HL Treatment Options

Exactly my thoughts, Mary Anne. Between chemo, neulasta injections, scans, radiation and goodness knows what else there’s going to be a lot poking going on.

It's true, there's nothing like a specialised centre of excellence as the place to have your treatment. I was dealt with in Bristol, UK, where the Haemotology and Oncology centre has all the equipment needed. More importantly, it has friendly, knowledgeable, and patient staff, right out of the top drawer. This may be your first cancer, but it's their 1000th. That doesn't affect the way they deal with you. They are unhurried, efficient, and so reassuring. Better that than someone reading from a manual!

I remember sitting in the room for the first time, with a look on my face that told everyone, but fooled no-one, that I was pretending not to be nervous. I was amazed by how easy-going the whole place was, and how relaxed the patients were. I very quickly lost the rabbit-in-the-headlights look, and by my third session, I felt like a veteran. Oh happy days! Well, not quite. But like a lot of things in life, without being morbid, I had an opinion on what it would be like to have cancer, and to be treated for it. I was wide of the mark - it was nothing like as bad as I had imagined.

Thanks Tony. At my last visit with the oncologist, my wife thought I was putting on my best poker face. Little did she know the turmoil inside, or maybe she just chose not point it out later.

Quite stunned how efficient the process has been here in the US. Once the insurance approved (and that took about a week), all the tests were done in a week, and they would have had the portacath in me as well had not I had one last business trip I wanted to take before the chemo started.

Like you said, I think a whole lot of my opinions in life are about to change.

Cheers,

Fight2

PS - Since you’re in the UK, you might appreciate that I scheduled my chemo to start on the 26th, so that when the worst side effects of the treatment kicked in on the 28th, I’d have at least the Champions League final to distract me.

Fight-
That's the thing with lymphomas-- your average community pathologist has probably seen all cancer types, and can simply peer through a microscope to tell not only the tissue type but whether cancer is present or not, but lymphomas are a moving target and renowned lymphoma experts often won't begin treatment on a patient unless their biopsy has been reviewed by a certified blood pathologist. granted, HL is essentially a B-cell lymphoma and those are much easier to dx than T-cell lymphomas, but the point remains.

As for a clinical trial, it depends on what you're looking for. Because treatment for HL is undergoing precision, there are often trials done using standard therapies but different (typically lower) doses of the meds. The most famous and most respected such group is in Germany, the German Hodgkin's Study Group, but you're in the Bay Area right? (I grew up in San Ramon) Stanford has been at the forefront of Hodgkin's research in the US for several decades now. They even have their own HL chemotherapy regimen, called Stanford V, which I think is for patients with what's known as unfavorable diagnoses, i.e. B symptoms and later stage disease.

Keep in mind, Stanford is where Henry Kaplan worked- few more important names historically in the progress of treating HL than his.

Ross

Ross,
thanks for the insights, you very eloquently voiced my thoughts/concerns. I had kind of a rough meeting with my oncologist Tue when I asked him if we should have the pathology reviewed prior to starting the ABVD. He was pretty dismissive, and when I probed further he mentioned that the one Jerome S. Burke had signed off on the original finding was one of the top lymphoma pathologists in the country.

(In case anyone is wondering, I checked it out, he wrote the book on lymphoma pathology in the tonsils, which is were they found mine: Neoplastic Hematopathology Neoplastic Hematopathology - Google Books)

I felt a little green in hindsight, but also realized that it would have been so much easier for me if that information had been volunteered instead of extracted.

The German’s Hodgkin’s Study Group is fascinating, especially to me as they published a specific study on cLRHL, which was interesting on two points - the high frequency with which cLRHL was misdiagnosed at pathology, and the 96% 3 -year survival rate reported in their cLRHL sample.

I did end up connecting with Saul Rosenberg at Stanford, Kaplan’s colleague, and I’ll be seeing his team on Wednesday. We’ll see what they say.

Fight2

Fighttothefinish,

I shall raise a glass to the west at half-time on the 28th, and think of you! I was born close to Manchester, and used to go to Old Trafford often. A ticket, a ticket, my Kingdom for a ticket!

More seriously, I suppose, I recall lying in bed in hospital in 2002, after being told the tumour was inoperable, but before the biopsy result came back. I felt sorry for myself, and started thinking of things I hoped I would live to see. The first was my daughter's wedding, the second was the third film in the Lord of the Rings trilogy, and the third was Manchester United winning the league. Then I thought that if these were the major things, then why was I worried about a little thing like cancer? Kind of cheered me up.

For the record, Man Utd came a disappointing third. The wedding was great, although the marriage didn't last. But I enjoyed the movie. Keep your aspirations low, but get through Hodgkins!

Tony,
and I shall raise a glass to the east at half time to toast my supporter in the UK! And toast again to the Red Devils hoping they strike a blow for direct football over that tiki-taki stuff. And then I’ll toast again to my new best friend the Red Devil himself, Adriamycin. Thanks for the tip about peeing red, no one told me.

By the way, my chemo has been postponed to June 1st due to some screw ups by my soon to be former oncologist and his staff. I am sure my friend the Red Devil will be waiting.

Cheers,

Fight2

Cheers!

Of the four drugs in the ABVD cocktail, Adiamycin has to be the only one with any chance of finding favour as a recreational drug. A big thank you to the Men and Women in White Coats, who dug around in the garden for something they could make a drug from. Who knows, there may be a cure for something else under my refrigerator?

Fight2,

Not long now! I have beer, and am cooking a curry. My son's coming over for moral support.

Tony,

I am also looking forward to a sparkler of a game, and think ManU has to win for the good of the game.

As it turns out, I have NOT started chemo yet, since I wanted to get a second and a third opinion. Good thing since they both strongly recommended only two cycles of ABVD without any Neulasta and Epogen, which I have learned is now the standard of care for Stage 1A non-bulky, especially since I have a clear PET scan.

The original onc was going to put me on six cycles of ABVD, plus his nurses kept making basic mistakes.

So I will raise my glass to the East at half time and toast to your support and the Red Devils, of both the human and pharma kind.

Fight2

Wonderful, I am nervous, but don't think Man U will make the mistakes of 2009. There has been a major distraction over here, though, with big stuff in the papers and on the TV about the alleged indiscretions of one of the players, and more importantly his attempts to hush it up through the courts.

Excellent news on the ABVD front though. Your original oncologist may have have been right on the day he decided the treatment. This dosage thing is very recent and fast moving. But, as George Michael once said, you've got to have faith. A clear PET scan can never be a bad thing.

I've seen a lot about neulasta on this site. I'm sure I never had it, nor was it ever mentioned. And I don't rember Epogen, although I did have a growth factor called GCSF to boost my white blood count. Could be that British oncology doesn't use these drugs for everyone.? Answers please?

Neulasta is “American” formulation for G-CSF that is longer lasting. Because of patent protection here the maker can extract a really high price from the insurance companies. In the UK with single purchaser they would give you the generic G-CSF but three shots instead of one.

Neulasta is highly controversial amongst some oncologists because it carries the highest profit margin of any oncology drug. Costs insurance companies $3,000 - $5,000 PER INJECTION!

My “former” oncologist had convinced my insurance to authorize twelve of these suckers, and was planning on giving it to me with every infusion. My 2nd and 3rd opinion believe it would be highly unlikely that I would even ever need it.

Fight2

Cheers!

Rats!! Barcelona 3, Man U 1! Got to hand it to the Spaniards, though, they make the beautiful game even prettier.

Now, where were we? Ah yes. I had no idea of the cost of G-CSF. Hell's teeth, it makes gold or heroin look cheap. We are bound by patent law too, and the drug companies take full advantage while they can. I guess for every drug that goes into use, a thousand get poured down the drain, so maybe they earn their corn. The cost kind of makes me happier, because now I know that I was not given it lightly. In our publicly-funded system of medicine, cost does not often preclude a medicine if it helps the patient (although there is a big debate on that point), but doctors are aware of cost, and wouldn't prescribe something unless the benefit was worth it.

The administering of the drug is another matter which may be of use to sufferers. It is injected. I was given three options - attend hospital daily for it, have my local doctor's nurse inject it, or do it myself. I opted to do it myself, as the easiest option. The nurse said he would do the first one to show me. I asked him to let me do it, with his supervision, as I learned to tie my shoelaces and necktie that way. He agreed, although he had never done it before. It was straightforward, with little chance of getting it wrong next time, and I think he may do it that way in future. I injected it into my belly. You pinch a handful, and put the needle in that, making sure you get the narrow point first. It sounds gross, but really isn't.

But learn from my mistake. I put a sticking plaster on. The pain involved in pulling it off - ouch! After that, I simply held cotton wool over the site until any blood stopped. It didn't bleed much, but I wore red shirts when I could, just in case.

TonyK,
bummer, Utd played great but Barca were from another planet. Thanks for the injection tips. All I can say is I hope I won’t need them, especially as it looks I’ll be only having two cycles.

So I’ll raise my glass and toast to the next season which is just a few months away.

Fight2

OK, F2, life will be a cultural vacuum until August, but I'll cope somehow.