Stage 1 of Hodgkin's Disease is the very early stages of cancer developing in the lymph nodes or an organ, almost always in the upper parts of the body.
Stage 2 is the start of spreading to multiple lymph nodes.
Stage 3 is the cancer spreading to below the diaphragm.
Stage 4 is the cancer now spreading out of the lymphatic system and infecting other tissues, multiple organs, etc.
You can find the info at the Cancer Center .
Patti has Stage 3a Hodgkin's Lymphoma. What does this mean? One of her first tests was a PET scan that allows the doctor's to see where the cancer has spread if anywhere. It first started in the now large lump on the right side of her neck. It has spread to almost ring the entirety of her neck; there is one area in each shoulder; a large spot near the heart and finally two nodes near her pelvic region that are in the early stages. 3a means that it has spread below the diaphragm but only just. Is it serious? Cancer is always serious, but luckily we still caught it while it's only in her lymphatic system and not spread to her other organs and tissues. Now we have to start chemo.
What is Chemo? I've known for years the vague general meaning of chemo: The use of it may cure cancer, but also makes the patient weak and disoriented.
The Oncologist trying to explain it the first time with the two different treatments got me a bit more confused:
'The drugs ABVD or was it ABBD no it was ABVD gets replaced with ABAD no no it's AAVD."
Sorry Pat, I cannot solve the puzzle.
Standard Order of Chemo Drugs:
Adriamycin
Bleomycin
Vincristine
Dacarbazine
Experimental Order of Chemo Drugs:
Adriamycin
Adcertus
Vincristine
Dacarbazine
So the difference is just one drug. That difference, though, eliminates a side effect that can be very dangerous: deterioration of the lungs which can be caused by the use of Bleomycin in 10% of patients. Now the treatment of ABVD has been used for decades and is the standard way to have this particular cancer go into remission and then cured. AAVD is a relatively new treatment process still in the experimental stages in the USA, although it has been used for years in Europe.
Now just wait, before you say: "Why would you risk your wife's life on an experimental drug?" Let me explain:
First and foremost this is Patti's decision, I may put in my advice but she makes the final decision.
Second and and most importantly, it has been in use for years in Europe and is only being experimented in the USA because it is new. It is in Stage 3 of 4 of testing which basically means it's ready for common use. It seems drugs of these types rarely get to Stage 4 because that usually means they are searching for multiple ways of consumption, pills, injections, etc. and it won't get that far. There are 10,000 patients in this chemo treatment plan. Not everyone gets the new drug and we don't know if we get it yet either. 50% get the old way, and 50% get the new way to see how effective it is. We won't ultimately know until they put Patti's name in the randomizer 48 hours before her chemo. We will be told the drugs that we are getting, there is no sugar pill, no matter what treatment we get, Patti will be getting chemo.
Each drug comes with it's own side effects and there are a lot of them: Fatigue, nausea, White T-Cell count lowering, etc. There's even one that may cause constipation and another that may cause diarrhea; that should be an interesting experience. I won't go into all of them but if you want to know more, the Cancer Center can teach you more. One of the things that affected me the most was the chance of infertility. As a father of a beautiful boy I always thought we'd have at least one more child, hopefully a girl and hearing that there is actually a good chance we can't have anymore is kind of hard to take. Patti actually seemed to take it in stride saying we could always adopt. I won't speak to how she really feels because as a husband and a man I wouldn't know how she is feeling about it, maybe she should do her own blog post hmmmmmmm? :)
Sorry, bad version of the 'Meow' joke |
The most noticeable effects will be fatigue and hair loss. The other side effects will only last for a little while after the drugs are injected but all of the ones she gets will build up over time and of course you can't exactly grow your hair back between treatments. The doctors assured us no one gets all the side effects and they vary in their strength, they'll come and go but they are accumulative so even though Patti may get closer and closer to being in remission she may start looking more and more worse for the wear. Of course knowing Patti she might shrug off chemo like it's a minor inconvenience so here's praying that it's the latter.
So over these 4-6 hours Patti will be in a very large room, basically a lobby full of chemo'd up people separated by curtains for a bit of privacy. There are snacks, drinks, comfy chairs and nurses all around to make sure everyone is doing alright. Each drug will either be dripped in or pushed through. The reason for some drugs being pushed through is the fact that they actually have a chance to cause pain in the form of possible chemical burns if anything gets on the skin. With the port that was implanted this makes the chances smaller that Patti will have this reaction but there is still a small one that some droplets my leak out right around the port area. With the other drugs they are pretty much harmless going in so they will be put in via IVs.
During this time family and friends can come in and visit. If you want to comfort Patti, talk, chat, giggle, feel free to stop on by. No one is obligated to stay more than they want, don't feel guilty even I might go into work for a few hours so I don't use up all my sick time :) but also don't be afraid you are intruding: call, text, email, FB, whatever, if you want to stop by and if Patti is feeling up to it she will love to have people to talk to! We will post the dates as we get them with the first being November 26th. We'll also tell you when we're there, where we are and how long about we will be there. Just remember you do have to pay for parking, which you can get validated (just makes it a bit cheaper) and there is also valet right in front of the hospital (so bring cash for the drivers), but good luck with that, because dem valet drivers be ca-razy!
That's about it from this ultra long post, thank you again for reading.
Love,
Chris and Patti!
If it were me, I would add a lil external, natural strength to help balance out Patti throughout this ordeal. I use this every single night; I think it's for those who don't have time or are able to drive to an alternative medicine provider:
ReplyDeletehttp://www.spoonkspace.com/How-to-use-Spoonk
I'm sorry, you guys, I mean well, but I don't wanna get annoying........
ReplyDeleteThen again, no one else commented yet, so I hope you don't mind. What's hospital food like these days? My dad spent the whole day there today - almost fainted, we still trying to figure out why. They said his heartbeat is a lil weak......