our oncologist appt :( - Mothering Forums

Forum Jump: 
Reply
 
Thread Tools
#1 of 338 Old 11-06-2008, 10:34 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
i dont want to burden you with tmi, but i went to my ob/gyn down here a couple weeks ago because i stopped getting my period (since aug 4). i am also having night sweats. he odered cbcs which showed eosinophils elevated thru the roof twice ( my value is 5220, please share if any of you have also had high values in the past). he sent me to an oncologist who specializes in hematology yesterday and he has serious concerns about hodgkins lymphoma. there are no lumps that we can feel anywhere, but he wants me to go for a ct of chest/abd/pelvis asap. the problem is ella is allergic to shellfish and if i get the contrast dye and bf, that is a big prob. so we're holding off until after the initial bloodwork comes back.
he thinks this might be a poss explanation as to why all of ella and my allergy probs just showed up after she was born. he thinks i developed hypereosinophilic syndrome poss from cancer and am passing the ige to ella via bm.
im sure you all can commiserate with me about what it feels like to have to hand your health over to a doctor who is treating you like a science experiment. im not thrilled to say the least. also, he wants me to STOP ALL SUPPLEMENTS!!!! i made him out a complete list of all the supps i take for gut healing, etc and he didnt even glance at it. he said vits can be full of fillers and allergens (not listening to me telling him how meticulously i screen my supps for crap and allergens) and that i have to stop them. i know your gonna tell me to be in charge of my own health and everything, but i dont know sh!t about cancer and i feel kinda backed into a corner with this guy.
to make matters more complicated, i have to start fluconazole tomorrow for our yeast overgrowth and i am definitely still going to take milk thistle and vit c for liver support ( in addition to my multi, dig enzymes and probiotics which i am not stopping no matter what he says). here i was worrying about fluconazole being unhealthy...little did i know what else was brewing.
ellasmama2007 is offline  
Sponsored Links
Advertisement
 
#2 of 338 Old 11-06-2008, 10:38 PM
 
chlobo's Avatar
 
Join Date: Jan 2004
Posts: 4,737
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Oh Mama,

How scary for you. I'm so sorry you are going through this. Sending prayers and positive thoughts your way.

hugs.

Mom to DMI & Silly Apple
chlobo is offline  
#3 of 338 Old 11-06-2008, 10:58 PM
 
mtn.mama's Avatar
 
Join Date: Mar 2007
Location: Off the grid, AK
Posts: 3,110
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Wow, that's alot to think about. At least its a rabbit trail to chase if nothing else. I think I would talk to the doctor about WHY he wants you to stop supplementing. Maybe there's some good reason like it throws test results off. If its honestly only about fillers, and you are certain that your supplements are safe, then I would tell him no dice. That you are taking personal responsibility for their quality and efficacy. I know this sounds ridiculous, but try not to worry and stress about results that aren't in hand yet. Wait and see what the bloodwork says... and take it from there. And please, please, keep us posted. We're here to listen, brainstorm, commiserate, anything...

chicken3.gif   We're remote ECing, unschooling, free ranging goat dairy farmers.  

mtn.mama is offline  
#4 of 338 Old 11-06-2008, 11:22 PM
 
changingseasons's Avatar
 
Join Date: Mar 2008
Location: Seattle
Posts: 8,756
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
What a day. I hope you're doing well, and remember we're all here to support you.

Quote:
Originally Posted by ellasmama2007 View Post
he odered cbcs which showed eosinophils elevated thru the roof twice ( my value is 5220, please share if any of you have also had high values in the past).
My eos level was high when it was checked a few months back, but it was given in a percentage- I think mine was 25%, and normal is 0-4%. DD's was 17%. I just did some Googling, and it looks like if it's expressed in a whole number like that you can take the eos number and divide it by the WBC to get the percentage. I'm curious how our numbers compare.

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
changingseasons is offline  
#5 of 338 Old 11-06-2008, 11:42 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
thank you girls . he definitely wanted me to stop supps because of the fillers and risk of allergens, not test results. he didnt even look at them. meanwhile, it's not like he sat there and talked about other preventitive measures i could take to avoid carcinogens or eat/live/exercise well. then, he had the nads to talk about how some people have a disorder where they take too many vits and it can be toxic to their bodies. i was trying to explain to him that i calculated all my intakes and that none of my vits overlap in the different supps and that each one has a specific purpose for gut healing, antihistamine, etc - yeah, that went over like a ton of bricks. instead of talking to me about the evils of eating processed foods or using microwaves, he droned on about supplements.
cs, i was going to pm you and ask you about that because you had mentioned before that your eos was high but your practitioner attributed it to the allergies. i also wonder how ours would compare, but even my allergist said my # was too high to be allergies. the oncologist said to me, with a big smile on his face, "i was so surprised to see how high your eos were." i wanted to say "oh, im happy i made your day more interesting." sorry, he just was so aloof and i felt like i had been punched in the stomach and he wouldnt listen to me.
ellasmama2007 is offline  
#6 of 338 Old 11-07-2008, 12:36 AM
 
*mama moose*'s Avatar
 
Join Date: Oct 2006
Location: Antioch, CA
Posts: 1,641
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I am so sorry mama We're all here for you
And its so frustrating to be treated like you are jut there to make the Drs day more interesting....
(sorry femding off the 2yo from keyboard) more

mama to August May (8/06) Liberty Kiana (7/08) and Calliope Rose (6/15/10)
*mama moose* is offline  
#7 of 338 Old 11-07-2008, 12:51 AM
 
Chinese Pistache's Avatar
 
Join Date: May 2006
Location: Under a shady tree, you and me
Posts: 5,854
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm so sorry, mama. Can you find another doctor? I know oncologists aren't as numerous as peds, but I just wonder if you have another option.
Chinese Pistache is offline  
#8 of 338 Old 11-07-2008, 02:03 AM
 
kjbrown92's Avatar
 
Join Date: Dec 2007
Location: CT
Posts: 10,746
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
kjbrown92 is offline  
#9 of 338 Old 11-07-2008, 02:43 AM
 
nalo's Avatar
 
Join Date: Oct 2005
Location: Seattle-ish
Posts: 2,566
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Chinese Pistache View Post
I'm so sorry, mama. Can you find another doctor? I know oncologists aren't as numerous as peds, but I just wonder if you have another option.
My initial thought was wondering if there is any way for you to also find an alternative practitioner to help guide you through this. So, you could have a regular onc. you're dealing with but also an ND or other person who can answer the questions that come up like supps and whatnot. This doc is saying no to supps because he doesn't want to be bothered. Maybe you could find someone who you could always go to for additional info and support and help you with things this onc. knows nothing about. I'm so sorry you are dealing with this horribly stressful situation. I will hold a really good thought that all turns out well.

Still a sleepy mama to my fabulous 2 year old girl
nalo is offline  
#10 of 338 Old 11-07-2008, 10:26 AM
 
crunchy_mama's Avatar
 
Join Date: Oct 2004
Location: Missouri
Posts: 5,936
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I am so sorry you are dealing w/ this. I hope you find peace w/ however you decide to approach this.

Happily Married to my : 11 yrs- Mama to wild-eyed monkey boy 7-04, fiery little girl 4-07, and the happy smiley baby that sleeps 11-09!
crunchy_mama is offline  
#11 of 338 Old 11-07-2008, 10:35 AM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
thank you, girls. i was actually thinking of contacting my holistic ped to see if he can recommend someone good
ellasmama2007 is offline  
#12 of 338 Old 11-07-2008, 11:03 AM
 
momofmine's Avatar
 
Join Date: Jan 2007
Posts: 3,046
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hugs to you mama. This must be very stressful and overwhelming. I second finding someone now who is alternative-minded and can help you navigate the sea of conventional and alternative therapies.

Hugs and healing vibes coming your way.
momofmine is offline  
#13 of 338 Old 11-07-2008, 11:19 AM
 
menomena's Avatar
 
Join Date: Jun 2007
Location: here, for now
Posts: 2,364
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
mama. def. keep us posted! we're here to listen.

Nessa, DD1 (5) DD2 (3) & expecting again in late February/early March!
menomena is offline  
#14 of 338 Old 11-07-2008, 08:32 PM
 
mommydancer's Avatar
 
Join Date: Jan 2008
Posts: 593
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I agree with CP about finding a different Doc. Even if he's right and your elevated eos is Hodgkin's (I have a friend who had this and after treatment has been clear for like 15 years or so...she's still just fine) you will want a practitioner you trust and can relate to...this one sounds like a dud.

Momma to one small person I call Smoodgie :joy.gif
mommydancer is offline  
#15 of 338 Old 11-07-2008, 11:07 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
thank you, ladies. i agree, he is definitely dud potential. and thank you for telling me about your friend, mommydancer. i need all the positives i can get! i just lost a dear friend in august to breast cancer and both my grandparents died from cancer ( esophageal and yes, lymphoma)
ellasmama2007 is offline  
#16 of 338 Old 11-07-2008, 11:45 PM
 
MoonWillow's Avatar
 
Join Date: May 2006
Location: Pemberly
Posts: 3,857
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Oh my goodness
Yes please find a practitioner who you are comfortable with. And please keep us posted. I will be pulling for you.
MoonWillow is offline  
#17 of 338 Old 11-08-2008, 12:52 AM
 
Hokulele's Avatar
 
Join Date: Mar 2005
Posts: 1,119
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hokulele is offline  
#18 of 338 Old 11-08-2008, 01:46 AM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
thank you . does anyone else have night sweats from bf? that's one of my symptoms pointing to hodgkins, but i thought maybe it could be hormonal irregs from the bf. also, has anyone else had af start and then stop while bf? just wondering...
ellasmama2007 is offline  
#19 of 338 Old 11-08-2008, 01:55 AM
 
changingseasons's Avatar
 
Join Date: Mar 2008
Location: Seattle
Posts: 8,756
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by ellasmama2007 View Post
thank you . does anyone else have night sweats from bf? that's one of my symptoms pointing to hodgkins, but i thought maybe it could be hormonal irregs from the bf. also, has anyone else had af start and then stop while bf? just wondering...
My AF started exactly 6 weeks postpartum (it was definitely AF, not lochia), and then I had another period about 6 weeks after that. None since. I've had some really light spotting maybe 2 or 3 times this year, but not for more than a day.

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
changingseasons is offline  
#20 of 338 Old 11-08-2008, 01:59 AM
 
momofmine's Avatar
 
Join Date: Jan 2007
Posts: 3,046
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I have a good friend who had night sweats for a few years, and they have since stopped. Her midwife seemed pretty confident it was hormonal, related to possible peri-menopause, and they never did any tests or anything about it. SHe's not going through menopause now, she is mid-30's, but the night sweats just stopped. (Signs of menopause can begin years and years before.) I guess it could have been related to breastfeeding (is that what "bf" meant?), though I am pretty sure she had them even after her last child stopped nursing.

Also, aren't you limiting a lot of foods right now? Have you lost weight? That can totally make your periods stop. When I was nursing my first child, we did SCD when he was about 1, and did it for 3 years. My period returned when he was 26 months. But then we he was about three, I started more of an Atkins version of SCD, low carb, to lose weight. I didn't lose the weight super fast, but I lost about 25 pounds, and one month, my periods just completely stopped. And even when I gained some of the weight back, it still didn't return. I didn't have a period for almost a year. I don't know why, but this did not seem abnormal to me at the time! I never really pursued it. Later, I went through a bit of a stressful time, and my period came back. I got pregnant that month, so it was the only one I had! After that pregnancy with my 2nd child, the periods came back when he was about 18 or 20 months, and they are totally regular now (despite the fact that they have never been regular before).

Anyway, that's all to say that I am sure there are a lot of possibilities. Hugs to you...
momofmine is offline  
#21 of 338 Old 11-08-2008, 02:05 AM
 
*mama moose*'s Avatar
 
Join Date: Oct 2006
Location: Antioch, CA
Posts: 1,641
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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

mama to August May (8/06) Liberty Kiana (7/08) and Calliope Rose (6/15/10)
*mama moose* is offline  
#22 of 338 Old 11-08-2008, 02:23 AM
 
OakBerry's Avatar
 
Join Date: May 2005
Posts: 2,888
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!
OakBerry is offline  
#23 of 338 Old 11-08-2008, 02:41 AM
 
Wugmama's Avatar
 
Join Date: Feb 2005
Location: Minnesota
Posts: 2,307
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm so sorry you are going through this. What a scary time! My thoughts are with you. Please keep us updated!



Tracy

Rockin' mama to Allison (9), Asher (5) and Alethea (3), head over heels in love with my sexy husband, Tony.

Wugmama is offline  
#24 of 338 Old 11-08-2008, 02:20 PM - Thread Starter
 
ellasmama2007's Avatar
 
Join Date: Jun 2008
Location: near tampa, fl
Posts: 991
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
ellasmama2007 is offline  
#25 of 338 Old 11-08-2008, 02:37 PM
 
~Twighlight~'s Avatar
 
Join Date: Oct 2008
Posts: 56
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
~Twighlight~ is offline  
#26 of 338 Old 11-08-2008, 03:14 PM
 
MoonWillow's Avatar
 
Join Date: May 2006
Location: Pemberly
Posts: 3,857
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
MoonWillow is offline  
#27 of 338 Old 11-08-2008, 03:27 PM
 
mtn.mama's Avatar
 
Join Date: Mar 2007
Location: Off the grid, AK
Posts: 3,110
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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...

chicken3.gif   We're remote ECing, unschooling, free ranging goat dairy farmers.  

mtn.mama is offline  
#28 of 338 Old 11-08-2008, 04:20 PM
 
changingseasons's Avatar
 
Join Date: Mar 2008
Location: Seattle
Posts: 8,756
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!!

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
changingseasons is offline  
#29 of 338 Old 11-08-2008, 05:15 PM
 
tbone's Avatar
 
Join Date: Dec 2006
Posts: 792
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
tbone is offline  
#30 of 338 Old 11-08-2008, 06:28 PM
 
lil_miss_understood's Avatar
 
Join Date: Jul 2006
Location: Oregon
Posts: 10,563
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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. :

Wife of Michael , SAHM to Aristotle 09/99 Raphael 06/07 and Marius 05/09 Known only in dreams but never forgotten: Euphrates Decluttering 290/2010
lil_miss_understood is offline  
Reply

User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off