Rash from Topotecan


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09-20-08 08:20 PM
Rash from Topotecan

I am not sure how to spell Topotecan, but my 5 month old Wyatt has gone through 2 rounds of chemo now.  Each time he has gotten a rash in odd places.  The first time was worse and this second time we bathed him 3 times a day and it wasn't too bad.  The doctors said it is a very rare side affect of the drug and Wyatt probably has very sensitive skin.  The homecare nurse also just helped me change his Hickman dressing the other day and when she was pulling off the degaderm (clear dressing), a little spot of his skin came off and started bleeding!  I frieked out... also the hickman line had branded my sons chest with the lettering on it!  The nurse put some gauze under it this time and put a different dressing on it to try to help.  Every time he gets his dressing changed, his skin gets SO red and irritated.

Has anyone had this kind of situation before?

We go in for the harvest in a week or so... and then another scan before we start the 3rd round of chemo. 

After the first round of chemo, he was just fine.  After this last one, he threw up a bunch and didn't want to eat as much.  I am *** feeding him so this was tough on me!  Now his counts are at their lowest and he sounds like he has larengitis (spl?). 

This is all so new to me, and everything keeps changing on me each time... how do people handle it?


Eric (3 1/2), Wyatt (5 mo.) stage 4, Nmyc amplified... removed tumor and lymph nodes... nb found in bone marrow.

09-21-08 04:54 PM
Donna Ludwinski
Re: Rash from Topotecan

 Dear Eileen,

I am sorry for the late reply to this post!

I am so sorry for the difficulty of all of this. You have every right to be upset by all of this (!), especially with such a tiny baby. Today in church I held a friend's 5-month old the whole service--and thought of how incredibly hard it must be to go through all this with such a sweet, tiny baby who can't even tell you how he is feeling!

Even though my son was SO much older even the first time he went through treatment, he has definitely had some severe skin issues (both as a child and as an adult). I also freaked out when huge chunks of skin came off with the tegaderm!!! They also changed the dressing type and it was much better, so I am hoping you see a huge improvement.

I wish I could tell you it will stay the same each round of chemo. As you have already seen, sometimes it just gets complicated and they have so many different reactions, things are unpredictable. At some point we learn to expect the unexpected, which is NO comfort, I know.

It is good to keep records of what works and what doesn't! (See keeping records in NB Handbook.) For example, some anti-nausea (antiemetics) drugs may work well one round, but when the chemo changes, he needs a different combination. I will caution you though, often the early temptation is to give too many antinausea drugs and the children can end up over-medicated--and some of the side effects include inducing nausea! So it helps to keep track.Your gut is a good thing to trust when it comes to antinausea drugs with your child.

I am praying so hard that Wyatt weathers this storm remarkably well and you can see God's hand on him through it all. It is still hard my friend.

 Many prayers,

09-22-08 12:05 AM
Re: Rash from Topotecan

Hi, Eileen -

I have to agree with Donna - at some point you come to expect the unexpected.  It stinks!  It does not get any easier to handle when it blindsides you, but you learn to cope better and are thus better prepared to surge ahead. 

I cannot help you at all regarding the med rash but can possibly with the other questions... I'll tell you our experiences at least.

We got hives and very red/raw skin under & near the tegaderm surrounding our infant's hickman.  We met frequently with the hospital's IV specialists to figure it out with little help initially.  First we tried replicare under the tegaderm so there was minimal direct contact with skin and tegaderm.  The line changes took twice as long so get creative with cutting your replicare to size before you start on your wiggly little one.  We then ordered the clorhexadine without alcohol (thinking the alcohol was drying and irritating her already sensitive skin).  Finally, we started rinsing the site with a sterile saline syringe after the cleanser was applied but before applying the tegaderm.  That led to some improvement but it was still painful.  We were then told we could switch to a betadine cleanser instead, but were able to get her hickman removed about that time so never got to try it.

As for the nausea... we too had a different experience depending on the chemotherapy medications.  We were able to detect a general pattern though... so were able to taper off the meds when they weren't needed.  The Reglan/Benadryl liquid combination was horrible!  Trying to get a 9 month old to take 2 disgusting liquid meds on top of all the other liquid meds she was taking when she was nauseous and not wanting to ear was nuts.  The best thing we did was to switch to a dissolvable zofran pill.  At first they wouldn't prescribe it stating the pills only came in 4 mg dosages (we needed 2 mg for our 20 pounder).  However, the pharmacist suggested putting a pill in the freezer 15 minutes prior to her dosage so it'd be easier to cut.  Worked like a charm with a smooth (not serrated) sharp knife!  I think I could have quartered it if I needed to.  Even if one part crumbled...you'd still get three pills out of one. 

We learned that her general pattern was to be fine the first day or 2...then the nausea would start and last about 3 days before tapering off the next week.  About the time she felt better the neutropenia would kick in.  She hardly ate those three days but would nurse a little at least so try to keep up your supply with pumping during these times.  During the chemo, we noticed she became super sensitive to smells.  I thus had to quit wearing lotion that had any kind of scent or she would gag and not be able to nurse.  When tired/sick... we also found that sometimes nursing was comforting and sometimes she just didn't have the energy so we'd offer her a bottle of pumped milk instead.  It just seemed to take less effort for her.  Related to the smell sensitivity... she also would only take certain kinds of bottles/nipples so if your son won't take one bottle, try another one.   

Keep up the nursing!  It will save you a ton of heartache come fasting for scan times...I can assure you!  

Hang in there.  We're all rooting for you and Wyatt!!!!