My husband seemed to be responding to the monthly Xofigo injections until the 4th one on Dec 5th, which caused his blood numbers to crash. He ended up in the ER 2 weeks later, on Dec 20th, with hemoglobin around 6, so they gave him 3 red blood cell transfusions which brought him up to 8.4. (we were told some patients require transfusions to get through all 6 treatments) A follow up blood test yesterday, Jan 10th, showed his hemoglobin was back down to 6.8, so the 3 transfusions effect was short term. They gave him 2 more units of red blood cells. Xofigo treatment #5 and #6 may be permanently put on hold.
Oncologist said 95% chance cancer is filling up bone marrow, so marrow can't recover/rebuild, and nothing he can do but give transfusions as needed, and watch numbers to see if they improve. He said there's a 5% chance extremely depressed CBC numbers are more from the Xofigo, not the cancer. fwiw - my husband did not handle the radiation to his spine well in early 2018. It worked, but it really depressed his CB numbers, which took a while to come back. So I'm wondering if this could be similar, and hoping/praying we're in that 5%!!!
** See full blood test results and treatment history, etc. in my response to Roast85 in this post: healthunlocked.com/advanced...
Don't know where to go from here - just wait? If cancer is taking over bone marrow, how could we treat? Stem cell transplant? Bone marrow transplant? Would Xtandi help? Can that treat bone marrow invasion?? He hasn't tried that yet. Diagnosed in Feb 2017, He's had standard of care HDT, Chemo (Docetaxel), Radiation to lower spine followed by 1 treatment of Jevtana + Carboplatin (dropped blood numbers way too low to confinue this chemo - likely because started day after 10 radiation treatments to lower spine ), so instead, Lynparza (due to mets in liver - it worked!!) + Zytiga & pred, switched from pred to dexamethasone, then stopped Lynparza so he could start Xofigo while staying on Zytiga + Dexamethasone.
My husband is on a the list at Cornell for the AC 225 treatment. He wanted to wait until they could figure out a way to protect the salivary glands.
Still having odd severe joint pain that comes/goes, esp in knees. OXY 5's, fast acting seem to help a bit - take the edge off. May consider trying cannabis, but don't know where to start with that!
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Sounds like his doctor has got it right. Radium 223 is an alpha emitter and alpha particles are not able to penetrate the bone marrow. That makes it very unlikely to be the Xofigo, and probably bone marrow invasion. He could have a biospy to confirm since there are also other cancers that can cause those low blood numbers. He can do molecular testing for treatable mutations if that hasn't been done already.
If his counts come up, he could have chemotherapy. From what I could see from the post you linked, they are too low now. Do you know what his absolute neutrophil count is? Not the percentage. That's one of the most important counts. If the counts improve, there is also LU-177, but only outside the US for the time being.
As far as cannabis goes, I have experience and it worked quite well for me when I used it. It also helps you sleep which is an added benefit. What state do you live in? You should be able to go into a dispensary and get help choosing the best product. I have a friend who has severe neuropathy and he me told that a 1:1 ratio of CBD to THC works best.
Thank you so much for your response and kind words. We're hoping and praying his counts stay up and improve after this last infusion.
I'm confused when you say it's unlikely the Xofigo had anything to do with the low counts because low RBC and WBC counts and low platelets are listed as one of the most common side effects of Xofigo: rxlist.com/xofigo-side-effe... I'm also wondering if the fact he was on Lynparza for 1-1/2 years (which also depresses blood counts), up until about a month before his first Xofigo injection, may be of importance.
His absolute neutrophil count was 1.47 yesterday. Previous counts were: 12/31: 2.18, 12/21 (after his 12/20 transfusion) 2.06, 12/20: 1.03 (before his first infusion), 11/26: 2.42, 9/18: 2.89, 9/6: 3.93 There's also an "auto" absolute neutrophil which is a bit lower: yesterday, 1/10: 1.26, 12/31: 1.89,11/26: 2.16, 9/18: 2.67, 9/6: 3.93. I don't know what the difference is between the two, but I see the normal range is the same for both: 1.12 - 6.78
I'm glad to hear the cannabis worked well for you! Did you try any of the topical treatments? We live in IL, where it just became legal as of Jan 1st. There have been warnings that because it is an uncontrolled substance, to be careful, as some people are having some unpleasant side effects. Thank you so much for the recommendation!
You are right, myelosupression has been reported. But when you look the adverse effects, you also have to consider the grade. For example, one problem is grade 3-4 thrombocytopenia, but that is 3% of patients. Grade 3 is 25-50 and Grade 4 is <25. You can continue Xofigo as long as you are not above grade 2 so only 3% of patients would be too low to continue. Another thing to consider is Xofigo is often done as one of last treatments, too late in the opinion of many doctors. My doctor said for that reason it often gets blamed for problems related to the cancer such as bone marrow failure
For Xofigo, ANC needs to be above 1.5 to begin treatment, and then above 1 to continue treatment after the first round.
You can also look up the prescribing sheet for chemotherapy and see where his numbers are compared to where they need to be.
I used the cannibis flower, Indica strains. One inhalation on a pipe is enough for me. Not worried about such a small quantity of smoke with way more toxic cancer treatments going into my veins. I prefer to smoke over edibles because you know how much you got right away. Good luck.
I wonder if switching from Zytiga to Xtandi might be helpful? He's already been getting the Xgeva shots (denosumab) - although they forgot to give it yesterday!! (felt like they were saying there's nothing more we can do, and dismissing him!) It sounds like this worked for the 64yr old man with bone marrow metasteses in this article:
Disseminated carcinomatosis of the bone marrow (DCBM) is caused by cancer metastasis to the bone marrow and is often accompanied by disseminated intravascular coagulation (DIC), with rapid clinical progression. We herein report two cases receiving treatment with combined androgen blockade (CAB) and denosumab for prostate cancer with DCBM. ...................................................................................... The patient in case 2 was a 64-year-old man who was admitted with bleeding after a tooth extraction. After a diagnosis of prostate cancer with DCBM, CAB therapy was administered. Enzalutamide was administered following development of CRPC, and the patient has not since experienced an increase in prostate-specific antigen, recurrence of anemia or DIC. To the best of our knowledge, these are the first documented cases in which DCBM was treated with denosumab and enzalutamide.
Exceptional Response to Pembrolizumab in a Patient With Castration-Resistant Prostate Cancer With Pancytopenia From Myelophthisis: A Case Report
ASCO Publications Corner
01.02.2020 ASCO Reading Room
Reprogramming the Tumor Microenvironment to Improve Immunotherapy: Emerging Strategies and Combination Therapies
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Resumption of Immune Checkpoint Inhibitor Therapy After Immune-Mediated Colitis
Journal of Clinical Oncology
12.06.2019 ASCO Reading Room
Performance Status, Survival, and End-of-Life Care in Adults with Non-Small Cell Lung Cancer Treated With Immunotherapy
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Panagiotis J. Vlachostergios, MD, PhD; Julia T. Geyer, MD; John Miller, MD; Rebecca Kosloff, MD; Himisha Beltran, MD; and Scott T. Tagawa, MD
Journal of Oncology Practice
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Below is the abstract of the article. The full journal article is available to read for free on MedPage Today - click here or in the link below
Introduction
Myelophthisis is a type of bone marrow failure resulting from infiltration by cancer cells and manifests with peripheral cytopenias. Although rare in metastatic solid tumors, lung, breast and prostate are the most commonly associated primaries. Besides transfusion support, little is known about the efficacy of systemic therapies in such patients. The condition itself may be a barrier to optimal dosing of cytotoxic chemotherapeutics.
Metastatic castration-resistant prostate cancer (CRPC) remains lethal despite recent therapeutic advances. Although a survival benefit led to the U.S. Food and Drug Administration approval of the cell-based cancer immunotherapy sipuleucel-T in patients with asymptomatic CRPC with nonvisceral metastases, all other randomized trials of immunotherapy have been negative to date, and prostate cancer is believed to be a relatively immunologically "silent" tumor with respect to immune checkpoint inhibitors. The anti–programmed death-1 (PD-1) checkpoint inhibitor pembrolizumab was recently approved for unresectable or metastatic solid tumors characterized by high microsatellite instability or mismatch repair (MMR) deficiency, including prostate cancer.
Up to half of patients with metastatic prostate cancer and germline and/or somatic MMR mutations may experience significant responses to PD-1 inhibition; however, more data are still needed. Herein, we describe a patient with MMR-deficient metastatic CRPC with widespread metastases involving the bone marrow causing myelophthisis, who responded to pembrolizumab.
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Exceptional Response to Pembrolizumab in a Patient With Castration-Resistant Prostate Cancer With Pancytopenia From Myelophthisis: A Case Report
Hard to decipher all of this, but I think they're saying that prior treatment with chemo can contribute to the bone marrow failure after Xofigo injections. My husband also was on Lynparza for 1-1/2 years, which suppresses bone marrow, so he had to stop it in preparation for Xofigo. Given Lynparza is fairly new for CRPC, they likely have too little data showing whether Lynparza also makes the bone marrow more fragile, and increases risk for failure getting Xofigo. I bet it does.
From palliative therapy to prolongation of survival: 223RaCl2 in the treatment of bone metastases
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Heading down hospice road too…
Bone Marrow and blood cells
Just checking to be sure 6 month break after 5 week radiation treatment is the next best step? 
The final end of the battle.
