My 21 yr. old daughter was diagnosed with HL. She just had a pet scan, blood work, Neck biopsy, bone marrow biopsy, echocardiogram. Pulmonary function will be done on Wednesday. The biopsy's will let us know what stage etc.We meet withthe oncologist on Tuesday. He did say she shoud have a port and he indicated to me that it would be 12 chemo treatments followed by radiation. He said she would loose her hair.
My husband and I are very strong and we will see our daughter thru this BUT she is special needs. She does not understand what is in store for her. When we told her about the neck biopsy, she paniced for days so now we feel the less she knows (up front) the better.
My question is when does the hair fall out. I took my daughter wig sng and we made very light of it. But I keep hearing "you should shave her head before the first chemo". I think that is going to upset her even more. She has long, beautiful- never been bleached - hair. I had tried to look into donating it but it may not be long enough. DOES ANYONE HAVE A SUGGESTION ON HOW TO HANDLE THE HAIR ISSUE? Should we cut it short and ater her 1st chemo shave her head. I have been told that she should not have long hair when she starts to loose it becaue it is very tramic .
2ND Question-----How will she feel with the chemo treatments. Are you exhausted for the first few days following treatment and then bounce back a litle?
I know some are nauseau and some not.
This site is wonderful because I can get a response from
people that have actually gone thru this. I am numb and
heartbroken, please tell me what is in store for us
Mary Anne
Mary Anne-
Welcome to supportgroups, so sorry to read about your daughter and your family. I think your situation may be a 'first' for this relatively young site, but that doesn't mean we can't help you. Can you first clarify what you mean by special needs?
Also, what chemo regimen is she having?
As for when it starts-- if it starts-- it can be within a few days into a few weeks, and may include not just head hair but eyebrows, pubic hair-- all hair. Or not.
The fact that she has long hair-- the weight of the hair will make it come out more quickly, so at the very least I would consider that a worrisome issue.
But let's get back to those questions: Just so we're on the same page, special needs for her means what, and what chemo regimen will she have?
Ross
Thanks Ross for responding. I am not sure what stage she is in but I do know at least stage 2 since she has several masses. My daughter, Kaitlin, was born with fluid on the brain (no shunt needed). She has been thru years of physical, speech & occupational therapies to bring her to the wonderful person she is today. She has experienced no health issues, very little physical issues. She is border line life skills - learning support.
IQ around 49 but social skills tested much higher (low normal). She attends school, works and is very productive.
She does not know right now how sick she is except that she is itching alot and has a lump in her neck. I have been told the mass in her chest it quite large and the good news is the pet scan showed nothing below the diaphram.
Mary Anne,
I began to lose my hair after the second chemo treatment. It was not fun to lose great strands of it, and became annoying as it came out constantly on my shoulders and very upsetting when it was washed and collected at the bottom of the shower.
The idea is to do this slowly. My suggestion would be to bob her hair just under her ears. That way the fact that it will thin is disguised.
Then cut shorter, the salons call it an elfin cut. It's great because if hair still comes out it is only short strands and not as noticeable on clothing and such and also it's low maintenance during treatment. Begin to use baby shampoo now, it's not recommended to use normal shampoos and conditioners because of the chemicals. It's also gentler on the hair and said to help it's strength.
In the end I shaved my head because of choice. It was going to be easier, but still not any less upsetting.
I'm sorry to hear your darling daughter must go through this.
Much love Annie
Mary Anne-
Annie as always offers sound advice, I would pay close attention to her advice here.
As for how your daughter will feel following chemo, that's going to vary quite a bit depending on what chemo she receives, and how her individual body responds. I think you'll see from other responses here and elsewhere on the site that by and large, following chemo people experience a bit of a cycle. For example one guy on here felt his worst a week after his chemo infusions, and that lasted for a few days before he began to feel better.
You might want to keep in mind some of the basics of chemotherapy drugs, and why they cause the side effects they do: they kill fast dividing cells, which includes hair follicles, the mucous membrane in the mouth, and the entire digestive system. Consequently people lose their hair, they develop mouth sores, and they have trouble eating, experience taste changes, and are often nauseated. So a good pro-active plan would be to try and head off some of those things-- for instance, staying very hydrated and maintaining good oral hygiene can prevent mouth sores, which can otherwise make eating even less attractive.
Ross
Just returned from the Doctors. My daughter has
stage 2A X Hodgkins. The treatment will be every 2 weeks (ABVD). The mass in her chest is quite large which is why the X factor. At least 8 treatments possibly 12, followed by radiation. On June 10 they are putting in a port then starting the chemo the same day.
Of course we have been told of all the side effects and also how they vary from patient to patient. My first concern is the hair. Some say she may not loose it but I did notice that Annie had the same treatment and she lost her hair. I guess I should plan for the worse and hope for the best.
Many thanks for your responses; they have been so helpful.
Mary Anne-
I hope that having learned more about your daughter's diagnosis and the side effects that you are feeling a little better about the situation. For many people, knowledge isn't just power, it also has an anti-anxiety effect.
Please let us know how your daughter is doing when you can, and how your family is doing as well.
Ross
Thought I would update my status and THANK everyone for their support. My daughter just finished her 10th out of 12 Chemo's and is going thru it with flying colors. She has had little side effects. The nausea has been minimal and be have handled that with Meds. She did loose her hair but it took almost 4 months before I shaved it all off. Best move we made and we did it at the right time.
My daugher is special needs and I think that made a big difference in the way she approached everything. She goes for her treatments with a big smile on her face, talking to everyone. She has been deemed the favorite patient at the hospital. She continues to work and NEVER complains about anything. Never thought we would get thru this so easily.
Mastern,
Thanks for sharing your update. I am new here since your original posts and it is very uplifting to hear how well your daughter has done. I hope and pray I can keep as positive an attitude as she has when I start my treatments. I wish you and your daughter the best as you guys continue the journey.
It's good to hear of your daughter's great attitude towards the ordeal, she sounds like a sweetheart. I have a 21 year old special needs daughter myself, and I wouldn't change a thing about her if I could. Hoping for some good post-treatment news.
Ryan, here's hoping for a successful treatment plan to you as well. You've got a good fighting spirit. Stay positive
and kick that cancer's butt.
-Andy