Waiting, reading, driving myself crazy!

[Vicki K]

Hi, this is my first time posting here, I have been lurking for several days and finally feel the need to post and ask questions. I currently am awaiting a visit with a hematologist, and I have another 8 days before this appointment.

I am currently a Stage IV Leiomyosarcoma ( LMS) patient ( it is a very rare smooth muscle cancer, even rarer that it was in my uterus), diagnosed almost 3 years ago. I had my original surgery ( hysterectomy) to remove the tumor, and adjuvant chemotherapy. Last July I had surgery to remove a lung metastasis, which puts me at the stage IV. With LMS, once it metastasizes it is likely it will show up again, and so I am always readying for battle.

I am seen every 3 months for CT scans and Oncology visits, and for over a year now we have seen my blood counts go low. Some have been hovering at low normal, until the past 6 months when they dipped lower, and some have been low but stable. My oncologist has many times discussed seeing a hematologist, and has also mentioned the possibility of MDS. I was feeling absolutely fine ( I happen to be a personal trainer and fitness instructor, so I am very active and health conscious! As well as stubborn and not wanting any more medical interventions than I already deal with) Well, the last two months or so I am not feeling fine. I am actually exhausted most of the time, only feeling better immediately after teaching a class, which are getting harder and harder to get through! However, it seems after any activity I need hours of rest and sometimes cant do much for an entire day. I have shortness of breath, dizziness, headaches, excessive night sweats which have become more frequent, strange itchy rashes popping up and a need to chew ice ( which I only realized after someone pointed out that I am doing it and it could be due to low iron?)

I just saw my oncologist again two weeks ago ( CT scans clear thank goodness!)and he immediately referred me to the hematologist. Anyway, I am so frustrated, my counts are not as low as so many I see on here, however I have read that if it is MDS it is the Cytokines that cause the exhaustion as opposed to only the HGB. I also know that having had chemotherapy (gemcitibene/taxotere..... taxotere seems to have a relatively high number of people who have subsequent MDS) puts me at a higher risk for this.

Anyway, I am so inspired by so many of you and so confused as to what's happening to me. I am posting my last 2 sets of labs ( just the abnormal results), any insight is more than welcomed!

I feel better already after writing this. I honestly can't believe I could possibly be developing a second cancer. Ugh.

3/12: wbc 2.9 rbc 3.76 hgb 11.7 hct 32.6 mch 31.1 mchc 35.9 plt 534 anc 2.03 alc .66

6/12: wbc 3.1 rbc 4.05 hgb 11.5 hct 35.3 plt 204 ( back to normal) anc 1.8 alc .87

Again, I realize my counts are not as low as a lot of you, but I am having these symptoms no matter how much I try to rationalize them..... seems like my wbc and neutrophils and lymphocytes are the main culprits?

Again, thanks for reading, any thoughts or if any of you started with these types of counts or if any of you have secondary MDS I would LOVE to hear from you!

Vicki

[Greg H]

Hey Vicki!

Welcome! I'm not a doc, just a guy with MDS, but your fatigue use sounds like you have something going on. It looks like all of your counts, except for your platelets, are kind of marginally below normal. I think a lot of MDS folks start out with those kinds of counts, if they are regularly seeing a doctor and having CBCs. Those who aren't sometimes don't get any indication until their counts go low enough to cause a problem.

You are definitely right that fatigue is a part of the disease that's not absolutely dependent on Hgb levels, and the researchers tend to blame cytokines. It's also true that sensitivity to hemoglobin levels is highly individualized. Some folks can have a 12 and no energy at all. On the other hand, the nurses at my treatment center told me about one elderly female patient who will start feeling a bit tired, drive herself to the hospital, and wind up having an HGB of 3! (I would be flat out with a 3.) Can you scare up any CBCs from several years ago and see where your Hgb was then? That might give you some idea of what your body is expecting.

I would expect your hematologist is going to recommend a bone marrow biopsy, which is the only way to figure out what's going on in your marrow.

Given all you have been through, I can certainly understand why you might not be anxious for more treatment. But some types of MDS can go safely untreated for years, while others are only going to get worse if left alone. So it would be good to find out what's going on in your marrow -- and, in particular -- which, if any, chromosomal abnormalities you have.

You mentioned iron, and, of course, your Hematologist will want to look at that, plus B12, Folate, copper, zinc, and some other stuff. (You aren't taking megadoses of zinc are you?)

Welcome to the forum!

Greg

[Vicki K]

Wow thanks so much for your reply Greg! I really appreciate your insights!

I'm definitely not taking any zinc at all, and because of the last three years of having cancer I have had my iron, ferritin and such tested, although it's been about a year and a half since the last time, and all was normal. I guess that could change though.

Question, can low iron cause the low white/anc/alc counts as well as the rbc/hgb/hct? I'm slightly confused about that one...

Unfortunately my gut is usually right about this stuff, and it's telling me now that I think there's a good possibility the chemo that was supposed to help me live may have caused me harm.

Oh, as for that BMB, yes, I'm kind of figuring I might need one of those.... wondering if I should ask for sedation? I have a high threshold for pain usually, and although I'm like a human pin cushion these days, it just doesn't sound like something I want to be awake for. Any input on that?

Thanks again!

Vicki

[Greg H]

Hey Vicki!

I'm not real smart about the way that iron, B12, Folate, and copper get involved in the production of blood cells, so I'm not actually sure if deficiencies in any of those can louse up your whites as well as your reds. Maybe Marlene will weigh in; she's really smart about minerals and vitamins and such.

There was a real good conversation about sedation and BMB on marrowforums here. The bottom line seems to be that everyone agrees its a pain in the butt but some folks find it much more traumatic than do others. Personally, it's not problem for me. But it is a definite problem for some folks.

If you've been reading about MDS, you know that most of the literature says therapy-realted MDS can be more serious and stubborn than de novo MDS. But I am nearly certain I read an article just the other day that provided some pretty good evidence to contradict that bit of accepted wisdom. Unfortunately, I can't seem to find it right now, and searching PubMed didn't turn up anything. If I find it, I'll get it to you.

The course of MDS seems to be highly variable from person to person, but the key to figuring out whether to do anything about it, and what, is really the BMB results. That will tell you the extent of dysplasia in your cell lines, any chromosomes out of whack, and your blast count (which is probably comfortably low, since your counts aren't that bad).

If the BMB shows that you have MDS, and your hematologist isn't an MDS expert, you might want to find one -- before setting out on any course of treatment. With your counts, there's no reason to rush into anything, and you'll want to make sure you are well-informed about and on board with whatever treatment is being recommended.

I'm sorry to hear about your fatigue, which has to be doubly challenging for a personal trainer and fitness instructor.

Take care!

Greg

[Vicki K]

So, yesterday I saw the hematologist. He was very kind and full of questions and also seemed to be knowledgeable, however a bit dismissive about some things which I am so sick and tired of with doctors as I'm sure most people here can relate to.

So, as for my previous blood results, he said he highly doubts it is MDS. He is saying that the low wbc, anc and alc counts have been hovering for a while and that because of my chemotherapy that may just be where they are going to stay. The chemo could have diminished those counts but he is not concerned and can show me countless numbers of prior chemotherapy patients who have similar counts. Ok, however I showed him blood results from about two years ago, after chemo but before the counts were lowered where those same counts were normal. My ferritin level from a yr and a half ago was 17 which he seemed concerned about. havent had it checked since then.

He thinks I have an iron absorption problem, and is doing a complete iron work up, and Greg I did ask for Copper, Vit D, etc which he agreed to test. He kept referring to my red counts as normal, but clearly they are not. Maybe because I am seen at a cancer hospital they are used to looking at lower counts, but my counts are not normal, they are low and have gotten lower over the past year or so.

Oh, and when I mentioned the cytokines being responsible for fatigue as opposed to just hgb, he was emphatic when he told me that absolutely not, the hgb in MDS is the only factor which would cause the fatigue. Hmmmmm.....

AND, he was telling me that my Neutrophils and Lymphocytes were fine, however he was quoting the relative %'s and I was trying to ask him if the absolute counts meant more and he literally talked over me and told me the relative % was most important. Again, Hmmmmm, kind of not what I've been reading here.

He was up in the air about doing a BMB, but I kind of insisted about that one! I mean, I dont WANT to go through it, but hellooooo, doesnt it make sense to just do it? So yes, I am having one next Monday. he told me he is primarily looking for cellularity. Question: does that mean that is all they will look for as to the MDS? Or do they have to look at all factors? Mutations, blasts, etc??

As an aside, based on the amount of medications I have become allergic to and the rashes that seem to be appearing randomly, he is checking for Mast cell activation Syndrome. Interesting...... Never heard of it, researching now, could make some sense.

Please any input you have is extremely appreciated. I told him about these forums and he kind of eye rolled, (me thinks) and explained that many people here started with these counts. He didnt seem to think so. According to him, nothing in my CBC's makes him suspect MDS. This would be great news for me, however, I don't want to miss anything!! Last time a doc blew me off for symptoms, 8 months later I was on the floor in severe pain and lo and behold, a fist sized tumor was squeezing a bunch of blood vessels..... so, I'm a little sensitive to being taken seriously I guess.

Thanks, sorry so long, anyone have any advice on what to ask before the BMB?? Anyone here start with counts like mine? ( above)

Vicki

[Greg H]

Hey Vicki!

Doctors can be a real pain in the tuchas, no?

Seems to me the big question is whether the substantial levels of fatigue you are having is linked to the marginally low blood counts -- or if something else is going on, unrelated to the blood counts. So, the BMB should answer some questions about whether you have something broken in your marrow.

(I wonder if very physically active folks are more sensitive than couch potatoes to lower Hgb. It would kind of make sense, given that really high performing athletes sometimes (illegally and unadvisedly) take EPO to increase their Hgb and their performance.)

All the BMBs that I have seen look at more than cellularity. The pathologist will provide a breakdown of the various types of cells blood cells in the marrow in their various stages of development and note any misshapen (dysplastic) forms. The presence of those dysplastic forms is the key to an MDS diagnosis. Low cellularity is a hallmark of aplastic anemia, though some folks have low cellularity with MDS. (hypo-MDS or h-MDS).

Sometimes BMBs include cytogenetic analysis, to see if you have any broken chromosomes. But this isn't always included. You might want to see whether they are planning to do this. It adds to the cost (though not the pain). Since the prognostic staging for MDS depends in part on which if any chromosomes are broken, not having cytogenetics in the BMB leaves you with less info than you need to decide about treatment, if in fact, dysplasia is found in your marrow.

Usually a BMB includes information on iron stores in the marrow. I'm not smart about iron stores, but I think knowing about it will help determine whether your marrow is not getting enough to work effectively.

Here's hoping your BMB is normal and you can go find some other reason for your fatigue.

Take care!

Greg

[Vicki K]

One more update: got a message from the doc..... my ferritin level was 6.4. Yup, that could explain a lot! Doc suspects it is an absorption problem, but we are still going ahead with the BMB. He wants me to come in and do IV iron this week. Cannot wait to feel a bit better!!

Thanks Greg for writing, you might be right about active people being more sensitive, makes sense. And I've been trying to teach classes and work out like a maniac with iron at 6.4. No wonder I spend the rest of my time in bed!

Will update after BMB..... not out of the woods just yet, but hope on the horizon I guess. All the best and good health to you!

Vicki