I finished my last round of chemotherapy (CHOP+R) for non-Hodgkin's lymphoma about six months ago and am starting to feel very good again. I'm in remission and will hopefully stay that way. The experience was the pits but at least it wasn't the horror show I had expected. The good news is I feel like myself again; I'm back at the gym and making music too.
Unfortunately the tiny bit of KS I had before the NHL is starting to return worse than before on my foot and now on my toes. There are about 8 or 9 lesions, the largest is pea-sized (before there were only 3 or 4). I understand from you that this might be due to the Prednisone I was on during my treatment. Regardless as to why it has returned, I'd like to ask you about Panretin Gel. You often recommend it but Im very confused because my doctor said its only supposed to have an 18 success rate and the few patients he administered it to had really bad experiences and stopped using it...terrible skin flair ups, pain, etc.
Aside from my lymphoma episode, my general health at 40-years-old seems good as are my numbers (0 VL, 400 tcells). My lesions are small but if left untreated I can see how in time they might make walking difficult besides, I want them gone, especially if its possible to rid my body of KS to prevent future outbreaks internal or external. Incidentally, I did have one large KS node removed from my groin 4 years ago.
Here are my questions:
Would you please explain the pros and cons of Panretin Gel and how useful it has been in your practice? Please be as detailed as possible.
Does the fact that I had a KS node removed and the fact that its currently flaring up on my foot suggest to you that I should be aggressive with treatment and approach it systemically as opposed to using the gel?
Assuming you suggest I go on Doxil, how important would this attempt to control the KS before it gets out of hand be VERSUS giving my body more time to heal from the CHOP?
Thanks so much for your good advice. I took it last time and it helped. I decided to have six rounds of CHOP+R chemotherapy as opposed to three rounds and radiation. I'm glad I did for many reasons.
All the best,
An appreciative cyber-patient
First, congratulations on completely the lymphoma treatment. This is quite an achievement and you should feel good about yourself for having gone through it and for having recovered both physically and spiritually. It is very important that you stay on HIV drugs. That is your best insurance against a recurrence.
Second, indeed it is not uncommon for KS to flare after lymphoma treatment. Panretin gel is a reasonable option. you would apply a very thin layer twice a day. If you develop redness, then you can back off to once a day. It's been reasonably effective in my patients. If you KS becomes more widespread or aggressive, then I would indeed recommend systemic therapy and Doxil is a very reasonable first choice. It is a form a chemotherapy packaged in liposomes. These liposomes permit the chemotherapy to be a kinder and gentler approach to the treatment of KS.
In terms of recovery time, by about 6 months your body should be mostly recovered from the effects of lymphoma and the treatment for it. I wish you best of luck.