Week 13 & Round 3

So after rescheduling round 3 I started to feel a bit better. Then on Sunday I felt really off - like I needed more steroids - and this only happens when my body is under a great deal of stress. All I could think was "great I'm probably going to get sick again"... lo and behold by Sunday night I was ill. Hard to say what it was - but I felt horrible like very achy and flu-like with some nausea. I did not sleep a wink Sunday night - my husband also felt horrible. On Monday I was really aggravated because I was set to leave again for treatment on Tuesday. I then found out that there was a horrible bug going around my daughter's school - 6 of 8 teachers had been out and about 1/2 the kids. It seemed to be what we had - adults were really achy and fluey with stomach issues and the kids seemed to get more out right vomiting.

Anyway I was completely stressed out but my husband reminded me that I've never felt great while going to get treatment so I decided to go. I flew out on Tuesday and was feelng slightly better. When I landed I found out that my poor daughter had slept much of the day at school with a stomach ache. So she got hit as well. My husband took a red eye out that night and met me Wed morning (the saint that he is) to take me to treatment.

So on Wed I received round #3. It went pretty much the same as last time -I started with fluids, steroids, benadryl & tylenol. Then about 1/2 way through my Rituxan infusion I started feeling like I was having a hard time breathing - this happened last time. They stopped the infusion and gave me more benadryl (which when given via iv also makes me feel a bit funky) and then let me sit for a bit. Then we were able to get the infusion up and running again. They were able to get the rate up to my max of 350 (I didn't like 400 the time we did that).

A difference was that this time my stomach pain started during the last hour of the infusion. I have been doubling up like crazy on ppi's and antacids trying to stave off any gi upset this stuff causes me. But I don't know if it's going to get really bad again - and I don't know when that would be. The first time it took 2 weeks, the second time was immediate because I was already in pain and this time...? Sort of nerve wracking not knowing when that pain will hit. 

That night I had a hard time sleeping as I knew I would (big dose of steroids makes me 1) angry and 2) have insomnia). I drugged myself with some benadryl though to get some shut eye. The next morning I was absolutely exhausted - thankfully the hotel was nice enough to give us a very late check out since our flight wasn't until evening. So I slept all morning and then pulled it together for the flight. Other than the idiot sitting next to us storing his clam chowder in the overhead bin for 3 hours of our flight (who does that??? and then eats it!!??) the flight was fine. I'm severely allergic to seafood though so was less than thrilled when he pulled down his chowder mid-flight. Seriously. Who does that?

Today has not been great - I'm glad to be home in my own bed and I know that it will take me a couple weeks to feel more 'normal' and I know that it's going to go downhill before coming back up. This morning I think I forgot that i had treatment - or that I should be taking it easy - and was up making breakfast, etc. Then I was very very tired and very very dizzy and just felt really icky. Some nausea and definitely breathing problems. So more benadryl, tylenol & a nap. This evening I was really having problems feeling like I could breathe. but benadryl is helping so my guess is that it's a reaction of sorts and hopefully in a few days will be on it's way. Not being able to breathe was my first symptom when I first became ill - so I hate feeling it. Just trying to remember that I need to give everything a couple of weeks and that I'm sure this next week is going to bring more worsening of symptoms and I 'll just have to deal with them.

On a side note, I spoke w/ my friend who works over at Genetech (on the oncology side) and was told that the protocol that I am doing - essentially every 3 months - is extremely common in oncology for maintenance. So it's not too surprising that a couple of oncologists were the ones who put together this protocol for CFS.

Round 3 Rescheudled

I barely slept last night and I'm not sure if it was because I was too cold or too hot, but either way when I woke up today I still felt horrible and very warm. I made the call to reschedule round #3 - I was not up for flying across the country to be told they wouldn't give it to me in my current state. So I have rescheduled for next week. Probably for the best but frustrating all the same.

Week 12 - and next round?

Just a very quick update. I'm supposed to be getting on a plane tomorrow morning for treatment on Friday. I say supposed to because I have been under the weather - we've all been fighting something in this house and I've pushed it this week. Today I was experiencing chills and just feeling really icky. I cancelled an appt with the new GI so that I could stay in bed. I'm still hoping to go tomorrow, just need to see how I am.

This past week has been ok - it was my daughter's birthday earlier this week so I had to pull it together for a birthday party / outing with some of her friends. That on top of shopping earlier in the day plus having chills. Some how I mustered through but am paying for it.

Abdominal pain has been decent/manageable. I was interested to hear what the GI had to say about it although I get the feeling I"m going to get some of "Rituxan??? For CFS??? That's a strong drug." Yeah well, CFS isn't exactly some little minor thing if you are really and truly sick with it. My appointment is rescheduled for next week and maybe that's a good thing because maybe I'll be in bad pain again from this round (I'm assuming it is going to cause worsening pain). 

Speaking of which it is very hard to get excited about doing something that you know is going to make you feel icky. Just trying to have faith...and hoping all goes well.

Week 9, 10 & 11

I am sorry I am such a slacker on updating here. I really regret putting this off so long. I've started and stopped this blog and it just keeps getting longer because more time has passed. I apologize for how long this is and how disjointed it might seem as I have written it at various stages in the past couple of weeks.

Had I posted 2 weeks ago I was going to post that things seemed to be returning more to my 'normal' and that I was going about my days as usual. I did start to develop a few more tiny painful blisters on my right ring finger (same finger as before) and this is about the same time frame as when the first round started - about 3 to 4 week post-infusion. Luckily they have not progressed and no more have formed.

Most notable from week 9 is that my crash from the motorized bike ride was short lived. At least by my standards. I had fully expected to be feeling it for a good week. Maybe I didn't overdo it as much as I thought I did or maybe I recovered better but I was down and out Saturday and figured I would need to be in bed all day Sunday as well. That didn't happen just because I had too much to do and then Monday I had appointments and had some errands to run. Surprisingly I did ok. I mean I didn't feel awesome - I never do - but I wasn't in a huge crash like I had been. So that was nice.

We ended up going out of town on Thursday with some friends for a long weekend. Before we left one of my teeth started killing me. I've had a horrible time with dental work this year, all brought on from long term steroid use. I've had to have 3 teeth pulled and about a dozen root canals. The tooth that was bothering me was a tooth that had been root canaled but which the pain had never gone away from and was getting much worse. I went to see the dentist (he did not do the root canals) who took x-rays and said it was possible that there was a small infection near the tip.  Because of my immune system he prescribed antibiotics and I made an appt w/ my endodontist to take a look at what is going on.  I wasn't too excited about taking antibiotics because of my stomach pain but spoke with my Dr. and she agreed that I should take them.

So off we went on our trip; the stomach pain wasn't horrible. I mean I didn't love being on the antibiotics but did ok. My family and friends did some amazing hikes. I found some beautiful places to sit and take in the view. here's a sample of what I was lucky enough to see.

One issue I had was that the altitude was slightly higher than where we live. I have a hard time with high altitude mainly due to my adrenal issues. That meant I had to up my prednisone a bit which wasn't ideal but again, I did what I had to do. One day I tried to join everyone for what normal people would consider a super easy and short hike. I probably walked about 1/2 mile all together. There was a short steep incline that was very difficult. It made me a bit sad to realize how out of shape I was with my heart pounding like it was going to leap out of my chest. I sat down immediately and was very worried about PEM but I just rested while they completed the hike and then joined me for lunch. No major PEM to speak of but I was pretty exhausted from the weekend in general.

My teeth/mouth pretty much killed over the weekend and I'm not sure if may have had something to do with altitude changes. On Tuesday I saw my endodontist about the teeth pain. He did not believe I had any infection and really feels like I am having an inflammatory response. Again, the Rituxan seems to be causing these weird things happen - just like the horrible abdominal pain with no real reason. Or the blisters on my fingers. I was then sent to the oral surgeon to discuss a bump I have inside my mouth and to talk to him about the pain I'm having. The bump seems to be a fibroma and probably isn't going anywhere. He really didn't see anything wrong with my teeth but I did have a new sore in my mouth that he prescribed some rinse for.

(In hindsight it could be that I was at a higher altitude over the weekend that caused pain in some of my teeth).

One of the biggest things on my mind has been when/if to get another round of Rituxan. My CFS doc thought it might be worth waiting to see if I respond at all before getting another dose. My endocrinologist thought I should go ahead with it. I got in touch with my prescribing doc at the end of last week and he thought I should get it now and then we can reassess.  So I've booked my next infusion for next week. If I'm being honest, I'm not all that excited about it. It's hard to get excited about something that you know is going to make you feel like crap. And again, if I'm being honest, it's hard to be excited about this treatment when I haven't heard a lot of positive stories.

This week my whole family has been sick. I've also been very itchy. All over. The bug we have is like a cold but with waves of nausea. My daughter was home for two days at the beginning of this week and I've just been extra run down. Saw my ENT as well who thinks I do have a sinus infection going on so was put on a different antibiotic. Saw my dermatologist who was not overly concerned with the itching although did say that theoretically when the b-cells start to repopulate they could be overly active and cause itching. he did not think that the timing was right for this (3 months post first infusion) but since we have not measured my b-cells it is hard to know. Told me to try a different antihistamine and see how I do.

My most persistent symptom has been abdominal discomfort. It almost feels like it could be my liver. Although all blood work and scans have been fine for my liver, where I hurt is definitely in the pattern of a liver. I see a new GI next week but doubt there will be any new news from that. Hoping just to have someone on board to consult if/when things get bad again as I assume they will post-infusion.


Also I've had joint pain - mainly in my hips/sciatic region. Off and on - mainly off. But definitely is only since I started Rituxan.
Today the sinus pain is feeling a bit better. Hopefully am on the mend.

Will leave you with something I saw posted on facebook today and really identified with. What other choice is there?