lymphedema suggestions

cindygodfrey2

HEllo all, it's been a while for me to post.  My 30 year old daughter with stage 3b cervical cancer decided to take a break from the latest chemotherapy because she ended up in the hospital for at least a week with each dose.  She had a lymph node that had grown slightly.  During the break she started eating a vegan diet and using other alternative treatments such as Cannabidiol oil.  In the almost 8 weeks she was off of chemo her tumor growning from a lymph node tripled in size and now she has sever lymphedema in her left leg.  She can not lay down (slips sitting up in a hospital bed) because of severe pain.  Do any of you have any experience with lymphedema.  Most is in her thigh.  When she is up for long it swells in her foot as well but after having her feet up the edema resolves there.  Thank you

ccfighter

Hi Cindy,
 
its so so good to

Hi Cindy,

 

its so so good to hear from you.  I am sorry to hear about your daughters struggles.  It sounds very uncomfortable.  Please make sure her doctors are aware and giving her appropriate pain relief.  Can they not cyber knife the lymph node?

i wish I could be more helpful about the lymph edema and pain.  There are therapists trained to help massage and therefore help move the lymph through the system.  Compression garments are also suggested.  It seems like the lymph is being blocked by the tumor in the lymph node, so what would be most effective would be removing the lymph node or reducing the size of the tumor.  What chemo has she been on?  Has she entertained the idea of clinical trials?

hang in there.  Hugs to you both.

cindygodfrey2

ccfighter said:

Hi Cindy,
 
its so so good to

Hi Cindy,

 

its so so good to hear from you.  I am sorry to hear about your daughters struggles.  It sounds very uncomfortable.  Please make sure her doctors are aware and giving her appropriate pain relief.  Can they not cyber knife the lymph node?

i wish I could be more helpful about the lymph edema and pain.  There are therapists trained to help massage and therefore help move the lymph through the system.  Compression garments are also suggested.  It seems like the lymph is being blocked by the tumor in the lymph node, so what would be most effective would be removing the lymph node or reducing the size of the tumor.  What chemo has she been on?  Has she entertained the idea of clinical trials?

hang in there.  Hugs to you both.

Hi CC! What's going on in

Hi CC! What's going on in your neck of the woods?  She didn't qualify for some of the clinical trials recently because she is obese.  HEr doc and we are watching for some.  She and our family were comfortable with her making quality time with her boys and just ride out the tumor growth then low and behold lymphedema blew up her leg over a week.  Now she can barely walk with a walker because of the size.  She is on Hospice and we are requesting some lymphedema massage and wraps ....waiting on them to see if they can/will get that for her.  No one talked about any type of surgery ever.  What are your thoughts on what cyberknife the lymph node would do?  Tell me again why they wouldn't go in and remove the tumor and the lymph node/s?  I am so tired......I can imagine how my daughter feels......

so chemo not working for her (can't remember the latest cocktail)

can't get enough radiation in that area to have an impact on the tumor so

going with HOspice for palliative care. 

I hate cancer!

babe12

cindygodfrey2 said:

Hi CC! What's going on in

Hi CC! What's going on in your neck of the woods?  She didn't qualify for some of the clinical trials recently because she is obese.  HEr doc and we are watching for some.  She and our family were comfortable with her making quality time with her boys and just ride out the tumor growth then low and behold lymphedema blew up her leg over a week.  Now she can barely walk with a walker because of the size.  She is on Hospice and we are requesting some lymphedema massage and wraps ....waiting on them to see if they can/will get that for her.  No one talked about any type of surgery ever.  What are your thoughts on what cyberknife the lymph node would do?  Tell me again why they wouldn't go in and remove the tumor and the lymph node/s?  I am so tired......I can imagine how my daughter feels......

so chemo not working for her (can't remember the latest cocktail)

can't get enough radiation in that area to have an impact on the tumor so

going with HOspice for palliative care. 

I hate cancer!

Hey Cindy

Hey Cindy, I'm so sorry to hear about your daughter. I'm with you, I hate cancer!!! It took my mom, sister in law and some good friends. 

CC always has good info, I don't think it hurts to ask about other treatments. Your daughter is so young, I can't imagine what you &  your family are going through. Please know you are all in my thoughts and prayers.

Keep us updated if you can, I know you are exhausted.

God bless,

Babe aka Dana

cindygodfrey2

babe12 said:

Hey Cindy

Hey Cindy, I'm so sorry to hear about your daughter. I'm with you, I hate cancer!!! It took my mom, sister in law and some good friends. 

CC always has good info, I don't think it hurts to ask about other treatments. Your daughter is so young, I can't imagine what you &  your family are going through. Please know you are all in my thoughts and prayers.

Keep us updated if you can, I know you are exhausted.

God bless,

Babe aka Dana

Thank you Dana.....I hope to

Thank you Dana.....I hope to be on this site more for support.  Have a wonderful holiday weekend.

ccfighter

cindygodfrey2 said:

Hi CC! What's going on in

Hi CC! What's going on in your neck of the woods?  She didn't qualify for some of the clinical trials recently because she is obese.  HEr doc and we are watching for some.  She and our family were comfortable with her making quality time with her boys and just ride out the tumor growth then low and behold lymphedema blew up her leg over a week.  Now she can barely walk with a walker because of the size.  She is on Hospice and we are requesting some lymphedema massage and wraps ....waiting on them to see if they can/will get that for her.  No one talked about any type of surgery ever.  What are your thoughts on what cyberknife the lymph node would do?  Tell me again why they wouldn't go in and remove the tumor and the lymph node/s?  I am so tired......I can imagine how my daughter feels......

so chemo not working for her (can't remember the latest cocktail)

can't get enough radiation in that area to have an impact on the tumor so

going with HOspice for palliative care. 

I hate cancer!

Hi Cindy,
i am doing well,

Hi Cindy,

i am doing well, thanks for asking.  Getting ready for our big 4 th of July party we have every year.  Lots of food, friends and fireworks.  

Cyberknife can be used to radiate tumors that are in tricky locations or in areas that have already had radiation because it is very specific and spares nearby tissue.  In your daughters case it may be an option, but I think that the tumor needs to be on the smaller side for it to be effective.  Certainly worth asking about since it can be used for palliation as well.

i didn't realize that obesity would be a disqualifying condition for clinical trials.  That's a bummer.  I still like the advaxis trial but I have heard they recently changed their qualifying criteria.  I am not sure what it is.  

I hope that your daughter is comfortable and is able to enjoy her boys during this time.  I know this is hard on everybody.  I wish I could change the way this world works, find a cure for these awful diseases.  May peace and love surround you all.

hugs.

cindygodfrey2

ccfighter said:

Hi Cindy,
i am doing well,

Hi Cindy,

i am doing well, thanks for asking.  Getting ready for our big 4 th of July party we have every year.  Lots of food, friends and fireworks.  

Cyberknife can be used to radiate tumors that are in tricky locations or in areas that have already had radiation because it is very specific and spares nearby tissue.  In your daughters case it may be an option, but I think that the tumor needs to be on the smaller side for it to be effective.  Certainly worth asking about since it can be used for palliation as well.

i didn't realize that obesity would be a disqualifying condition for clinical trials.  That's a bummer.  I still like the advaxis trial but I have heard they recently changed their qualifying criteria.  I am not sure what it is.  

I hope that your daughter is comfortable and is able to enjoy her boys during this time.  I know this is hard on everybody.  I wish I could change the way this world works, find a cure for these awful diseases.  May peace and love surround you all.

hugs.

thank you so very much CC. 

thank you so very much CC.  The very best to you!

dezzie

cindygodfrey2 said:

Hi CC! What's going on in

Hi CC! What's going on in your neck of the woods?  She didn't qualify for some of the clinical trials recently because she is obese.  HEr doc and we are watching for some.  She and our family were comfortable with her making quality time with her boys and just ride out the tumor growth then low and behold lymphedema blew up her leg over a week.  Now she can barely walk with a walker because of the size.  She is on Hospice and we are requesting some lymphedema massage and wraps ....waiting on them to see if they can/will get that for her.  No one talked about any type of surgery ever.  What are your thoughts on what cyberknife the lymph node would do?  Tell me again why they wouldn't go in and remove the tumor and the lymph node/s?  I am so tired......I can imagine how my daughter feels......

so chemo not working for her (can't remember the latest cocktail)

can't get enough radiation in that area to have an impact on the tumor so

going with HOspice for palliative care. 

I hate cancer!

Hi Cindy,
 
I am sorry to

Hi Cindy,

 

I am sorry to hear about your daughter's condition. My wife has lympedema from taking our some lymph nodes as well from staging. Right now, she manages it by wearing compression stockings and getting MLD and wraps (when the condition is bad) but for the most part her condition is quite good. Lymphedema is something that most doctors don't even talk about and in some cases, seem to be worse than having cancer.

I am not sure why they wouldn't remove the tumour and lymph nodes but it may be in a difficult place where lymphadenectomy is not that easy. We are also in the situation where we don't know if radiotherapy or chemo would be enough to remove the tumour in one of her lymph nodes and we worry that lymphadenectomy or radiotherapy may impair the lymphatic system even more...

I know it is hard,  but hang in there... talk to your doctor about the quality of life with lymphedema and it can be a good starting point for you and your daughter to make a decision.

cindygodfrey2

dezzie said:

Hi Cindy,
 
I am sorry to

Hi Cindy,

 

I am sorry to hear about your daughter's condition. My wife has lympedema from taking our some lymph nodes as well from staging. Right now, she manages it by wearing compression stockings and getting MLD and wraps (when the condition is bad) but for the most part her condition is quite good. Lymphedema is something that most doctors don't even talk about and in some cases, seem to be worse than having cancer.

I am not sure why they wouldn't remove the tumour and lymph nodes but it may be in a difficult place where lymphadenectomy is not that easy. We are also in the situation where we don't know if radiotherapy or chemo would be enough to remove the tumour in one of her lymph nodes and we worry that lymphadenectomy or radiotherapy may impair the lymphatic system even more...

I know it is hard,  but hang in there... talk to your doctor about the quality of life with lymphedema and it can be a good starting point for you and your daughter to make a decision.

Thanks Dezzie...I think the

Thanks Dezzie...I think the biggest problem is that she is on Hospice.  She doesn't see her gyn onc anymore because he says there is no reason to.  The Hospice doc, well, some hospices don't want to spend any money they don't have to so the care is different...not bad, just different than active care....

On a good note we had a big birthday party for my daughter this weekend.  almost 50 guests came and went throughout the day.  She went to her room to rest on numerous occasions but it was nice for her to see all her old friends and most of her family from out of town.  It was very emotional for us all.

 

 

ccfighter

cindygodfrey2 said:

Thanks Dezzie...I think the

Thanks Dezzie...I think the biggest problem is that she is on Hospice.  She doesn't see her gyn onc anymore because he says there is no reason to.  The Hospice doc, well, some hospices don't want to spend any money they don't have to so the care is different...not bad, just different than active care....

On a good note we had a big birthday party for my daughter this weekend.  almost 50 guests came and went throughout the day.  She went to her room to rest on numerous occasions but it was nice for her to see all her old friends and most of her family from out of town.  It was very emotional for us all.

 

 

Cindy,
 
im so glad your

Cindy,

 

im so glad your daughter had a wonderful birthday celebration!  It sounds like she is loved by so many.  That is wonderful.  I hope she is comfortable and her leg is feeling better.  Please send her my warn birthday wishes as well.  Hugs to you all.

cindygodfrey2

ccfighter said:

Cindy,
 
im so glad your

Cindy,

 

im so glad your daughter had a wonderful birthday celebration!  It sounds like she is loved by so many.  That is wonderful.  I hope she is comfortable and her leg is feeling better.  Please send her my warn birthday wishes as well.  Hugs to you all.

Thanks again cc and everyone

Thanks again cc and everyone on this board.  My daughter hasn't eaten in 6 days.  She has an infection in that leg with lymphedema and a horrid wound.  I am praying she bounces back a little when / if infection resolves with antibiotics.  It would be nice to have a few more coherent words with her.  Prayers for us all!

ccfighter

cindygodfrey2 said:

Thanks again cc and everyone

Thanks again cc and everyone on this board.  My daughter hasn't eaten in 6 days.  She has an infection in that leg with lymphedema and a horrid wound.  I am praying she bounces back a little when / if infection resolves with antibiotics.  It would be nice to have a few more coherent words with her.  Prayers for us all!

Yes Cindy.  Many prayers for

Yes Cindy.  Many prayers for us all but today especially for your lovely daughter.  May peace and love surround you all.  I hope the infection resolves and you can have more time together.  Hugs to you both.