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our oncologist appt :( - Page 2

post #21 of 338
typing one handed
momofmine has a point w/ AF, when I was anorexic I lost my periods for about a year and a half, it could very well be from weight loss.

Sorry I don't have a lot of good advice but I've been thinking about you and sending you lots of healing vibes and hugs
post #22 of 338
I hope you get some answers soon.
Not sure about the supplements but would it be ok to stop them for a week or two and see if your eosinophils go down? Then have the tests, and if you don't have lymphoma, you can go back to your schedule of supplements.
If it is lymphoma, you want to know, and it's best to treat it asap. I think this is the important thing.

I had night sweats while I was nursing.
I also have non hodgkin's lymphoma, and I get hot flashes and night sweats from it. I'm also in menopause from the chemo. These sweats are much more severe and drenching than my postpartum nursing night sweats.

And definately get a second opinion, preferably in a large cancer center in the nearest city, with a lymphoma expert, if it turns out you need an oncologist. If you need help with this, feel free to PM me.
I'm hoping that you don't!
post #23 of 338
I'm so sorry you are going through this. What a scary time! My thoughts are with you. Please keep us updated!



Tracy
post #24 of 338
Thread Starter 
thank you both for sharing your experiences because any info i can get helps a ton. i wont ignore anything going on with me, but just so that we are not misinterpreting symptoms, kwim?
can i just tell you that my amazing friend who delivered her fullterm baby stillborn 3 weeks ago just offered me to try and pump her breasts for the first time to donate milk to ella so that i can have the ct scan. can you imagine how selfless and genuine a gesture that is?! i was blown away.
post #25 of 338
Wow, I can't believe this is here. I'm being ultra selfish right now, but I'm dealing with this as well. I had a blood test come back with ultra high EOS and now we are finding out what it is. It was too high (I am told) to be allergies, eczema (which I don't have) asthma (again, don't have it.) I'm really feeling unsettled.

Hugs to you, mama. Thanks for posting. I feel less alone.
post #26 of 338
Quote:
Originally Posted by ellasmama2007 View Post
can i just tell you that my amazing friend who delivered her fullterm baby stillborn 3 weeks ago just offered me to try and pump her breasts for the first time to donate milk to ella so that i can have the ct scan. can you imagine how selfless and genuine a gesture that is?! i was blown away.
Wow! What an amazing friend you have. I am glad. :
Quote:
Originally Posted by ~Twighlight~ View Post
Wow, I can't believe this is here. I'm being ultra selfish right now, but I'm dealing with this as well. I had a blood test come back with ultra high EOS and now we are finding out what it is. It was too high (I am told) to be allergies, eczema (which I don't have) asthma (again, don't have it.) I'm really feeling unsettled.

Hugs to you, mama. Thanks for posting. I feel less alone.
Twilight
Please keep us posted on how you are doing also.
post #27 of 338
Quote:
Originally Posted by ellasmama2007 View Post
can i just tell you that my amazing friend who delivered her fullterm baby stillborn 3 weeks ago just offered me to try and pump her breasts for the first time to donate milk to ella so that i can have the ct scan. can you imagine how selfless and genuine a gesture that is?! i was blown away.
What a beautiful thing for her to do with her healing body and spirit...
We're all holding you up to the sun mama...
One day at a time...
post #28 of 338
Quote:
Originally Posted by ellasmama2007 View Post
thank you both for sharing your experiences because any info i can get helps a ton. i wont ignore anything going on with me, but just so that we are not misinterpreting symptoms, kwim?
can i just tell you that my amazing friend who delivered her fullterm baby stillborn 3 weeks ago just offered me to try and pump her breasts for the first time to donate milk to ella so that i can have the ct scan. can you imagine how selfless and genuine a gesture that is?! i was blown away.
Wow- that is amazing. What an incredible person. It's good that you have such amazing friends around you!!
post #29 of 338
post #30 of 338
Quote:
Originally Posted by ellasmama2007 View Post
can i just tell you that my amazing friend who delivered her fullterm baby stillborn 3 weeks ago just offered me to try and pump her breasts for the first time to donate milk to ella so that i can have the ct scan. can you imagine how selfless and genuine a gesture that is?! i was blown away.
What an amazingly selfless woman. for her lo.
For what little it's worth, my AF started and stopped during bfing the past 17 months because of bfing and thyroid/adrenal problems.
You are in my thoughts. :
post #31 of 338
What a beautiful friend you have. I'm so happy that you're surrounded irl by such wonderful people.

Twighlight, I'm thinking of you, too.

s mamas
post #32 of 338
Thread Starter 
Quote:
Originally Posted by OakBerry View Post
I hope you get some answers soon.
Not sure about the supplements but would it be ok to stop them for a week or two and see if your eosinophils go down? Then have the tests, and if you don't have lymphoma, you can go back to your schedule of supplements.
If it is lymphoma, you want to know, and it's best to treat it asap. I think this is the important thing.

I had night sweats while I was nursing.
I also have non hodgkin's lymphoma, and I get hot flashes and night sweats from it. I'm also in menopause from the chemo. These sweats are much more severe and drenching than my postprtum nursing night sweats.

And definately get a second opinion, preferably in a large cancer center in the nearest city, with a lymphoma expert, if it turns out you need an oncologist. If you need help with this, feel free to PM me.
I'm hoping that you don't!
im sorry, i missed your post before i replied earlier. i am so sorry you are going through this, ,mama . i really appreciate your experience and advice on this! i know i need a new doc if this goes any further. i was just waiting/praying that the test results would indicate something easily treatable. i am avoiding most of the supps. i am still taking my multi, ca/mag/d, c, probiotics and enzymes. i feel that they are all free of anything wonky and really important right now.
i dont have drenching sweats, just kinda more-than-just-damp-shirts sweats. i dont get the sheets wet or anything.

Quote:
Originally Posted by ~Twighlight~ View Post
Wow, I can't believe this is here. I'm being ultra selfish right now, but I'm dealing with this as well. I had a blood test come back with ultra high EOS and now we are finding out what it is. It was too high (I am told) to be allergies, eczema (which I don't have) asthma (again, don't have it.) I'm really feeling unsettled.

Hugs to you, mama. Thanks for posting. I feel less alone.
wow, is right. it is nice to feel less alone! hugs to you too, i wish you the best as well! do you mind sharing how high your eos are? i dint get a percent, they just told me 5220 with normal being 40-440.

i really feel so much better with all of you mamas sending me your good vibes. i cant thank you enough
post #33 of 338

I'm assuming they checked your thyroid and it was normal? (can affect periods & night sweats)
post #34 of 338
Thread Starter 
yep, so far they've checked my thyroid twice and it was normal. they also sent for things like epstein barr, lymes and something else which were normal.
post #35 of 338
Thread Starter 
Quote:
Originally Posted by ~Twighlight~ View Post
Wow, I can't believe this is here. I'm being ultra selfish right now, but I'm dealing with this as well. I had a blood test come back with ultra high EOS and now we are finding out what it is. It was too high (I am told) to be allergies, eczema (which I don't have) asthma (again, don't have it.) I'm really feeling unsettled.

Hugs to you, mama. Thanks for posting. I feel less alone.
i was just curious, are you also nursing a dc with allergies? please keep us posted if you find out anything.

sorry to vent here, im just feeling a little freaked. i know i should probably not be on the allergy forum, but i only know you girls and whatever i have is possibly responsible for all of dds allergies.
i am going back to the onc on wed afternoon to find out the results, i just got off th ephone with them to move up my appt from the 19th cause i think ill be looney by then. ive been reading and my level of eosinophilia (greater than 5000) is considered the most severe and can lead to multiple organ/system damage within 6 mos. it affects mainly the heart, lungs, liver and kidneys. a lot of people die from this. i wasnt even thinking about the eos doing damage...i was just thinking like "oh god, i have cancer." my maternal grandmother died of lymphoma. she was 45, im 28.
i just cant believe this is happening.
post #36 of 338
Vent away- we're here for you.

That's good that you moved your appointment up. Try not to stress too much before then (I know, easier said than done!).

Oops- DD's waking up... type more later...
post #37 of 338
Thread Starter 
i just keep thinking about ella, you know? it seems like our best case scenario right now is that i have to wean her:cry and start meds to get my blood count down as much as we can. i have a case of elecare sitting here that the ped gave us as well as some samples of eo28 splash. she didnt tolerate the neocate so i cant even imagine that she wont react to these. i cant even imagine actually weaning her - i always intended to let her wean herself. she wont take bottles, but she likes her sippy with water (she spits it everywhere).
plus im so worried about her because she probably has high eos too if she has been reacting all this time to everything. will this damage her organs? will she need more meds? shes already on gastrocrom for the allergies and diflucan for yeast.
i just really appreciate talking honestly to you girls. i am trying to pretend like everything is fine for dh and my mom, but i dont feel like everything is fine.
post #38 of 338
Quote:
Originally Posted by ellasmama2007 View Post
thank you both for sharing your experiences because any info i can get helps a ton. i wont ignore anything going on with me, but just so that we are not misinterpreting symptoms, kwim?
can i just tell you that my amazing friend who delivered her fullterm baby stillborn 3 weeks ago just offered me to try and pump her breasts for the first time to donate milk to ella so that i can have the ct scan. can you imagine how selfless and genuine a gesture that is?! i was blown away.
This has me crying in my office. To have such a strong, self-less and supporting friend is a wonderful thing indeed.

I'm thinking of you at this hard time, and sending hugs your way.
post #39 of 338
post #40 of 338
I'm sure your heart is breaking. I just want you to know that whatever you need to do is okay. It's more than okay. You have to be a healthy mama. That's was Ella needs most.

Can you get yours and Ella's doctors together to discuss the issues on all sides?
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