of ABVD. We were told that she normally would have received 3-4 cycles but because of the size of the mass in her chest (hence the bulky) it was recommended that she have the additional cycles.
This was followed by 10 radiation treatmenst and 3 more directed at the big mass area. Her side effects were minimal.
I

13

Hi Mastern, I hope your daughter is doing well. Thanks for the feedback. I am off for my second opinion tomorrow.

Fight2

14

Hi Fighttothefinish,

Seems you got the right idea! I agree also that you may spend a lot of time trying to understand the results, with no real benefit. Doctors use a strange language, which I call Medispeak, and it's not worth learning. They will tell you enough to occupy any inquisitive mind in any case.

If at all possible, take someone with you for your first chemo. I was able to drive, or, on nice days, walk home from mine, but you never know until your first treatment is done exactly how you feel. It helps to have someone to listen to the reams of info, and maybe make notes, so you don't miss anything. And of course, there's moral support, always useful when you are on unfamiliar ground. Take a newspaper and a book - times passes slowly.

I had a canula fitted each time, in the back of my hand. The drugs mess up your veins - not a big issue, but they can't use the same bit again -so the nurse started as far from my wrist as she could, and moved back each treatment. Others have a "port" fitted surgically, or a permanent line. Each method has pros and cons.

One of the drugs turns your urine a vivid red colour. This passes quickly, but could be alarming if they forget to tell you first. I'm sure that's not all it does.

I was given two bags full of drugs to take home - steroids, anti-nausea, constipation, etc. Listen carefully to the instructions for taking them. I wrote a spreadsheet to make sure. Don't spend too long reading the side effect leaflets, as they will list everything that could possibly happen. Your hospital will tell you the most important, and you can call them at any time. Don't be afraid to do that. They would rather spend a few moments reassuring you than risk you not telling them something urgent.

Eat, drink (not alcohol) and rest as well as you can, and don't panic! You'll be fine.

15

Thanks for the pointers. I’ll be on the lookout for the red urine, might make a good picture for my private diary. On the IV side, I am going for the port, seems like a bit of pain upfront but well worth the effort.

I’ve been fortunate that my wife has been able to come with me to every appointment - allows to go over the mass of information thrown at us at the time, and fill each other in as to what we may have missed.

I also think I’ll be borrowing your spreadsheet trick for tracking medications.

So I look forward to updating you all with my progress. Thanks for the time you’ve taken to share your history with me, superbly helpful.

16

Fight-
From what I can gather, everyone has very nicely addressed the issues you're bringing up. It's true that HL is rare-- incidence is extremely low-- but it is arguably the most thoroughly researched and studied cancer in the world. More peer-reviewed journal ink has been spilled on HL than on any other cancer.

It wasn't the first cancer to be successfully treated with chemo/radiation (that would be childhood leukemia) but it was probably the second. In fact, a chemo regimen in limited use today, known as MOPP, was the second combination chemotherapy regimen ever to be developed, dating back to the early 1970s.

The thing HL has going for it is that while treatment is not a foregone conclusion for everyone diagnosed with it---- check the SEER stats for a reality check if you like that kind of thing ---research on treatment has reached a stage that no other cancer can arguably boast of: today what's studied is ways to make the already-successful treatments less toxic, less difficult, more efficient. In other words, treatments are being refined and perfected- almost everywhere else, they're still being developed.

If your pathology/dx was done at Stanford, you do not need a second opinion on those results, although it NEVER hurts.

Ross

17

Thanks for the info, Ross. You can bet that the very next thing I do is Google SEER and find out. Appreciate you taking the time to respond.

My pathology was done at the local hospital after a routine tonsillectomy. Running the numbers, I think there’s a better than even that the pathologist has never seen cLRHL before, so the DX is based on clinical reference material.

So I went to the hospital, picked up the slides, and will FedEx them to Stanford with the PET/MRI CDs. Better safe than sorry, like you say.

One more thing - since you seem very knowledgeable about HL, is it worth hunting around for a clinical trial? What I’ve seen suggests not, but again, no harm in asking the question.

18

I was diagnosed at a small community hospitial, and the Oncologist recommended I go to a large cancer treatment hospitial or a University Hospitial. I live in the Philadelphia area and chose Fox Chase Cancer Center. They also said I would need 6 cycles (12 sessions) of chemo.

I think you are doing the right thing going to a University Hospitial for treatment. The Cancer Center has all the resources and I am able to have blood work, see the Dr. and have Chemo the same day. In addition, when I had my PET Scan I had the results available when I went to see the Dr. within the hour. These are the reasons I choose a hospital that specializes in Cancer like a large Cancer Center or a University Hospital

I would ask these types of questions, and stay positive, it is only temporary.

19

Mrmark, thanks for the input. I am lucky enough to be in a large metropolitan area with four major Comprehensive Cancer Centers within 90 minutes’ drive. My staging was done at the nearest one, all of 15 minutes’ drive including valet parking.

I guess the underlying question for me is “can I get a better expected survival taking the extra time/effort to get treated elsewhere”, Stanford being the obvious choice. By the way, I am not asking anyone to burden themselves with this question on this forum. Just sharing and in the process clarifying things for me.

20

I agree with MRmark.
Being treated at a Cancer Center has it advantages. Pet/cat scans, blood work and any other testing is done on the premises and the results are immediate. My daughter is also being treated at Fox Chase Cancer Center. The people who work there are so warm and caring. On our last visit radiaoloy dept., oncology and the radiation doctor were all on conference calls while results were being fed to their computers. The Center schedules all appointments and testing and coordinates it so that we can do this in fewer visits. I think what it boils down to is who and where are YOU comfortable. You will be spending alot of time at the hospital. I liked the fact that it was only a 1/2 hour drive for us rather than a 1 1/2 hour commute each way to our University Hospital.