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marlene
MemberGlad to hear he came through surgery. This has/had to be a difficult one.
On to the next step!
Marlene
MemberPer the latest update from the makers of Exjade, therapy should not begin until your serum ferritin is at 1000.
MemberWarren,
Are you getting red cells still? If so, it really depends on how often you are getting them. If you’re getting red cells, then the Exjade will keep you from accumulating more iron and may even reduce what you have. But I wouldn’t look for major drops in FE. Ferritin, once it’s elevated above 2000 can really fluctuate and not really represent a true reading. Once you get down to around 1000 – 1500, you’ll see it drop quicker. John’s is at 785 and it still jumps up by 200 points from time to time.
MemberLet me just go on record and say I’m not a doc so anything I say is based on my 6 years of learning by dealing with this as a caregiver.
1) My first reaction is that if you had Iron, B12/B6 issues two years ago, is that it continues to be an issue for you today. I would look into getting your levels checked again. There are many reasons for low iron, b12 or b6….Ongoing blood loss could deplete your stores but I doesn’t sound like this is your issue. Other reasons are associated with malabsorption. You may not be pulling out the nutrients from your food. Low stomach acid due to using heartburn medicines; Gluten (wheat, oats, etc) intolerance will interfere with getting nutrients. If you’ve been a vegan for several years you may not be getting enough of iron or b12. Anyone who’s had gastric bypass sugery, irritble bowl, etc. may not get nutrients. You can ask your doctor to check these if they have not done so in the past year and make sure to get the exact numbers/levels. Increasing B12, B6 and folate are very easy to do with over the counter supplemets in the bio-available form. You really don’t want to add in iron unless you are low. The B vitamins effect both your neurological system and blood production.
2) NIH is the National Institute of Health in Bethesda, MD. You may want to talk to your insurance and ask them about getting second opinions. I don’t understand why going for a second opinion would hurt your chances of seeing your current medical practice. You shouldn’t have to to tell them your going for another opinion. Someone else on this board may know of a good doc in Indiana they could recommend. Or check on the other board I mentioned.
3) Grans are the same and 1.7 is decent level. You can fight any infection with that level. In my mind, Neupogen is reserved for when it gets really low and you are fighing something. John’s was well under 1 for a long time and he remained infection free without Nuepogen.
4) Alway look at any meds you are taking. http://www.rxlist.com is pretty thorough on side effect and keeping current with new warnings.
Lastly, if you would rather continue this privately, you can email me directly at mschmidt06@cox.net. I not sure a low WBC, given what yours are, is causing all this chaos for you.
MemberHmmmm. If your last BMB was in 04 and they “think” it may be MDS, then I don’t understand why they won’t do a new/current BMB. Just based on that, I would seek out another opinion. I would also get copies of all your record which include your BMB so you have them.
Since you are seeing a Rhuemy, do you have a current autoimmnune disease that can effect your bone marrow also? Or do you have an chronic infection that may be taxing your white cells? And, I assume, since you said you had iron pills at one time, they have checked your iron, B12, folate, B6 and copper levels. All play a role in blood production.
You can always go to NIH for second opinion or find another doc who’s local. I would continue to pursue this.
With those counts, you can live a fairly normal life even with a white count of 2.8, so it sounds like something is going on if you’re feeling poorly. Do you know what your ANC (absolute Neutrophil count is? (also known as granulocytes) These are a subset of your white count that are essential for fighting infections.
Another forum for you to check out is:
http://www.marrowforums.org/index.htmlMarlene
MemberHi Neil,
I cannot image all that you are going through. I am glad your surgery went well and I hope everything else resolves soon.
Wishing you only the best…
Marlene
MemberRebecca,
Try not to pay attention to the prognosis time frames. Many are outdated and really do not serve much of a pupose in my opinion. You will find many have and continue to live way past the stats.
The way I’m understanding your husband’s situation is that he had a small response to the ATG but not enough to raise his counts to safe levesl. Meaning that he’s still getting transfuions and his white count is still very low. And that the docs think he may be progressing to MDS but they don’t know yet.
Base on this, I would recommend you take a look at another forum which deals with aplastic anemia. You can look at the posts on the forum for people going through similar problems with AA. Also, Bruce, who sponsors this site, was diagnosed with AA back in 99 and is now dealing with MDS. Another member’s husband was originally diagnosed with AA and then Hypocellular MDS. So you can search on Lisa’s post. People go in and out of remission with AA and that does not mean their disease is progressing. Many have had to go through multiple ATG treatments before they saw a response. So spend some time here in case his disease has not progressed.
Hopefully this will give you enough knowledge to talk with the doctors because I don’t think you can really leave this in the doctor’s hands. You are doing the right thing by educating yourself. You are your husband’s best advocate.
http://www.aplasticcentral.com/
Take care,
MarleneMemberHi Rebecca,
Have they given you any indication as to why they think your husband does not have AA? You will make yourself crazy reading up on disease that your husband may or may not have…I’ve been there, done that. I personally feel they do patients a disservice by giving them an unsupported diagnosis (their best guess at the time). Many people with SAA who have done ATG/Cylco may not respond to the first treatment and need a second treatment. Also, it can take up to a year for ATG to work.
It may be time for a second opinion. There’s a Dr. Majewski (spelling?) at the Cleveland Clinic who’s very familiar with SAA. You may also want to look into going to the NIH. Dr. Neil Young is highly respected in the AA community.
Like Neil said, once you know the diagnosis, you can focus your attention on a few treatment option.s. It’s still overwhelming but more manageable than trying to understand all of them.
Marlene
MemberThere’s an artlicle link at the link below on MD Anderson’s work with this drug you may find useful.
MemberThat’s good news Mary!
MemberMary,
See if this link helps to further your understanding. It’s pretty much is what Jim has said
http://www.cancer.org/docroot/ETO/content/ETO_1_4X_Blood_Transfusion.asp
MemberHi Mary,
Ilness and fevers can chew through RBCs and platelets. I’m not certain of the mechanism but illness will effect blood counts. They should rebound when things resolve. For John, it can take a while before we see them get back to his normal range.
Marlene
MemberThat’s good to hear…..Marlene
MemberYou may want to have them slow down the rate of the platelet transfusions. One time they ran John’s in at a faster rate giving him hives from head to toe. They stopped the transfusion, gave him a steroid (two doses) and waited for the reaction to calm down. Once it was under control, they started it up again a slower rate.
After that, they upped his dosage of premeds. He never reacted that severely again. But always ended up getting some hives from his platelet transfuions.
February 28, 2008 at 7:39 pm in reply to: Worried re: Journal of the American Medical Association warning #20304MemberHi Jack,
We never had to deal with blast since John had SAA. But there really was no choice but to wait for his counts to come up. Without sufficient stem cells in the bone marrow, there’s nothing for the growth factors to work on. So until the stem cell population started to recover, the GCS-F had no effect. SAA is a waiting game. You get treatment over 4 days and then wait and see what happens.
John’s treatment at Hopkins is designed for the majority of it to be done as an outpatient. The initial chemo is done in the hospital and then you are sent home. They fully expect, and want, your counts to zero out….all three lines. And unless you spike a fever, you continue your supportive therapy as an outpatient. If you do spike a fever, then you get treated as an inpatient until you go 48 hours without a fever. They will not discharge you until the fever is under control. We met a lady who did her entire mini transplant as an outpatient. Not once did she need to be admitted.
Marlene
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