w******i
发帖数: 1899 | 1 这几天请假带着怀孕的老婆孩子去了趟斯坦福癌症中心被诊断为 Mycosis
fungoides MF/IIB stage CTCL. 哭呀,伤心不已.望着大大小小的家.不知道如何
走下去.
去年去了同样的医院见到同样的医生说没事,你很幸运不是癌,今年就一下到了IIB了?
开始写抗癌日记吗？痛苦和恐惧交织在一起． |
l*h
发帖数: 4124 | 2 mycosis fungoides typically has a good prognosis until stage III.
was skin biopsy done last year? quite often multiple biopsies are needed to
catch the abnormal cells on slides. in many patients, it takes 5-10 years
from first symptom to be diagnosed.
了?
【在 w******i 的大作中提到】
: 这几天请假带着怀孕的老婆孩子去了趟斯坦福癌症中心被诊断为 Mycosis
: fungoides MF/IIB stage CTCL. 哭呀,伤心不已.望着大大小小的家.不知道如何
: 走下去.
: 去年去了同样的医院见到同样的医生说没事,你很幸运不是癌,今年就一下到了IIB了?
: 开始写抗癌日记吗？痛苦和恐惧交织在一起．
|
w******i
发帖数: 1899 | 3 我第一次测没有查到。今年查到了。就到IIB了。
刚拿到绿卡。 |
l*h
发帖数: 4124 | 4 what do you have now, large patches of plaques and papules? enlarged lymph
nodes? do you have nodules? any abnormal cells in blood?
what treatment do you have now? phototherapy? topical steroids? topical
chemo drugs?
are you seeing dermatologists only or also a hematologist?
【在 w******i 的大作中提到】
: 我第一次测没有查到。今年查到了。就到IIB了。
: 刚拿到绿卡。
|
u*******r
发帖数: 2855 | 5 my most sincere wish to you
了?
【在 w******i 的大作中提到】
: 我第一次测没有查到。今年查到了。就到IIB了。
: 刚拿到绿卡。
|
w******i
发帖数: 1899 | 6 1)large patches of plaques and papules >60%
2)one nodules
3)no any abnormal cells in blood
4) 口服维"A"酸,150mg/day
5)cobetsol
Do you know Stanford Doctor KIM for CTCL. ?
She checked and ask local doctor do something.
【在 l*h 的大作中提到】
: what do you have now, large patches of plaques and papules? enlarged lymph
: nodes? do you have nodules? any abnormal cells in blood?
: what treatment do you have now? phototherapy? topical steroids? topical
: chemo drugs?
: are you seeing dermatologists only or also a hematologist?
|
l*h
发帖数: 4124 | 7 youn kim? know her by name only.
ask her:
1. whether you should also see a hematologist for monitoring.
2. whether you should have whole body UVA phototherapy. it is recommend for
almost all patients unless they have abnormal response to UVA. if her
department does not have UVA cabinets, ask her where you can go to. after
you respond to phototherapy, you may be able to stop systemic drugs.
do you have lesions on your face and genital area? the whole body UVA
shouldn't be used on face and genital areas so you still need to continue
topical clobetasol on those areas if there are lesions. lesions on those
areas will also respond to phototherapy applied on other areas, there is
just a lag.
【在 w******i 的大作中提到】
: 1)large patches of plaques and papules >60%
: 2)one nodules
: 3)no any abnormal cells in blood
: 4) 口服维"A"酸,150mg/day
: 5)cobetsol
: Do you know Stanford Doctor KIM for CTCL. ?
: She checked and ask local doctor do something.
|
w******i
发帖数: 1899 | 8 thanks your answer.
yes,Youn Kim. She said I will check blood every two week.
I will get light therapy soon. However ,I just concern about the tumor at
back of my ear. I want to local therapy for it.
No body say how to do it. |
l*h
发帖数: 4124 | 9 probably no local therapy (except for topical creams) is needed for an
isolated nodule about 1cm in diameter. when you respond to phototherapy and
systemic therapies, it will usually go away.
【在 w******i 的大作中提到】
: thanks your answer.
: yes,Youn Kim. She said I will check blood every two week.
: I will get light therapy soon. However ,I just concern about the tumor at
: back of my ear. I want to local therapy for it.
: No body say how to do it.
|
w******i
发帖数: 1899 | 10 谢谢!不知道多久才有反应?
我的体重是200磅.在药量上是否应该加一些那? |
|
|
t***z
发帖数: 5112 | |
l*h
发帖数: 4124 | 12 if your disease responds to the treatment, you should see improvements in
about 4-6 weeks. some earlier, some later, but 4-6 weeks is the peak of
percentage of patients start to feel the improvement.
【在 w******i 的大作中提到】
: 谢谢!不知道多久才有反应?
: 我的体重是200磅.在药量上是否应该加一些那?
|
w******i
发帖数: 1899 | 13 I feel improvement after one week, however The nodule about 2-3cm no any
improvement. My local doctor said I can get radio treatment. How do you
think? |
l*h
发帖数: 4124 | 14 i would wait for the skin to significantly improve before starting radiation
therapy. the reason is that phototherapy's effect is on the whole body, not
just on the skin, and you are also taking retinoic acid.
you may want to ask your doctor whether there is something the compels him/
her to do early radiation therapy. it could be just because you pushed him/
her too hard on seeing improvement on the nodule.
【在 w******i 的大作中提到】
: I feel improvement after one week, however The nodule about 2-3cm no any
: improvement. My local doctor said I can get radio treatment. How do you
: think?
|
w******i
发帖数: 1899 | 15 What you said is very helpful! May I ask you the nodule will go away after
skin improve a lot?
I just take retinoic acid and increase to 300mg/day. No any other therapy
.
The nodule size 3cm*1.8cm. I stop put topical clobetasol on it. Because it
seems doesn't work and feel uncomfortable. I am very worry about that. What
do you think?
Thank you very much! |
l*h
发帖数: 4124 | 16 a few comments. i encourage you to discuss these with your doctor. don't
change treatment by yourself.
1. stage iiB disease has a good prognosis if actively managed. so don't
worry too much.
2. UVA phototherapy is recommended unless it is not available.
3. bexarotene is a newer drug recommended over first generation retinoids.
if you are taking first generation retinoids, you may ask your doctor to
consider switching you to the newer drug. one common adverse effect of
retinoids is hyperlipidemia, so check on blood lipids every a few months (if
abnormal, treat it).
4. since your nodule is not very small, oral retinoid itself may not be able
to completely eliminate it. it may require focused high energy X-ray
radiation therapy, but there is no consensus on whether it is better done
early or after a round of systemic therapy and skin-directed therapy.
5. if bexarotene and UVA don't fully resolve your skin lesions, low energy X
-ray radiation therapy should be considered.
therapy
What
【在 w******i 的大作中提到】
: What you said is very helpful! May I ask you the nodule will go away after
: skin improve a lot?
: I just take retinoic acid and increase to 300mg/day. No any other therapy
: .
: The nodule size 3cm*1.8cm. I stop put topical clobetasol on it. Because it
: seems doesn't work and feel uncomfortable. I am very worry about that. What
: do you think?
: Thank you very much!
|
w*****4
发帖数: 3902 | |
a******9
发帖数: 2979 | |
h******o
发帖数: 979 | |
