I started Chemotherapy this week!

[Bob65]

Hi, Bob here,
I had been on pins and needles since I was diagnosed with WG to get started on chemo. It seem like they spent to long getting me started but now I know why they do the things they do. The first chemo treatment took almost 6 hours, I slept though about an hour and a half and the rest was reading, chit chat with my new chemo buddies and watching the stuff drip. I was given, Cytoxan, Solu-Medrol, Ativan and Zofran. I didn't get nauseated but I got very tired. It's been 4 days since my treatment and I'm still doing pretty good. I had a little nausea last night so I went to bed early. I'm beginning to see a lot of brown spots on my arms and hands. My body has become alien to me with all of the water retention. I will have to ask my DR if I can take water pills. My joints are begining to give me pain again. I had not had very much pain after I started the Prednisone but now its back. It hit my left hip and left thumb yesterday. I don't know what to take for pain, doc said no aspirin with the Cytoxan, I took some Tylenol Arthritis but it didn't touch it. I probably will start getting more side effects in the days and weeks to come but so far so good.

[RCOSSIO]

Bob,

Why infusion...just out of curiosity why not the pills? Just curious to see if your Rheumy thinks infusion is better. Although I take Cellcept, when I was first diagnosed with WG my first and only treatment was infusion and then I was switched to Cytoxan pills after my Rheumy suggested that it would work better (yet have greater side effects).

I am sure your doc knows best, just curious to know

[Bob65]

Richard
Bob here,
I have had problems with my kidneys in the past and some surgery, my Rheumy and my Oncologist felt that my kidneys were to fragil for the pills. Because the WG has also attacked my nervous system they are giving me extra chemo for that and it can't be done with pills. My Oncologist is presently treating three other WG patients with chemo. I was told I could not take aspirin for pain and my joint pain has returned. Tylenol does nothing. What do you use with Cytoxan for pain? Thanks Bob

[Sangye]

Bob, the pain is due to the Wegs activity. As the chemo starts working, the pain should get under control. Aspirin or ibuprofen with pred is very dangerous. Tylenol is your best bet, but it isn't safe to take it on a regular basis (very toxic to the liver). Especially when you're on chemo, your liver is already getting overloaded with toxins.

I just tough out the pain, even though I have severe joint pain as one of my main Wegs symptoms, because I don't do well with painkillers in general. They all give me terrible migraines and don't touch the pain. Your doctor must have something better to give you.

Be very careful with diuretics. Your doc will probably give them to you, but to be honest, they don't do much when you're on high dose pred. They also cause you to lose potassium and can really put you at risk. Pred causes you to sweat a lot, and the combo can make you lose electrolytes quickly. The water will come off as you lower the pred. The weight won't, but the water retention will.

[jola57]

Wish you the best with the chemo. Water pills are tricky and with all our other problems why mess with them. Unless they are medically indicated I would not touch them. The swelling will go away when pred is done with.

[RCOSSIO]

Bob,

When I was taking Cytoxan...i just took Tylenol. I been off Cytoxan for 6 months now...however if the pain is severe enough, I do remember taking Percocet a year ago for jaw pain while undergoing treatment. Ask your Rheumatologist....hope this helps!