Pancytopenia and Bone marrow metastases
What kind of treatment has anyone with pancytopenia (low RBCs, WBCs, and platelets) and bone marrow metastases had, and how are you faring?
Comments
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Joined: Aug 2015 Posts: 1
JwCA5 wrote:
What kind of treatment has anyone with pancytopenia (low RBCs, WBCs, and platelets) and bone marrow metastases had, and how are you faring? -
Jw, I saw your posts, and I am sorry but I do not have any info to offer, but I am bumping your question to the top of the active threads, hopefully someone with info will respond soon. I hope you find the answers you seek. I am so glad you have found this wonderful website, It has been a blessing to me, and I hope you find tons of info here. Sending a hug ((JW)) your way.
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Bumping for JwCA5 (to keep your thread active). I can add that whatever tx you have, your onc will monitor your counts very closely, and if they do not rebound prior to your next scheduled tx, often that tx will be postponed, or a reduced strength will be used for future doses. But we would need more info' on your dx (are you ER+/-? Her2+/-?) and where you are with your txs (just starting or have you had some already?) to comment on specific meds. Deanna
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Thanks for your reply, Deanna! I've had two primary breast cancers, the first in spring 2003 (ER/PR+, HeR2-, Stage 11 - breast conservation and radiation) and the second, diagnosed 10 months later (Stage 11, HR/PR/-, Her2/+ - mastectomy, AC, Taxol, and Herceptin. I've also had 3 other unrelated primary cancers (endometrial in 2002, a rare primary bone cancer - chordoma- in 2003, and colon in 2013). None had recurred or metastasized until I developed pancytopenia this summer and was diagnosed with bone marrow metastasis in August (no mets on PET, MRI, or earlier bone scans).
The cells are weakly ER/+ (40%), and both PR and Her2/-. So closer to triple negative. I began weekly infusions of Abraxane two weeks ago and am slated for 10 additional rounds. My onc felt it better to start with the chemo now while my counts weren't too low rather than go the anti-estrogen route, given the weakly positive status and the length of time it would take to determine effectiveness.
There is little literature that I'm able to find for MBC diagnosed by bone marrow biopsy in the absence of other mets. ( I have read that the prognosis is "dismal" given the pancytopenia, although such prognoses have never slowed me down so far). I do far better, though, when I have reliable information about what to expect, Any and all info is most helpful!
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Thanks so much, Meadow. I appreciate the "bump". I just joined and am unfamiliar with the process!
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You are so welcome! I am so glad you did join!
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Hi, Bon. Because I have had both chemo and radiation (twice, one very high dose radiation for a primary bone cancer) for two of my cancers, my oncologist was anticipating either leukemia or MDS. It turned out to be metastatic breast cancer instead. I don't have MDS, according to the pathology.
The bone marrow, though, is the only metastatic location so far, and the pancytopenia (with the usual fatigue) is the only symptom. This, evidently, is quite rare as the first evidence of MBC. I don't have hyperthyroidism, either, but I appreciate your checking. It's so hard to find information on this situation.
I'm also glad to hear that your MDS isn't progressing! How are you doing otherwise?
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I'm amazed I found this thread. I have had pancytopenia that has required packed red cell transfusions and also platelet transfusions for over two months. My hDac inhibitor study drug was stopped and I continued to experience pancytopenia so much so, my ONC and the entire ONC department of the Cancer center agreed it was my mets invading the bone marrow. Now, the clincher: tried to get a bone marrow biopsy via aspirate last Friday and had 3 yes, three dry taps! to confirm what is being considered "the diagnosis" of progression of mets to marrow. I am tentatively scheduled for a second try tomorrow. This time on my right iliac crest because we beat up the left. I had a poor quality bone biopsy on the right 1 year ago. My request (I am a nurse practitioner, so I have some knowledge) try going to the sternum. Anyone, have a similar experiences? This will be my 1st progression of mets. Since my MBC diagnosis 1yr ago. Proposed treatment is chemo NOT the hormonal therapy and study drug that got me had me stable for 1 year. Also due for scans tomorro (with bloodwork). I am in panic and anxiety mode. There is a dearth of info,on marrow mets. Even on my site for healthcare providers Th hospital,pays for. Any insight will be greatly appreciated. Insomnia has taken over.
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Bone marrow mets have not been as well-studied as one might hope, and below from my MBC Guide is a list of therapies for low white, red, and platelet counts. The Guide is offered on a complimentary basis by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_31
Therapies to support the bone marrow
- Blood Transfusions
- Iron (please be careful with this, as described below)
- Folic Acid/Folate/Vitamin B9 (also be careful with this, as described below)
- Protein
- Vitamin A
- Vitamin B6 (Pyridoxine)
- Vitamin B12
- Blood Transfusion: In some instances, oncologists may recommend one or more blood transfusions if a patient's blood counts remain very low.
- Iron: Foods rich in iron can help bone marrow function more effectively.Some iron is stored in the bone marrow, spleen or liver. Most of the iron absorbed is used by the bone marrow for erythropoiesis, a process producing new red blood cells.Iron-rich foods include red meats, shellfish, cabbage, lima beans and iron-fortified cereals and bread. Consuming foods high in vitamin C may aid in the absorption of iron, and vitamin C sources include citrus fruits like oranges, grapefruit and tangerines.
Although the evidence is limited and mixed, it appears that iron deficiency might promote breast cancer in young women whereas excess iron might promote it in postmenopausal and older women. It is also possible that iron has a more important role in breast cancer metastasis than in its initial development. From: http://foodforbreastcancer.com/news/iron-deficienc...
- Folic Acid (Folate or Vitamin B9): This is a B vitamin that aids in platelet functioning and DNA synthesis, which is a vital step in cell reproduction and is needed for the bone marrow to produce red blood cells.A deficiency of this nutrient can lead to "megaloblastic anemia," in which the bone marrow produces large and abnormally developed red blood cells. A folic acid deficiency may also result in fewer red blood cells, depriving the body's cells of adequate oxygen and nutrients. Folic acid deficiencies may also cause atypical platelet growth.Adults usually require 0.2 to 0.4 milligrams of folic acid every day from foods such as brown rice, broccoli, brussels sprouts, spinach, chickpeas and fortified cereals, liver, egg yolk, beans, almonds, sweet potato, wholegrain bread, spinach, cabbage, oranges and peaches.
However, folic acid has been linked to the growth of mammary tumors in rats according to at least one study, so patients should be careful about taking it due to potential risk.From:http://www.ncbi.nlm.nih.gov/pubmed/24465421
- Protein:Protein-rich foods are broken down into amino acids, the building material for every cell in the body. Adults generally require an average of 46 to 56 grams of protein every day to help sustain healthy bone marrow and other tissue.Good sources include meat, poultry, fish, dairy foods, legumes and vegetables.
- Vitamin A Foods rich in vitamin A help regulate proteins generated in one's cells, which aids in cellular development. Vitamin A is particularly known to promote stem cell maturation in the bone marrow. Vitamin A-rich foods include carrots, sweet potatoes, cantaloupe, pumpkin, cod liver oil and eggs.
- Vitamin B6 (Pyridoxine) helps to form hemoglobin, the substance inside red blood cells that binds to oxygen. Like other B vitamins, it also plays a role in producing energy to sustain every cell in the body, including the bone marrow. Normally, people should have about 1.2 to 1.4 milligrams of this vitamin from their diet every day. Good sources include poultry, fish, eggs, whole grains, milk, potatoes and fortified cereals.
- Vitamin B12 is essential for the production of healthy bone marrow. Folic acid and vitamin B12 work together during hematopoiesis, the manufacturing of bone marrow blood cells. Vitamin B12 is available only in animal foods (meat and dairy products) or yeast extracts (such as brewer's yeast) and can also be administered by injection.From: http://www.drugs.com/health-guide/vitamin-b12-defi...
Therapies for Low Platelet Counts ("Thrombocytopenia")
- Neumega:This is a blood cell growth factor approved by the FDA for the prevention of low platelet counts.Clinical studies have shown that Neumega prevents thrombocytopenia and decreases the need for platelet transfusions in patients at high risk for developing a low platelet count.
From: http://www.texasoncology.com/cancer-treatment/chemotherapy/understanding-and-monitoring-your-blood-counts/
- Papaya Leaf may help boost platelet counts.One person on an online MBC forum wrote that she brewed dried papaya leaf to make a strong tea, and drank a quart a day for a few weeks.Her platelet counts rose dramatically, and she was able to avoid the blood transfusion that her doctors were ordering.After this success, the lady repeated this advice to a number of others who were experiencing the same problems, and each time the platelets came up significantly.When the author actually told a friend with low platelets about the papaya leaf therapy, this was her response: "When I got your message about papaya leaves, I called my friend who grows papaya trees.She gave me fresh leaves, and I was grinding them with juice and that I drank twice a day. Five days later I went to my oncologist for chemotherapy.My platelets almost doubled (they went from 35K to 59K) and four days later I was able to get chemo. I can't thank you enough! My oncologist asked me what helped and I told him about papaya leaves." Author's note: For those interested in fresh papaya leaves, they can be purchased at: http://www.bananaplants.net/frcutpaleand.htmlThere are also many places that sell dried papaya leaves, which can be brewed as tea.Dried organic papaya leaves are sold by Amazon at: http://www.amazon.com/100-Organic-Papaya-Leaves-Sifted/dp/B004VYXU12 If fresh papaya leaves are purchased, the recipe is as follows: Wash and partly dry several medium-size papaya leaves. Cut them up like cabbage and place them in a saucepan with 2 quarts of water. Bring the water and leaves to the boil and simmer without a lid until the water is reduced by half. Strain the liquid and bottle in glass containers. The concentrate will keep in the refrigerator for three to four days. If it becomes cloudy, it should be discarded.From: http://www.cancernaturaltherapyfoundation.org/health-articles-view.php?id=55 Although the recommended dosage in the original recipe is 3 Tablespoons three times a day, patients may want to start with less just to be safe.. One patient reported taking organic papaya leaf extract at a dose of 10-20 drops/day.Her platelets started at 88, the next week she took 20-30 drops daily and her platelets increased to 460.After she stopped taking the extract, her platelets fell back to 89.Once she added the papaya extract back and remained on it, her platelets remained in normal range.In addition to boosting platelets, papaya leaf extract boosts the production of key signaling molecules called Th1-type cytokines. This regulation of the immune system, in addition to papaya's direct anti tumor effect on various cancers, suggests possible therapeutic strategies that use the immune system to fight cancers. In fact, when scientists exposed 10 different types of cancer cell cultures to four strengths of papaya leaf extract and measured the effect of the extract after 24 hours, the papaya had slowed the growth of tumors in all the cultures. From:http://www.naturalnews.com/028472_papaya_breast_ca...
- Sharks Liver Oil and Chlorophyll Tablets: The husband of an mbc patient indicated that sharks liver oil and chlorophyll tablets successfully helped to maintain his wife's platelet counts.
- Steak, Pineapple, and Exercise: One person wrote that eating two organic steaks (she was vegetarian prior) and two pineapples per week boosted her platelets considerably. Additionally, exercising before taking a blood test may help to increase platelet counts.
- Wheatgrass, Pumpkin and Spinach can also be helpful as per: http://www.top10homeremedies.com/how-to/increase-l...
Therapies for Low Red Blood Cell Counts
Sharks Liver Oil and Chlorophyll Tablets: The husband of an mbc patient indicated that sharks liver oil and chlorophyll tablets successfully helped to maintain his wife's red blood cell counts.
Erythropoietin is a blood cell growth factor that selectively increases production of red blood cells.There are two commercially available forms of erythropoietin for use in patients, namely, Epoetin Alfa (Epogen or Procrit) and Darbepoetin Alfa (Aranesp).Aranesp is a unique, longer-acting form of erythropoietin and is more convenient because it allows patients to receive fewer injections than with Epogen/Procrit.From:http://www.texasoncology.com/cancer-treatment/chemotherapy/understanding-and-monitoring-your-blood-counts/
Warning: Before a patient can begin taking the above medications, they must sign an acknowledgment indicating that they understand the risks, which include the possibility that their tumor may grow faster and that they may die sooner.From: http://www.fda.gov/downloads/Drugs/Drugsafety/ucm088988.pdf and http://www.fda.gov/downloads/Drugs/DrugSafety/ucm0...
Therapies for Low White Blood Cell Counts ("Neutropenia")
- Astragalus has been known to increase white blood cell counts.
- Guava and red pepper may help increase white blood cell counts.One person advised blending 6 small guava fruits (or 2 large ones) with one organic red bell pepper and a cup of water.The juice should be consumed three times daily and re-made as needed.
- Olive Leaf Extract has been reported by some patients as being helpful in raising white blood cell counts.
- Colony Stimulating Factors (CSFs) and Growth Factors: Specific drugs called Colony Stimulating Factors can increase white blood cell counts and help prevent infection during chemotherapy.CSFs include Neupogen (filgrastim), and Neulasta (pegfilgrastim). Another CSF is Srgramostim (Leukine or Prokine).These medications are usually given as shots 24 hours after a chemotherapy treatment.In two Clinical Trials, a single dose of Neulasta was proven to be as effective as an average of 11 daily injections of Neupogen for the management of low white blood counts. From: http://www.choosingwisely.org/doctor-patient-lists...
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Bestbird, you are always so helpful ! Thank you!
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Bestbird,
Hugs and huge thank yous! At least someone has some information. I truly trust my ONC team at Fox Chase Cancer Center in PHL, PA but I needed to hear from this forum about anything I can do to help my beleaguered body. I am a nurse practitioner and started a lit search on my hospital search engine to sites they pay a huge fee to search. Not much out there on marrow mets.
The second try at a bone marrow aspirate came up with three more dry taps and this time it was CT guided and I had 3 radiation oncologists in the room. They did get a bone specimen that did not crumble into dust. We are hoping to,have results tomorrow. BTW, ruled out MDS and my TSH, T3, T4 are wnl for now.
As my ONC team that now includes hematology says, you are a real conundrum. I have bone mets that are more like those seen in prostate cancer. They are non-PET avid and show up better with CT scan/bone scan and MRI without contrast. Go figure. They are both lytic and sclerotic.
Thank you, thank you, for your information.
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I am currently dealing with pancytopenia now. ILC seems to go to marrow a little more frequently. I am needing transfusions and I recently started in Procrit injections. We are talking about injections to support platelets and white counts, as well. I have been offered a combo chemo that would possibly break up the cancer in my marrow enough to allow it to function a bit. I've read studies where this works sometimes. I'm trying to decide now if I want to go this route. It can be tough because with the already low counts, they will be hit even harder by the chemo requiring huge support.
I'm interested to hear what is being offered to you to combat this. -
Hi, Romans!
I know you from the bone mets thread. I started Xeloda 2,000mg twice daily, on 7 days then off 7 days. Did one week and wow! Platelets went from 21,000 to 45,000 and WBCs went up to 4 from 1. Which ONC believes may be paradoxical or not. It did nothing for my hemoglobin which tanked, can be from cancer in marrow, combo of Xeloda & cancer? I'm a conundrum. Apparently my entire sacrum /pelvis is all bone mets and marrow mets. I'm a nurse practitioner and know that about 40/50% of blood components are made by the red marrow of the sacrum/pelvis. They tried 3 different times to get marrow aspirated with and without CT guidance with multiple attempts each session. All attempts came up,"dry taps" even my bone biopsy is useless, showed no cancer cells the result of sclerotic mets mor common with prostate mets! So, assumption is entire marrow of pelvis is replaced with either cancer or bad bone.
Sorry for being so wordy, it helps me review what is going on. So for now plan is: Xeloda (still get Xgeva every 28'days) with transfusions as needed. Usually every 4 weeks. At this time ONC doesn't think Procrit will help. He decided to go with Xeloda because, after a case conf with the ONC department at the cancer center, and consults with the clinical pharmacist, they thought I would have a faster response w/o a scary drop In HgB and platelets w/ Madame X. They were thinking IV Taxol. They also ruled out Ibrance/faslodex because the clinical ONC pharmacist thought it would take too long to reap benefit (2-4 months).
I have MRI of head tomorrow and 2 units of PRBCs transfusion. Hope your counts climb!
Will keep you posted.
Regards, Beth
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Hi. Beth, I am glad to hear about the xeloda's success for you. I had such problems with side effects, I could not continue. It was very unfortunate. Tried Gemzar, but it didn't work at all. The cancer became much worse. But the onc didn't know it, until 4 months too late. I was given cmf for a 3 week cycle, but he stopped it when the report from foundation medicine one came back, showing that I had gene mutations that would respond to ibrance. So started ibrance, but we couldn't dig up a time frame when it would start working. You are the first person to know this information.
Unfortunately, time isn't on my side. My liver developed ascites and I needed a pleur-x drain placed. Albumin level dropped. Onc wouldn't listen and insisted to stay on ibrance until today.
My liver is huge! Swollen and rock hard across my belly. I lost 9 pounds in a week.
Oh, what price we pay to gamble unless we are in the hands of an expert clinician or research academic. We hope that the choices are make will offer a good balance between giving us a quality of life vs treating the cancer.
Maybe, just maybe... I should have started Adriamycin at the beginning of November, instead of doing ibrance. Then, maybe things would be better under control to try something new....
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OMG Bestbird, this is just what I need. I also have pancytopenia. Thank you!
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Hi, Whildchild. How are you doing now? I hope your situation has improved. It's been a while since I first posted. I needed to get through the holidays and we're in the midst of renovating a newly purchased home and trying to get ready to move. Not a good idea now, but we were committed to move before my MBC diagnosis (initial metastasis directly to bone marrow).
I started on Abraxane and took it for about 4 months until it stopped working. I just started Xeloda this month, 2000 mg daily, one week on and one week off. Completed my second "on" week 2 days ago and am still nauseated despite being off. I'm wondering about what side effects you had that caused you to stop Xeloda? I was really hoping that this would work for me since this metastasis is Her-2 negative, so not from my HER-2 cancer, and it is only very weakly estrogenic (I also had a HR positive cancer) so the hormone route is not a good option either.
I'd love any advise from the few of us with bone marrow mets.
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Thanks for responding, Bon. Sounds as though you're doing fairly well if your bone marrow involvement began 7 years ago ( although that's a relative measure I'm sure, given your femoral necrosis and bone pain).
I don't know what BNBA is?
I have been able to avoid transfusions since late November. I had my first one when I was so dizzy and fatigued that I could hardlly stand. I'm not certain what the alternative would have been to Chemo and transfusions. Chemo seemed to be my only option, since the BM biopsy was PR-, only weakly ER+(so no anti-estrogen meds) and Her2- (so no Herceptin or Taxol either). The problem, then, is that the BM mets decimate my blood cells and the chemo does as well. It's a challenge trying to take enough chemo to keep the cancer cells from taking over the BM, but not so much that my blood counts tank. Any other possibilities I'm not aware of?
I hope you continue to manage, even, if seems, pwithout treatment..
Judy
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I couldn't find this link for weeks!
Whildchild, are you able to get a second opinion? I haven't seen a post for a while from you. Hope all is well.
My hemoglobin gets dangerously low - once it actually got to the low 6's and I was having a lot of palpitations and shortness of breath. You can't live without oxygen getting to your organs and cells so I had to start transfusions. I did require a transfusion of platelets because I has having some nasty nosebleeds. Since the platelets dropped way back in October when the bone mets were first being considered I haven't required any more platelet transfusions. I didn't require a transfusion this month either! first time in 6 months.
something interesting, some insurance companies won't pay for transfusions unless your hemoglobin is below 9 and you are synptomatic: SOB, unrelenting fatigue, palpitations etc. Had to laugh when my NP told me that because my hemoglobin has been in the low 7's to low 6's every time I received a transfusion.
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