Hives???

[talentx7]

My son had his 2nd dose of cytoxan last Tues. We did blood work last Wed. His WBC count was at a 1.2. He said that was pretty low and to keep him away from others and to repeat blood work this Mon. (12 days after) Well, sat. morning he woke up with hives over his back, chest, arms, and face. I called dr., he told me to benadryll him every 6 hr. Went to bed last night, 10 hrs. later, woke up with hives again. Called dr., said more benadryll and add zyrtec. Anyone have any idea why, no med changes or anything different. Is it because his WBC count? Dr. did give me an answer, i'm not sure he know either.

[pberggren1]

I would ask more questions.

[Sangye]

I don't see how a low WBC count would give him hives. It may be a reaction to one of his drugs.

His WBC count should not be falling that low on ctx. I know my Wegs doc didn't want mine even falling into the 2's. A count of 1.2 is more like what you'd expect with a cancer treatment dose of ctx. I think you need to ask the doctor about both issues.

[talentx7]

Yes sangye, they were surprised to see his WBC count go so low. When he had his first dose in the hospital it only went down to 7.0. I am not sure if they gave him a stronger dose this time or not. He started at a 16.0, so to drop that much, I was shocked and very scarred for his health. As they have us keeping him home and away from everyone. I heard that they drop cancer paitents that much though. I wonder if that is why he was so sick this time. He threw up for 3 days after ctx, when he didn't have any problems in the hospital. As for the hives, i don't get it. He started a BP med 1 week ago. The Dr. thought that was possible, but unlikely. . But no other med change at all.

[Sangye]

Call a pharmacist to ask about the BP drug and also if the hives could be from the ctx. They often know the drugs and side effects better than the docs.

I hate to say this but you really need to make sure they gave him a Wegs-strength dose of the ctx and not a cancer-strength. Call the infusion clinic and talk to the nurses who did the IV. Mistakes like that are not unknown. The combo of hives, vomiting and sudden decrease in WBCs is alarming.

If they gave him the correct dose, it may mean the ctx is too toxic for him. It was for me. Both times I was on it it destroyed my bone marrow faster than I could make it. I knew something was wrong because it made me incredibly weak and took me months to bounce back. When I took it last summer I couldn't even take a therapeutic dose (ie, the dose based on my weight) because of it. Dr Seo was very good about watching the trend and stopped it before it was too late. He said I can never have it again.

[jola57]

I have hives. Not as badly but mostly on my face. I hate taking drugs so I do not take benadryl or other drugs, it clears up with or without them anyway, then the cycle repeats. I noticed that it is mostly whem I take my mtx. But then I suffer from hive for a long time now and I have gotten used to it. I cary a concealer in my purse and just cary on. In your case I would talk to your doc about this. It looks like a strong reaction to something. Check with the pharma as well.

[talentx7]

The drs. think it was a reaction to his BP med. A little weird that he had taken it for 5 days before the hives, but that was the newest med. We changed to a new BP today, we will start taking it tomorrow. Hoping for no hives!!

[Sangye]

Jolanta, I wonder if it's rosacea. I've been having increasing trouble with symptoms the past few months that I feel are rosacea. I have black mold in my basement (just discovered a few weeks ago) and have to move out. While I was hospitalized all the symptoms cleared up.

I also noticed that following a Pitta-pacifying (fire-reducing) diet helped tremendously. Rashes and hives are a fire imbalance.

I'm looking for a new place but having difficulty. There aren't other options for me in terms of temporary housing, even though I'm fully aware of the dangers of living with mold.

[drz]

I don't see how a low WBC count would give him hives. It may be a reaction to one of his drugs.

His WBC count should not be falling that low on ctx. I know my Wegs doc didn't want mine even falling into the 2's. A count of 1.2 is more like what you'd expect with a cancer treatment dose of ctx. I think you need to ask the doctor about both issues.

My rheumatologist stopped my Cytoxan when my WBC got under two. He wants to keep the WBC around 4 or more to try reduce complications and infections.

[Sangye]

Yes, my counts fell way too low also as my bone marrow was failing. I had to stop ctx because of it.

I meant that the doc shouldn't allow the WBC count to fall so low. They have to decrease the dosage or stop it altogether. Some people just can't tolerate ctx.

[pberggren1]

I'm so sorry to hear that you have to move beacause of the black mold Sangye. This puts so much stress on you.

[talentx7]

Carter goes in this tues. for his 3rd round of cytx. Drs. say they will lower this next does, they said "he got hit a little to hard last time." They are checking blood work before to make sure he can handle this next dose. He was at 2.6 WBC count last week. I am not sure how fast he can recover. Also, almost 3/4 of his hair has fallen out, we are shaving his head, along with my other 2 boys and husband in support. Dr. said his hair would thin, but this is ALOT......sorry about the mold, hope u find a place.

[pberggren1]

I forget how old Carter is?

I also forget why he isn't taking the oral dose of Cytoxan which is usually considered to be much more effective?

[Jack]

Sangye - not sure what your rights are over there, but in the UK you can get various government agencies involved if there is a health risk and the landlord has to put things right. If he fails to act, you can get the work done yourself and deduct the cost from your rent.

[Sangye]

Talentx7-- I've never heard of severe hair loss like that with Wegs-level ctx. Please check the dose they gave and watch this like a hawk. Question the nurse, look at the orders AND the IV bag itself when it arrives, to verify the dosage. I do these things myself every time.

Jack, my landlady is quite happy to make the repair, but it's not feasible with me living here. And if I were to move out temporarily, the entire room would be filled with black mold when they open the wall. The contractors know how to do it properly, but it isn't possible with someone living in here like this. It's just a one-room basement.

[elephant]

Sangye where can you go?

[Sangye]

I just need to find a new place to live, that's all. It's not a big deal. Please don't worry about me you guys. :)

[talentx7]

Sangye, my husband is at the hospital now going over all the doses he has gotten, and what he is getting today. They gave him ctx this morning and hydrating him now. His WBC was up to 15.30 and nuetraphills up to 1300. Also his creatine was up from 1.4 last week to 1.7 this week. Does that seem like a flare?? Could his blood results be different because he was drawn at a different lab? Or because we lowered his pred dose from 60mg to 50mg? I am panicing now he is going to get really sick again.
Pberggren, Carter is 8. I didn't know he could take ctx orally. Dr. never gave me an option.

[Sangye]

So glad your husband is checking on it today. Ctx usually drops WBCs quite quickly but pred causes them to elevate. So maybe the pred is winning right now. They should be able to tell what's going on. I don't know much about kidney stuff, so I can't say if that creatinine increase is still within tolerable limits. I do recall hearing that ctx can be hard on the kidneys, so maybe it's just reflecting that acute stress.

Some lab tests vary by labs. WBCs don't. I'm not sure if creatinine does. Maybe someone else can chime in on that one.

My best advice is this: As impossible at it seems, try not to panic. Question the doctors like a fiend but listen to your gut more than anything they tell you. Stay in the present moment as best as you can, and don't allow yourself to leap into the future with what-if's. It's a very tall order, I know. But it's the only way to cope with the continual anxiety of dealing with Wegs. As you stay calm, Carter will stay calm and have lots of strength for healing. Hugs to you, brave Momma. :)

[DEE]

Carter is 8. I didn't know he could take ctx orally. Dr. never gave me an option.
ive been taking oral ctx on a daily basis for several months monitored by wg consult on a monthly basis not sure what the difference is / but i seem to tolerste it this way so far DEEx

[DEE]

oops time for bed spelling gone preds tasken over again meant tolerate DEEx

[drz]

Sangye, my husband is at the hospital now going over all the doses he has gotten, and what he is getting today. They gave him ctx this morning and hydrating him now. His WBC was up to 15.30 and nuetraphills up to 1300. Also his creatine was up from 1.4 last week to 1.7 this week. Does that seem like a flare?? Could his blood results be different because he was drawn at a different lab? Or because we lowered his pred dose from 60mg to 50mg? I am panicing now he is going to get really sick again.
Pberggren, Carter is 8. I didn't know he could take ctx orally. Dr. never gave me an option.

Creatine levels can vary a few points I think without indicating a definite trend. I think they call it standard error of measurement since it is like BG readings for diabetes which often vary 5-10% just through retesting. My creatine readings have ranged lately from 1.3-1.9 but overtime the general direction will tell you if trend is up or down but one reading probably isn't significant unless it is a big change. When my WBC goes up it usually means I have a bladder infection. Then they put me on IV for antibiotic and to hydrate me plus flush out infection.

I think there is a reading for inflammation which might be more useful to learn about flareups but I count on doctors to interpret these for me even though some don't know how.

They put me on oral Cytoxan because they said it would be safer and easier to adjust in case of reactions and side effects. I am on 100 mg right now but was up to 150 till WBC bottomed out to 1.4.

Best wishes for success. It has to be more difficult to watch someone young fight this horrible disease.

[Sangye]

The 2 tests for inflammation are ESR/ Sed Rate and CRP/ C-Reactive Protein. The CRP is much better at detecting quick changes, like a developing flare. However, in some of us sneaky types, our inflammatory markers stay perfectly normal until the disease is highly active. My own don't go up until my lungs are full-blown hemorrhaging.

Talentx7, I'm assuming the reason they have Carter on IV ctx is that he's too young to swallow the pills? They're quite large. I don't know if they come in another form or can be prepared by a pharmacist for a child. Worth asking, since oral ctx is more effective than IV--at least in adults.