experience w/neutropenia?!

[pwallace]

hey all- my husband is dealing w/neutropenia. he takes casodex & tamoxifen daily. have any of you experienced this before? hematologist thinks it may be related to the tamoxifen, but isn't sure. worried about him being even more immunocompromised right now.

[Tall_Allen]

Discuss switching to Lupron, at least for now.

[pwallace in reply to Tall_Allen]

Thanks for the response. Do you think it could be the casodex? Have you heard/seen of this happening before?

[Tall_Allen in reply to pwallace]

I have not heard of that. But since we know that Lupron is immunoprotective, why not try to switch?

[pwallace in reply to Tall_Allen]

Yes that makes, especially now. Thank you

[Hidden in reply to pwallace]

I think it’s Great advice . Protect him from the public too. 🕊

[StevieR in reply to Tall_Allen]

I have been on Lupron now for 8 months after RP and follow up RT. WBC dropped pretty dramatically, but have come back up to normal; lymphocytes, however, went down and now are way down, with no clear reason. I have found one reference to this being a very rare possible side effect of Lupron, but not definitive. I have had a flow cytometry analysis with no additional insight provided by the test. I see Nal’s post below and will look into that as well. Any other thoughts or have you heard this from anyone else? Thanks very much.

[Tall_Allen in reply to StevieR]

Did your SRT include the pelvic lymph nodes?

[StevieR in reply to Tall_Allen]

Thanks for your quick reply. No, it did not. RP dissected 18 lymph nodes, with no cancer found (but pathology showed all other risk factors: G9, both SVI, EPE and positive margins, so adjuvant EBRT in conjunction with Lupron). I was thinking the same thing, but double-checked with my RO. EBRT was 39 treatments of 1.8, total 70.2, prostate fossa bed only.

[treedown in reply to StevieR]

My lymphocytes have been all over the place and my most recent blood work saw a sharp drop in neutrophils. Lymphocytes, monocytes and total WBC are below normal range. My Dr. is ok with it and thinks if it was going to cause problems it would have already. He is sure it is the zytiga but I suspect the Lupron as well. Either way no change to treatment for now. I guess he is waiting for something to happen first.

When my lymphocytes dropped to 221 during RT about 4 or 5 months ago I got real depressed based on what I read. My loving family got me right out of it and I decided from then on not to let blood results get me down as long as I feel fine. I am on the young side and I am pretty active and I have seen only increases in fitness since the end of RT so I will do what the Dr. said and not worry about it anymore.

[StevieR in reply to treedown]

Thanks for sharing your experience. My lymphocytes dropped from 1705 In June before my surgery and follow up RT + Lupron to 802 in December. I wasn’t sure if it was caused by 18 lymph nodes being removed, the RT, the Lupron or a combination. My RO said it was likely from RT, should bounce back. It then dropped to 200 in February, which really concerned me, but has now (June) come back to 806, still on the low side, but much better than 200. I read a study (sorry, I forget where I found it) that showed reduced lymphocytes persisting for quite a while after RT in a small percentage of cases, not sure if that applies to you or me. As I mentioned in my post, after my 200 result in February, my GP prescribed a blood flow cytometry test, which ruled out any serious blood disorder (whew!). At this point, since it has bounced back to 806, he is not concerned - same as your doctor. All the best to you and I will let you know of anything else I learn.

[treedown in reply to StevieR]

Thanks your pretty close normal range. How's your red blood cell count?

[StevieR in reply to treedown]

Was always in normal range until recent (June) results - RBC 4.11, Hemoglobin 12.6, Hematocrit 36.5; all slightly below range. WBC 4.11, also slightly below range. GP said not worrisome, will continue to keep an eye on every 6 months. I feel fine and will continue to hope for the best, not sure what, if anything, Lupron has to do with this. I’m now just past 11 months of Lupron, finishing up my first (and hopefully last!) stretch of Lupron. Have you seen other out of range blood results?

[treedown in reply to StevieR]

Per last draw, RBC, 3.62,Hemoglobin 11.3, Hematocrit 34.9, Vit D and Vit B12 low. Doubled Vit D I and saw it jump 4 pts in a month so will keep that up and started B12 as well. All else is good for now. Was doing CBC every 2 weeks going to once a month and CMP and PSA every 3 months. Started Lupron Oct 2019, Zytiga Nov 2019 and finished RT March 2020. PSA currently <.1 and feel real good. Walking approx 15 miles a week with elevation and riding 100-135 miles on bike every week. My Dr. feels confident I am not getting SE's due to my activity level so just another reason to keep it up. He told me Wed he has never seen anybody so tolerant to these particular drugs. But it is not a big city/hospital or a ctr of excellence so took it with a grain of salt.

[StevieR in reply to treedown]

Good luck keeping up the high activity level, that has to help quite a bit. I’m also working out 5-6 days per week, some days harder than others, but try to push through. I remember someone on HU describing the experience as having to work out twice as hard to get 80% of the results. That’s how it feels much of the time to me, but I guess it’s “character-building”. All the best to you and thanks again for sharing your experience.

[timotur in reply to StevieR]

My TLC was 1175 before HDR-Brachy and IMRT to pelvic nodes, and subsequently dropped to 250 just after tx completed. Six months later, recovered to 500. On Lupron the whole time, starting two months before radiation. Also WBC and RBC about 10% below lower limit.

[StevieR in reply to timotur]

Sounds very similar to my experience. How are you feeling? What does your RO think?

[timotur in reply to StevieR]

Well, I feel fine, other than muscle fatigue and some joint pain, most likely from 15 months of Lupron, which caused low RBC/Hgb/WBC, whereas the radiation to LN’s caused dramatically low lymphocytes. I’m trying to build up my O2 capacity and hemoglobin levels by eating beef/chicken liver 1x/week and taking a B12 supplement. Otherwise, not much else to do until ADT is done in three months, and see what happens. I see the RO in August, so will see what he thinks then.

[StevieR in reply to timotur]

Sounds good, hope that your August RO visit goes well. All the best.

[Hidden in reply to Tall_Allen]

You’re on it !

[pwallace]

His B levels are great, but we'll look into Methyl Folate and Copper. Thanks Nalakrats