You go and get aggressive with treatment: Show that cancer who’s BOSS!
Keep your chin up, man. Here’s some random internet sympathy for you. I know how shitty it is to be down and I know how nice it is to find out people give a shit.
I can’t speak for everywhere, but in my area people who can’t afford that are eligible for medical transport services provide by Medicaid/Medicare/etc. Check with your health insurance - it may also provide for this. If it continues to be a problem speak with the social worker at the hospital, or ask your oncologist’s office about such services. If you don’t feel you can trust family members, or feel they’re unreliable, those might be routes to getting transport when needed that is acceptable to all parties.
I’m very sorry to hear it.
Hi budda_david
I too was diagnosed with Hodgkin Lymphoma Nodular Sclerosis Subtype Stage II A (if I recall correctly) back in December of 2008. I had 6 rounds (12 treatments) with the ABVD protocol. I’ve been in remission since finishing treatment. When I went for my first treatment, the nurses were like, “Oh you have Hodgkin’s… you’ll be fine.” I hope you get the same reaction. 
Get a chemoport if you can. It makes the whole process so much easier. It can be used for chemo treatments and for blood draws which you will have many of in the next few months. I didn’t have a terribly bad reaction to the chemo… just felt kinda motion sick for the day or two following treatment. Didn’t loose all my hair, but it did get very thin. [kinda cool (dark humor) sidenote: I could track my chemo treatments on my strands of hair. Thick bands were weeks without treatment and thin bands were chemo weeks.]
Anyway, don’t mean to make this about me, but feel free to ask questions and know we are out here pulling for you. If you’d rather PM me, that’s fine too.
All the Best.
SA
Hi, buddha_david, I’m sorry to welcome you to the cancer club! It’s interesting that your eczema was a symptom of your cancer because rosacea was a symptom of mine. I guess the immune system gets overwhelmed.
I also understand wanting to keep things private until you’re ready to handle it. When I was diagnosed the first person Mr. H told was his ex-wife (who secretly/not so secretly hates me). I was so angry with him. I wasn’t ready to deal with anyone else knowing, but if he had to talk to someone, why not his brother or uncle? Why HER? WTF?! My advice to you is just deal with what you want and forget the rest. You’re under no obligation. I dealt with the ex’s passive/aggressive bullshit by telling her I didn’t want to discuss it. She was pissed but that’s ok. This is your deal and you get to call the shots. Screw anyone who thinks otherwise.
The very best of luck. There are a couple of us here who’ve dealt with cancer, so please feel free to post. Or you can contact me by PM. Don’t be afraid to ask for support. Sometimes faceless, removed support is the best kind.
Random Internet Stranger (RIS) checking in - all the best wishes in the world. My deepest sympathy that this is happening to you. Do come back and tell us all about it. I’d like to know how it’s going. Please let us know if there’s anything we can do (like send cards, notes, pictures of the mods - I was saving mine for “special circumstances”, but anything for a friend in need).
{{{hugs}}}
I’m so sorry. Hang in there, and don’t forget we’re all here if you need to vent / bitch / seek sympathy.
And yeah, just be strong.
Sorry to hear about this. Just remember that the reason that MAB treatment is not first line for Hodgkin’s is that standard treatment has a good success rate. Yes, it will suck, but non-Hodgkin’s is worse.
Been there, it totally sucks. The surrounding drama BS sounds like a pain in the ass, I hope that gets worked out.
Good luck with treatments and don’t forget to keep laughing.
So this morning I spent a couple hours talking on the phone with a person who’s known Mr. Blabbermouth for nearly as long as I have. Basically, regarding his behavior, it comes down to “That’s what he does…” and since nobody’s ever told him to stop doing what he’s doing, there’s little hope of confronting him about it. And I’m certainly not alone – last year, an aunt was diagnosed with Stage IV Lung Cancer (after she had quit smoking 20 years ago – now that’s life kicking you in the nuts!) and shortly after her diagnosis, she confided in him a few details but asked not to say anything to anyone. Naturally, he ignored her and went wide with an email to everyone, which is how the rest of the family found out about her illness.
Needless to say she was NOT happy. I don’t think they’ve spoken since, and frankly this was the first I’d heard about that confrontation.
Now here’s the really weird part – this person I had the phone call with today, as of seven years ago, had basically declared me The Devil Incarnate. Sparing the gooshy details, our conflict made Donald Trump and Kim Jong-Un look like chums. She’s also had her own experience with Stage II Breast Cancer, with chemo/radiation quite recently, so I guess it must be an “enemy of my enemy” type thing (probably just as much with her ex-husband as it was with the cancer?) I don’t know, I didn’t bother asking and based on what happens in the future, I might just let bygones be bygones. In any case, that part was really unexpected.
On the contrary, I’d love to hear from people who have gone through the same experience, especially if it’s the exact same disease & treatment! I’ll have to send a PM soon.
Another update – this morning, I wrote up a long(ish) email and sent it out to all the family members that my Dad’s been telling stories with so far. Only two responses were received, and I strongly suspect that both merely skimmed my letter and completely missed the part about how I will need chemo vs. Dad’s magic fairy pill. The first one thanked me for the “entertaining update” and said he was glad it wasn’t that serious; the second also praised my writing skill and suggested I start a blog. I know both responses sound disgustingly flippant, but frankly, I’ve known both these people all my life and I’m guessing they’re both just enthralled by someone who’s essentially an emotional vampire. It’s actually a good fact to know.
Cancer sucks. Ask me how I know this. And my prognosis is excellent.
Hugs to you, and hope the other situations work out in the end.
Sending good thoughts your way, buddha_david.
I was diagnosed Hodgkin’s stage IV NS back in summer 2001. Also had ABVD, for 6 months, followed by remission ever since. Sounds like you caught it earlier. Chemo sucks and everyone responds differently, but I didn’t find it too bad. I went back to work during treatment. Lost some hair but not enough for most people to notice. Don’t freak out when the Adriamycin makes you piss pink.
Antiemetics are your friend. They gave me Zofran IV with the treatment, don’t know if they have something better nowadays, but I think I threw up once the whole time. Try to eat well and supplement with Boost or something similar.
Never a diagnosis you want to get, but at least Hodgkin’s is very treatable. Go kick its ass.
I’m sorry for all you’re going through, but I’m betting you have what it takes to come out better on the other side of this.
Thanks for sharing, as always, I’m happy to hear about anyone’s who’s been there and come back, especially those who’ve had a (relatively speaking) easy time of it.
Question about staging: You said you were stage IV, what does that mean exactly? My doctor was oddly mealy-mouthed when I asked about staging, said I was “probably” somewhere between IIIb and IV, and that there might be some spread to the bone marrow already :eek: but he wasn’t be sure. Maybe I read too much into it but there was something ominous about how he said it…
Do they automatically give you Zofram or do you have to ask for it?
It’s been a while, but IIRC stage III affects lymph nodes above and below the diaphragm, while IV means it has metastasized to one or more organs outside the lymph system, possibly including bone marrow. If you have to have a bone marrow biopsy, I’m not going to lie, that hurts like hell.
I also had a meriastinal mass and B symptoms (night sweats, weight loss, etc). So basically as far as you can go. Saw many docs who diagnosed a number of things, but like your experience, didn’t find the root cause. By the time it should have been painfully obvious something was seriously wrong, bone marrow involvement caused my blood counts to drop severely, and I was too hypoxic to think clearly enough to seek help. Still bounced back though. Not trying to make this about me, but hopefully my extreme case can give you some encouragement.
Zofran was automatic, as far as I know. When I was inpatient I was totally out of it and signed a POA so my dad could make my decisions, so he may have opted for it. They also gave me solumedrol with the treatments, and a prilosec prescription to counter gastrointestinal side effects of the chemo. The cocktail worked well enough that I would sometimes wheel the IV pole down to the hospital cafeteria during infusions and gorge on pizza and burgers.
Agree with the poster above, get a port if you can. A brief bit of pain when they access it, but you won’t destroy your veins.
Only lasting effect I have had has been a bit of numbness in the feet which remains with me to this day. Not sure if the illness caused that, or the treatment.
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Yeah, sounds like you were further gone than I was – aside from the weight loss, night sweats, pain & swelling and the itchiness, I haven’t felt sick at all. Still have a decent amount of energy, in fact this thing has helped kick my ass into motion out of my normal sedentary state (against my will, of course…) It’s also true that my doctors honed in on the cause of my malaise very quickly, no misdiagnoses or diversions at all, aside from the HL vs. non-HL thing.
Funny thing about night sweats – they were extremely disruptive for a long time, but I discovered I could greatly mitigate then by taking a single melatonin pill every night, six hours before bedtime. Didn’t eliminate them entirely, but made them MUCH more manageable. What makes it funny is that this was something I came up with on my own, and I have yet to find anything on the Internet recommending melatonin as a treatment, in fact there’s many cites that claim melatonin causes night sweats! So, yay for my contribution to science! 
Wishing you only the best.