our oncologist appt :( - Page 3

[mommydancer]

You poor thing. I would be totally freaked out in this situation too. You have a lot of very valid worries. You can only handle one day at a time. Ask the questions you have...keep a list for when you have an appt. and get numbers and names for nurses to call to ask questions in between. Be gentle with yourself...it is hard to cope with this experience. And there are a lot of unknowns still. It is good you are posting, too. We are here for this.

[superstella]

Oh wow, I can relate to so much of what you wrote! Click the link in my sig, that's my dx at the moment. However, they want to repeat my biopsy in Jan. because my pulmonologist thinks mine may be bronchoalveolar adenocarcinoma (rare lung cancer). Either way, in my case, it's a terminal dx.

My eosonophils were elevated too, especially in my lung tissue, and originally they thought it was an eosonophilic pneumonia and allergies. I do have some IgE mediated reactions, but it really isn't clear what's causing the fibrosis in my case. At any rate, I don't think you have the same dx as me, but I understand where you are coming from with the fear and the frustration.

I am on a whole SLEW of medications now, most of which are experimental as there is no effective treatment for this disease. I go to a big university doctor who knows ZERO about alternative treatments or supplements or whatever. He doesn't want me on any either. Then I have my local pulmonologist who disagrees and wants me on different meds... I'm on a chemo drug, steroids, 2 different asthma meds, anti-inflammatories, you wouldn't believe. Sometimes I get so frustrated and want to flush them all, but then I think of the alternative and realize it's the only chance I have and I know diddly about treating this disease on my own so I don't really want to risk it you know?

I do consult an ND who helps me with supplements and I feel comfortable in trusting her advice on this issue. If you can find someone to consult with, I highly recommend it. She can't help much with my fibrosis issue, but she can tell me how to support my body systems so as to have the best chance of recovery. What I do is research with my ND what is appropriate with the meds I am on (for example, I can't take echinacea because it interferes with the chemo med I'm on!) and then I don't bother to tell my pulmo about all the supplements. I have better ways to spend my time than arguing with him, and while he is very educated on lung diseases he is sorely lacking in knowledge re: alternatives. In my case I don't have much to lose.

Also, I did have to wean my youngest to start the chemo meds, and it was much easier on him than it was on me. I am still sometimes sad about it, but he was fine, really. And while breast is best, having a healthy mama around for as long as possible is definitely preferable and there is no shame in having to switch to formula. I'm not saying it's optimal or desired, but if it becomes necessary allow yourself to grieve and realize that you are still doing the best for ella.

I have to run out the door right now, but please PM me if you want to talk or if you want to ask about anything. I've been there and I understand SO MUCH of what you wrote, I almost could have written it myself. I am so sorry that you are having to deal with this at all, that any mama ever has to deal with it.

[momma_c]

i just wanted to send hugs to you!
so sorry you are dealing with this momma

[ellasmama2007]

Originally Posted by Chinese Pistache

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

thank you all so much again, i cant say it enough. you are all awesome.
i def am going to try to get whichever oncologist i chose and ellas ped to collaborate. i think so much of my fears right now stem from not knowing why this is happening to both of us. im just so worried she is incurring damage to her little body that we dont know about. i just wish someone would connect the pieces for us.

superstella, my heart is broken for you. thank you so much for sharing your story with me. you seem like a really good person. if you ever want to chat, ill be here for you as well. im so sorry that this has happened to you. and im so sorry that you had to wean like that as well.

i almost feel like i dont know how to be her mama without bf. isnt that silly? its just...what we do together. its how she naps and sleeps at night. its our close time that we touch and coo back and forth with each other. when she feels like she needs to cling to me, i nurse her. i just bf her all day and night every day. she grabs my face and i examine her and we relax. i know i need to get over it, but i dont even know how to try.

jessica, i tried to find out my percentage of eos, but somehow they didnt know (?!), but ive been thinking about you and your dd's. it just seems like such a coincidence that your eos are high like mine and so are twilights and we are in the same boat with the mult allergy babies.

[changingseasons]

Originally Posted by ellasmama2007

i almost feel like i dont know how to be her mama without bf. isnt that silly? its just...what we do together. its how she naps and sleeps at night. its our close time that we touch and coo back and forth with each other. when she feels like she needs to cling to me, i nurse her. i just bf her all day and night every day. she grabs my face and i examine her and we relax. i know i need to get over it, but i dont even know how to try.

jessica, i tried to find out my percentage of eos, but somehow they didnt know (?!), but ive been thinking about you and your dd's. it just seems like such a coincidence that your eos are high like mine and so are twilights and we are in the same boat with the mult allergy babies.

No, that's not silly at all. I totally understand- I can't even imagine not BFing.. It would be a hard change to go through, but we'll be here to help you get through it if that's what happens.

That's weird that they measure the eos 2 different ways. I'm going to the doc tomorrow anyway for some other weirdness that I'm having... so I think I'll have them do bloodwork again and see if anything's changed since my last tests. Maybe she can tell me the difference in the numbers too.

[kjbrown92]

Can we back up a minute. You have the high eosinophils but they don't know yet exactly what's causing it right? I know, I know I jump to the worst conclusion too. But all I did was do some google searches for "reasons for elevated eosinophils" and there are other causes besides Hodgekins Lymphoma.

Eosinophilic Disorders

Causes of High Eosinophilic Levels

Yeast

So it IS possible that it's something else, and that Ella is reacting to your allergies or yeast or something. And I know it's going to make you crazy until you find out for sure what it is. And maybe it is Hodgkins (a close friend of mine's neighbor has it and just got done with chemo) but maybe it's not.

My grandmother didn't call me Pollyanna for nothing.

And it was hard for me when each of my children weaned. Two out of the three stopped cold turkey when they were too young and wanted nothing to do with me, even when I pumped for them. And I felt like it was a complete rejection of me, so BFing is a big part of being a mama. But there are lots of other parts too.

I just want to hug you and I'm not even a huggy kind of person. You're a very strong woman. Look at all you've done so far for your daughter. We're all hear listening if you need us.

[nalo]

just wanted to send warm and supportive thoughts to superstella and ellasmama. superstella's post pretty much broke my heart. i wish you strength and courage and love. and ellasmama - may you find out the best possible news as soon as possible. strong healing vibes are coming your way.

[superstella]

Originally Posted by ellasmama2007

thank you all so much again, i cant say it enough. you are all awesome.
i def am going to try to get whichever oncologist i chose and ellas ped to collaborate. i think so much of my fears right now stem from not knowing why this is happening to both of us. im just so worried she is incurring damage to her little body that we dont know about. i just wish someone would connect the pieces for us.

superstella, my heart is broken for you. thank you so much for sharing your story with me. you seem like a really good person. if you ever want to chat, ill be here for you as well. im so sorry that this has happened to you. and im so sorry that you had to wean like that as well.

i almost feel like i dont know how to be her mama without bf. isnt that silly? its just...what we do together. its how she naps and sleeps at night. its our close time that we touch and coo back and forth with each other. when she feels like she needs to cling to me, i nurse her. i just bf her all day and night every day. she grabs my face and i examine her and we relax. i know i need to get over it, but i dont even know how to try.

jessica, i tried to find out my percentage of eos, but somehow they didnt know (?!), but ive been thinking about you and your dd's. it just seems like such a coincidence that your eos are high like mine and so are twilights and we are in the same boat with the mult allergy babies.

Aw hun, that's not silly! Of course bf'ing is a big part of your relationship but if you had to you'd learn other ways to connect. I'll keep sending some positive vibes your way that you won't even have to deal with it or worry about it at all, and that you'll keep on bf'ing as long as you both want to. And you certainly don't have to try just yet, so try not to get yourself all worked up until you have more information. I just wanted to throw my story out there to let you know that it's okay to grieve that relationship if you do have to wean, and ella will be okay (probably more okay than you if my situation is any indication).

I'm going to be looking for updates, so please keep us posted and do let me know if I can be of any help.

[ellasmama2007]

oh girls, please dont think that im saying anything to the effect that bf is the most important part of mothering or anything remotely like that. im just so absorbed in the way that i know how to care for dd, the way i have been doing it for the past year +. im just right in the midst of bf and weaning seems like this big, scary, sad thing for us right now. i know what you are all saying about finding other ways to be close, and i know i will try to find them . it just seems overwhelming and sad.
kathy, thank you for the links. im was never huggy either, but i feel like it now too! the reason for the jumping to conclusions about what the heck is wrong with me is because my level is critically high, too high for allergies apparently (so the docs tell me). high enough for imminent organ/system damage. i was actually posting on the css syndrom thread last night asking calm or any of the experts if they thought yeast could realistically cause all this , in their opinions. i would be so lucky if that were the case.
superstella, i am in awe of your strength abd compassion right now. thank you for your words
jessica, im so glad you are going to the hcp, because i have been kinda worried about you and your dd's levels too. again, i dont know how our ranges compare. i would just be happy to know that you talked to your hcp again and they had something reasuring to tell you. i dont want to make you worry either.

[WuWei]

What probiotics are you on?

Have you started the diflucan?

I'm reading everything I can about eosinophils.


Pat

[WuWei]

JaneS recommends this book. I'm ordering it from Amazon. http://www.amazon.com/exec/obidos/AS...592631-6806458



Pat

[WuWei]

Have you all been tested for parasites? http://www.appliedozone.com/parasites.html

Pat

[WuWei]

double post. need to take a break...

Pat

[changingseasons]

Originally Posted by WuWei

Have you all been tested for parasites? http://www.appliedozone.com/parasites.html

Pat

I have- the results came back equivocal, so who knows...

ellasmama- I just had another blood draw and should have my results tomorrow. I tried asking the lady in the lab about the difference in how the eos is measured, but she didn't really answer my questions. But she did give me a copy of my blood test from May and June, and they're interesting (I forgot I even had a blood draw in May.) In May, my eos was 2 (normal is 0-4), so totally fine. Actually, everything on the CBC was in the normal ranges. In June, my eos was 25, my polys was low (I haven't looked that up yet.. no clue what the polys are), and they couldn't do a platelet count because there was "platelet clumping"... no clue what that means either. I guess we'll see what my results say tomorrow.

How are you holding up today?

ETA: Just looked up the polys- they are a type of white blood cell involved in fighting bacterial infections. Still Googling....

[WuWei]

CONCLUSIONS: Marked reactive eosinophilia may occur secondary to invasive candidiasis. Treating the underlying infection, in this case, Candida parapsilosis, was temporally related to improvement of eosinophilia.

http://www.jacionline.org/article/PI...33586/fulltext

This is a pharmaceutical patent discussing Fungal antigens and eosinophil activity, specifically, chronic rhinosinusitis.


http://www.freshpatents.com/Fungal-a...pe=description

I found this: American Partnership for Eosinophilic Disorders
http://www.apfed.org/glossary.htm

I'm curious about any respiratory inflamatory process in you. http://lib.bioinfo.pl/pmid:17379495

I just read that the most common cause of eosinophilia is due to helminths (parasites). Malignancy is an uncommon cause. http://www.sma.org.sg/smj/4105/articles/4105cr3.pdf Eosinophilia rarely impacts mortality.

This inquiry is related to Rhogam and Candidasis. http://forums.obgyn.net/womens-healt...9802/0459.html (note this question was in 1998!)



Pat

[springmum]

Originally Posted by ellasmama2007

oh girls, please dont think that im saying anything to the effect that bf is the most important part of mothering or anything remotely like that. im just so absorbed in the way that i know how to care for dd, the way i have been doing it for the past year +. im just right in the midst of bf and weaning seems like this big, scary, sad thing for us right now. i know what you are all saying about finding other ways to be close, and i know i will try to find them . it just seems overwhelming and sad.

I would completely feel the same way too, but just take it one day at time for now. Sometimes the "what ifs" will just eat at you, please be kind to yourself. You are a strong mama, and you will get through this.
**Hugs**

[Panserbjorne]

I'm sorry...may I ask if anything else was off with your bloodwork? Was is simply that the EOS were high? I mean, yes, they are HIGH....don't get me wrong. But was anything in the blood chem off? How was the rest of the CBC? Can you get a parasite test with antigens AND antibodies? Hugs, mama. You can get through this. There is always more than one path.

[rainbowmoon]

Originally Posted by DoulaMary

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.

I have read supplements and vitamins can help cancer grow and actually nourish it.

[ellasmama2007]

Originally Posted by WuWei

What probiotics are you on?

Have you started the diflucan?

I'm reading everything I can about eosinophils.


Pat

pat thank you for all your hard work and all the links. everything is very interesting. its funny the link about rhogam and allergies because i have so far asked 2 obs, 2 allergists and 1 oncologist if the rhogam could have done anything and they all just look at me puzzled and change the subject.
i am on lactobacillus duo 2 tabs/day and vsl#3 https://shop.sigmatau.com/VSL3/produ...lproduct_qty=2 2 per day. i started the diflucan on friday.

Originally Posted by changingseasons

I have- the results came back equivocal, so who knows...

ellasmama- I just had another blood draw and should have my results tomorrow. I tried asking the lady in the lab about the difference in how the eos is measured, but she didn't really answer my questions. But she did give me a copy of my blood test from May and June, and they're interesting (I forgot I even had a blood draw in May.) In May, my eos was 2 (normal is 0-4), so totally fine. Actually, everything on the CBC was in the normal ranges. In June, my eos was 25, my polys was low (I haven't looked that up yet.. no clue what the polys are), and they couldn't do a platelet count because there was "platelet clumping"... no clue what that means either. I guess we'll see what my results say tomorrow.

How are you holding up today?

ETA: Just looked up the polys- they are a type of white blood cell involved in fighting bacterial infections. Still Googling....

im hanging in there, thank you for asking . poor dh is not eating .
im so glad that you're getting your results tomorrow. i was worried about your eos, but 25 sounds a hell of a lot better than my 5221. keep me posted tomorrow if you want so that i know you're ok.

Originally Posted by WuWei

CONCLUSIONS: Marked reactive eosinophilia may occur secondary to invasive candidiasis. Treating the underlying infection, in this case, Candida parapsilosis, was temporally related to improvement of eosinophilia.

http://www.jacionline.org/article/PI...33586/fulltext

This is a pharmaceutical patent discussing Fungal antigens and eosinophil activity, specifically, chronic rhinosinusitis.


http://www.freshpatents.com/Fungal-a...pe=description

I found this: American Partnership for Eosinophilic Disorders
http://www.apfed.org/glossary.htm

I'm curious about any respiratory inflamatory process in you. http://lib.bioinfo.pl/pmid:17379495

I just read that the most common cause of eosinophilia is due to helminths (parasites). Malignancy is an uncommon cause. http://www.sma.org.sg/smj/4105/articles/4105cr3.pdf Eosinophilia rarely impacts mortality.

This inquiry is related to Rhogam and Candidasis. http://forums.obgyn.net/womens-healt...9802/0459.html (note this question was in 1998!)



Pat

i was reading about hypereosinophilic syndrome since my eos level points to the most severe form of that disorder on medscape http://www.medscape.com/viewarticle/520117 (you have to register) and these medical articles make it sound like im going to be dead in about 5 minutes!
doesnt it seem like such a coincidence that i started that thread on eosinophilic gastrointestinal disorders for dd and now my bloodwork comes back through the roof for eos?

Originally Posted by firefaery

I'm sorry...may I ask if anything else was off with your bloodwork? Was is simply that the EOS were high? I mean, yes, they are HIGH....don't get me wrong. But was anything in the blood chem off? How was the rest of the CBC? Can you get a parasite test with antigens AND antibodies? Hugs, mama. You can get through this. There is always more than one path.

of course you can ask! you're helping me! the only thing that was off on my bloodwork was the eos. i dont know the other numbers becaus my ob and onc both said they were normal. all i know is that the eos were 5221 and both docs were astonished.
i had parasite testing done on me and dd this past month because i was trying to rule them out as a cause for dds allergies and my leaky gut ( before all this started). we did 3 stool samples each, but i know parasites can sometimes be too high up in the intestines to leave any trace for the testing. i dont know anything about the testing itself, do they test for antigens and abs? im going to askthe onc to test me for parasites anyway because they keep popping up everywhere as a cause for high eos and even on the css thread, calm just suggested parasites as a viable cause.

[changingseasons]

Originally Posted by ellasmama2007

im hanging in there, thank you for asking . poor dh is not eating .
im so glad that you're getting your results tomorrow. i was worried about your eos, but 25 sounds a hell of a lot better than my 5221. keep me posted tomorrow if you want so that i know you're ok.

Oh no. Tell DH that he needs to keep himself healthy and strong to support you through this!!

I really wish I knew how to compare our numbers.... remember, my 25 is a percentage, not the actual number. I don't think that it's still anywhere near your numbers though because my doctors aren't too concerned. I will let you know how my numbers look tomorrow.