Here is what we have been through so far.. any thoughts?

[Maesmom]

Hi,
Not sure if we are in the right place but here is what we have been through so far. Just wondering if any of this sounds familiar, any advice for a worried mom?

My 19 year old daughter has been having health issues for years but the last year has been awful. Started with bad fatigue last fall and pain in hands which let us to a rheumatologist, nothing found, she said to watch and see if anything new showed up. Fatigue, nausea and night sweats, low grade fevers at the beginning of this year prompted a ton of blood work from the GP which showed some marginally low thyroid and anemia. Off to the endo who said no treatment. Back to the rheumatologist in Aug for worsening symptoms, more blood work which showed elevated sed rate and persistent low WBC & anemia. Sent to hematologist who has put her on high dose iron for anemia and said will do iron infusion if oral is not tolerated. She has only been on the iron for 10 days. She has had several rounds of low grade fever, night sweats, nausea, sometimes sore throat and debilitating fatigue and some random bruising but nothing horrible which we showed to the hematologist. Ultra sounds of spleen, ovaries, liver and chest xray by hematologist all normal. Here are all her labs:

10/7/2010 Done by Rheumatologist No Autoimmune Markers for RA etc. found.
WBC 4.2
RBC 4.19 L
HEME 11.13 L
Hema 36.1 L
MCV 86.2
MCH 27.0 L
MCHC 31.3
RDW 14.0
Neut 58
Lymph 34
Mono 7
Plate 187
Positive ANA 1:40 speckled Pattern

4/15/2011
EBV IfM 0.2
EBV IgG >8.0 High
EBV Nuclear Antiqgen Ab IgG >8.0 High
Iron Serum 28 Low
Iron Sat 8 Alert

8/23/ 2011
Sed Rate 34 elevated
CBC's continued to fall

9/26/2011- latest blood work by Hematologist
WBC 2.8L
RBC 3.67 L
HEME 10.7 L
Hema 31.4 L
MCV 85.8
MCH 29.2 L
MCHC 34
RDW 13.3
Mono 7
Plate 135
MPV 9.5

Auto Diff
Segs 43.1 L
Mono 6.2
Lymph 48.9 H
Eosin 1.3
Baso 0.5
Segs-Bands 1.2 L
EBV VCa IgG 5.63 H
EBV VCA IgM 0.41
Thyroglob Ab 22
Ferritin 26
B12 1007

Lots of labs between these dates in which they just continued to fall and this is where they are now.

Hematologist said CBC's could be due to EBV which I have found very little on in regards to how EBV affects the bone marrow. I got the feeling from the hemaotologist that she wanted to watch and see what happens which is real hard for a mom when she has watched her daughter stay chronically ill for several months. The Dr is well respected and trained at MD Anderson so I feel like we are in good hands. My questions are:

how long to we watch, how low do the labs go before a bone marrow test is done? Does this sound like it is getting serious? What would you do if this was your daughter?


Sorry so long, I tried to make it short but with months of problems and tests that is hard.
Best to all and thank-you for your time,
Barbara

[donna j.]

I'm so so sorry what you and your daughter are going through. Unfortunately, I have no knowledge to share with you, however there are some pretty impressive people on this forum and I hope they can enlighten and give some direction. I just wanted you to know you are in my thoughts...........

[Maesmom]

Hi Donna,
Thank-you for the kind thoughts and taking the time to welcome me here. Seems like a great place with nice as well as very knowledgeable folks.

I forgot to add that both of my husband's grandfathers died from some kind of Leukemia and his uncle has the same thing right now. Not sure if bone marrow problems are genetic or not.
Have a great evening,
Barbara

[Sally C]

Hi Maesmom,
Donna is so right - there are some geniuses on this web site - and I believe you came to the right place. In my uneducated opinion I would be concerned as well. But that your doctor trained at MD Anderson should be comfort as well.
This is a wonderful, informative, comforting and supportive web site.
Welcome!
God Bless!
Sally - wife of MDS patient

[Dick S]

I'm not as well versed as some here, but those numbers sure look, I say look, like MDS to me. What I'm going by is they are almost identical to some of my earlier counts.
Please let us know as it progresses.

[Maesmom]

Thank-you Sally and Dick.

Dick, did you start out with what looked to be iron deficiency and then evolve into MDS? The wierd thing is that her RBC counts went the lowest when she was taking her daily vitamins with iron on a regular basis and she had not had any heavy periods or anything that would cause heavy blood loss. She just started the 325 mg of FE 3 times per day after this latest blood work so we have no idea as to how that has affected the counts yet. The Dr. said she would see her in six weeks She is to take it with 500 mg of vitamin C. Meghan also takes D3 on a regular basis and those levels checked out normal.

What has me worried is this week was the 4th time in about 6 weeks that she has had this nausea, then low grade fever that comes up in the afternoon and she stays hot and sweats during the night and cool again in the morning but profoundly exhausted. And another couple of random bruises and mild sore throat here and there. I will be calling the Dr. office again just to let them know what is going on.

I have seen some lab values that show her level of platelets as below normal with 140 being the cut off but with this particular lab it shows the range as 133-450 so the ranges seem to have some variances.

She has been unable to start college classes and missed the second day of her first job this week which was a big deal for her. I just feel helpless and don't know how to help her right now.

[Hopeful]

Barbara,

Viruses will suppress the bone marrow. Her continued fevers could be destroying her platelets and RBCs, in combination with the iron deficiency. If her WBCs continue to decrease, it could be a sign that her immune system is becoming overwhelmed and not able to fight back on its own.

She really needs to rest and eat properly right now to give her body a chance to heal on its own. The doctors are probably waiting to see if this can happen without intervention. This is the best case scenario, although waiting is hard!

If a BMB was done now, and it showed a depressed marrow, it's unlikely that action would be taken right away. A virus can do this, and her counts aren't critical. So, that is probably why they are delaying the procedure - it would not change the course of action.

I hope her immune system kicks into gear, and she has a turn around!

[Maesmom]

Hi Hopeful,
Thanks so much for your input. I thought maybe that is why they are waiting before they do anything. I am praying she gets over this on her own. Unfortunately, her immune system has never been very good. We are letting her rest as much as she needs. She did not enroll in college yet. She just graduated high school but we knew there was no way she would be able to handle the stress of college with all of this going on. So as they say "the waiting is the hardest part"
Barbara

[Chirley]

G'day. These are exactly the signs/symptoms my niece had and it turned out she had Glandular Fever. It took many months for her to feel better and for her counts to recover.

Regards

[Maesmom]

Hi Cmeo1,
Thanks for the info. I will do more reading on the net about all of this.
Best,
Barbara

[Maesmom]

I have to say I am still confused as to the EBV lab results. She tested high back in April and not as high on the last round of tests and yet seems sicker that she was back in April. In other words even though the EBV lab results improved, her symptoms/immune system and CBCs are worse. Even after a summer of total rest. I will be calling the Dr. on Monday. Her low grade fever keeps coming back in the evening and you can just watch her go down hill. Her immune system has never been good. She has battled asthma, pneumonia, huge case of shingles when she was 12 and countless viruses all her life.

Barbara

[Dick S]

Originally Posted by Maesmom

Thank-you Sally and Dick.

Dick, did you start out with what looked to be iron deficiency and then evolve into MDS? The wierd thing is that her RBC counts went the lowest when she was taking her daily vitamins with iron on a regular basis and she had not had any heavy periods or anything that would cause heavy blood loss. She just started the 325 mg of FE 3 times per day after this latest blood work so we have no idea as to how that has affected the counts yet. The Dr. said she would see her in six weeks She is to take it with 500 mg of vitamin C. Meghan also takes D3 on a regular basis and those levels checked out normal.

What has me worried is this week was the 4th time in about 6 weeks that she has had this nausea, then low grade fever that comes up in the afternoon and she stays hot and sweats during the night and cool again in the morning but profoundly exhausted. And another couple of random bruises and mild sore throat here and there. I will be calling the Dr. office again just to let them know what is going on.

I have seen some lab values that show her level of platelets as below normal with 140 being the cut off but with this particular lab it shows the range as 133-450 so the ranges seem to have some variances.

She has been unable to start college classes and missed the second day of her first job this week which was a big deal for her. I just feel helpless and don't know how to help her right now.

Maesmom, I started out exactly like that with Docs recommending Iron and Vitamin supplements which I still take to this day, but they have been of little or no help at all. I get nauseous and can't hold down my coffee in the morning. Bruises are oh so common along with the sweats and chills. I freeze below 72 degrees. My numbers continue to slowly, ever so slowly continue to decrease and still I am on the "watch and wait" list. Why? Because they keep holding you off as long as they can because once the meds like Revlimids and Vidazas start, it gets real expensive real quick and I am at the mercy of the VA and Medicare, but that is problem and my cross to bear, it's a numbers game they play. But this disease is surely not an easy one and it is prolonged journey, so hang in there. Good luck with you and yours and my prayers will be with you always.

[mscrzy1]

Well, I can tell you that a good thing I'm seeing in her blood counts is that her MCV isn't high. MCV is the mean cell volume. When it runs high, it tells you that your bone marrow is having to work hard to produce the cells it needs to sustain you. Since hers is not high, it would make me believe that the issue at hand may have more to do with some other virus or illness that is affecting her counts rather than a bone marrow failure issue. However, the constant night sweats and fever are definitely concerning. It sounds like the doctors are doing the best they can, though. Her counts are definitely not critical, so keep that little ray of sunshine in your pocket and hopefully you will get answers soon. I have children myself (one of whom had health issues that went a couple years before diagnosis) and I know how horrible it feels to feel helpless when it comes to making your baby feel better.

[Sally C]

Originally Posted by mscrzy1

Well, I can tell you that a good thing I'm seeing in her blood counts is that her MCV isn't high. MCV is the mean cell volume. When it runs high, it tells you that your bone marrow is having to work hard to produce the cells it needs to sustain you.

Hey Angie,
My husband's MCV is 109.9 - high normal is 98 on his CBC. What does this mean? He's in a new clinical trial at NIH for Promacta to raise his platelets. While not setting the world on fire, his platelets were 28,000 on Thurs. This has enabled him to go months without a platelet transfusion (around 10,000 - 12,000 is when he would usually get transfused). His reds are holding as well although again not setting the world on fire - 8.8 last Thurs. They would transfuse him when he would get under 8. He has been transfusion dependent since 1/09.
Maesmom - Forgive me for hijacking your thread but I saw Angie's comment and hoped she could answer this. I have been watching his MCV steadily go up.
Thanks for any info you can give me.
God Bless,
Sally, wife of MDS patient

[mscrzy1]

Originally Posted by Sally C

Hey Angie,
My husband's MCV is 109.9 - high normal is 98 on his CBC. What does this mean? He's in a new clinical trial at NIH for Promacta to raise his platelets. While not setting the world on fire, his platelets were 28,000 on Thurs. This has enabled him to go months without a platelet transfusion (around 10,000 - 12,000 is when he would usually get transfused). His reds are holding as well although again not setting the world on fire - 8.8 last Thurs. They would transfuse him when he would get under 8. He has been transfusion dependent since 1/09.
Maesmom - Forgive me for hijacking your thread but I saw Angie's comment and hoped she could answer this. I have been watching his MCV steadily go up.
Thanks for any info you can give me.
God Bless,
Sally, wife of MDS patient

It means that his bone marrow is working harder to produce the cells it's producing. The higher the MCV, the harder it is working. Many times you'll see a really high MCV after treatments like ATG because your counts were suppressed so low while undergoing the treatment itself and your bone marrow is working hard to bring those counts up. My MCV after ATG was in the 120's. When my counts started to stabilize and then rise, my MCV started to go down. I've seen that when dealing with bone marrow failure, my MCV and blood counts are sort of like a teeter totter. Counts down, MCV up. MCV down, counts up. So, basically if his treatment starts to work and you see his counts start to rise, you'll probably see his MCV start to drop. But because the MCV isn't dropping yet doesn't mean that the treatment isn't going to work or working. I saw my counts respond first and then the MCV start to drop. I hope I answered your question.

[Marlene]

John's MCV usually runs around 107-110. It was normal before treatment. It can indicate a B12 or folate insufficiency/deficiency when high. Apparently, it's pretty common to see an elevated MCV in bone marrow disorders even when B12 and Folate are normal. You may want to ask what his levels are...they should be in mid to high normal range. A low normal is not adequate.

[Sally C]

Thank you Angie and Marlene for your answers!
He started the Promacta in March so I think we are seeing the best the Promacta is going to do for him. The steady rise of his MCV has been since starting Promacta. With all the blood tests he has had in the last 3 years I would think his B12 would be ok and he is taking folic acid.
I am tending to think the elevation is due to marrow stress.
Thank you again for your input.
God Bless,
Sally

[Maesmom]

Just updating. Meghan gets her first iron transfusion today as she simply could not tolerate the oral iron. She never was able to get up to the full dose without all kinds of gastro problems. She is getting 1 transfusion a week for 5 weeks and then more blood work.

Thanks to all for the encouragement and great info.
My prayers and best wishes to all of you!
Barbara

[usaf1125]

Tell your doctor you want a bone marrow test, be positive you want a bone marrow test now.

[Dove12]

Maesmom

She could also have Chronic Fatigue Syndrome because shes had it for so long....the fatigue symptoms...EBV turns into Chronic fatigue syndrome when symptoms last longer than three to four months..

[tytd]

Hi Barbara, I am sorry that your daughter has remained sick. I hope that the iron will help although the iron deficiency would not explain the low grade fevers and lowish WBCs. I think that I would wait on the bone marrow test until you see how the iron is going to work. Also since iron deficiency can be a sign of celiac disease, I would check to see if she has been tested for that. Good Luck and I hope she starts feeling better soon. tytd

OOps , I just noticed that this thread was old from last year so I hope everything turned out OK.