A real-life case history
Back in the Fall of 2004, my husband PC and the rest of the family set out for a long hike. It was a sunny and wonderful day. To make a long story short, PC was doing a bit of rough-housing with our dog and took a bad tumble, falling full length on the rough ground. Fortunately he was wearing heavy duty denim jeans and there was no broken skin. But after we got home we saw he had an impressive bruise down the side of his leg, from mid-thigh to his calf. The bruise lasted a couple of days and faded away and we thought no more about it.
Along came the week-end. (Why do medical emergencies always happen over a weekend?) Saturday night, over a matter of just a couple of hours his knee and leg became swollen and very tender and painful to the touch. He had streaks of bright red running down his leg. Very strange, I had never seen anything like it. Frantic searching on PubMed suggested it might be deep vein thrombosis, a blood clot buried deep somewhere in the veins of his leg. But I thought DVT was generally a risk in obese and or sedentary couch potatoes? PC was anything but sedentary, he was a slender and very fit guy who hiked and ran many miles each week.
Nevertheless, I was worried and sent an email to my favorite CLL specialist, Dr. Timothy Call of Mayo. I heard back within hours (thank you Tim for that bit of long distance and pro-bono weekend patient care!). Yes, he said, it was most likely DVT (deep vein thrombosis) and I had better get PC to the emergency room right away rather than wait until Monday morning to see his regular doctor. Sure enough, ultrasound confirmed a clot in his popliteal vein, just behind his knee. Not much blood was getting past the blockage and all that backed up blood was causing his leg to swell painfully. The picture at the bottom of this article is not an exaggeration – that is what PC’s leg looked like, if you also throw in a few bright red streaks running down the length of his leg.
Left untreated, a possible serious complication of clots such as this is that they can break away and travel in the blood stream to other places such as the lungs, only to get stuck there again. A blood clot in the lungs is called a pulmonary embolism. Less likely, the clot can get all the way to the brain, in which case it can cause a stroke. This is the reason for considering DVT a medical emergency. I am told that untreated DVTs in the legs carry a 3% chance of death due to lung embolism. It would have been ironic to lose my husband four years earlier to a simple fall while playing tag with the dog, while we were so focused and hell-bent on fighting his CLL. Those four years were so precious, I would not trade them for anything in the world.
So, why am I writing about this purely random happenstance, a guy playing with his dog and tripping over his own two large feet? How is any of this of direct relevance to CLL patients? Because I learned there is a connection between increased risk of DVT and CLL, as well as many of the drugs used in treatment of CLL patients add to that risk. As a CLL patient your chances of getting a DVT are significantly higher under some circumstances and it is important you learn about them. Another case of what you don’t know can kill you faster than you can say deep vein thrombosis.
What causes blood clot formation?
Generally, there are several reasons why clots may form. I will limit myself to the risk factors that you may come across as a card carrying member of the CLL club.
- If you are the proverbial couch potato, or you are a frequent flyer sitting for hours on end in a cramped economy seat immobilized by extra large individuals on either side, you are at increased risk of getting a blood clot in your legs. Blood flows slowly when you are not moving around and that gives it a chance to congeal and form a clot.
- Other circumstances where immobilization cannot be avoided are hospitalization after surgery, having your leg in a cast etc.
- Another risk factor for developing blood clots is physical trauma to the walls of a blood vessel, as in a deep bruise. General inflammation of blood vessels increases risk of blood clots.
- Smoking is a definite risk factor for blood clots. Don’t tell me you are surprised. Smoking is a high risk factor for every bad thing, take my word for it. Would you quit if I told you it makes you go bald? Impotent? Just kidding, I have not seen such studies yet, but one can always hope. Some guys seem to be more worried about going bald than lung cancer or strokes.
- Did you know that most cancers carry the penalty of increased risk of DVT? I have more to say about this with particular reference to CLL further down in this review; ditto for several drugs popular with our guys.
- Increased tendency of the blood to clot due to very high platelet counts is not usually a problem we have to worry about – most of our guys have too few platelets on account of CLL. Let me also be clear and point out that increased white blood count in the ranges seen in CLL patients does not cause thickening of blood.
- There is a very long list of various drugs that increase risk of blood clots. We discuss a couple of them below.
Some of these risk factors are shown below in the diagram. “Venous stasis” means slow moving blood flow, say due to sitting in cramped airline seats. “Vascular injury” is self evident, as in a deep bruise or inflammation of some sort. “Hypercoagulability” is thick and viscous blood, possibly due to specific drugs you may be taking. Any one of these is no big deal. But combine them together and you get a perfect storm. PC had vascular injury, hypercoagulability due to IVIG therapy and cancer (CLL) – three risk factors that put him over the top for DVT risk.
Cancer and risk of blood clot formation
I was not aware that having active cancer – of any kind – increased risk of thromboembolism (a bit of jargon, means the same thing as blood clots forming and gumming up the works). The very recent article below from Mayo Clinic looked at roughly 1,600 of their patients with blood clots over a period of 17 years (1984 – 2000). After accounting for all other known risk factors, they concluded cancer was an independent risk factor for blood clot formation in the arms, abdomen, legs etc. You are almost twice as likely to have a leg blood clot if you have cancer, compared to the general population.
Mayo Clin Proc. 2011 Jan;86(1):25-30.
The association of active cancer with venous thromboembolism location: a population-based study.
Tafur AJ, Kalsi H, Wysokinski WE, McBane RD, Ashrani AA, Marks RS, Crusan DJ, Petterson TM, Bailey KR, Heit JA.
Division of Hematology, Mayo Clinic, 200 First St SW, Rochester, MN 55905.
Abstract
OBJECTIVE: To test active cancer for an association with venous thromboembolism (VTE) location.
PATIENTS AND METHODS: Using the resources of the Rochester Epidemiology Project, we identified all Olmsted County, MN, residents with incident VTE during the 35-year period 1966-2000 (N=3385). We restricted analyses to residents with objectively diagnosed VTE during the 17-year period from January 1, 1984, to December 31, 2000 (N=1599). For each patient, we reviewed the complete medical records in the community for patient age, gender, and most recent body mass index at VTE onset; VTE event type and location; and previously identified independent VTE risk factors (ie, surgery, hospitalization for acute medical illness, active cancer, leg paresis, superficial venous thrombosis, and varicose veins). Using logistic regression we tested active cancer for an association with each of 4 symptomatic VTE locations (arm or intra-abdominal deep venous thrombosis [DVT], intra-abdominal DVT, pulmonary embolism, and bilateral leg DVT), adjusted for age, gender, body mass index, and other VTE risk factors.
RESULTS: In multivariate analyses, active cancer was independently associated with arm or intra-abdominal DVT (odds ratio [OR], 1.76; P=.01), intra-abdominal DVT (OR, 2.22; P=.004), and bilateral leg DVT (OR, 2.09; P=.02), but not pulmonary embolism (OR, 0.93).
CONCLUSION: Active cancer is associated with VTE location. Location of VTE may be useful in decision making regarding cancer screening.
PMID: 21193652
How about CLL? Does that increase risk?
I knew sort of vaguely that cancer increased the risk of blood clots. But I did not know that there was any special connection between CLL and blood clots. The latest abstract below puts in concrete terms:
Leuk Res. 2010 Dec 12. [Epub ahead of print]
Chronic lymphocytic leukaemia is a risk factor for venous thromboembolism.
Whittle AM, Allsup DJ, Bailey JR.
Department of Haematology, Queens Oncology Centre, Castle Hill Hospital, Cottingham, East Yorkshire HU16 5JQ, UK.
Abstract
Venous thromboembolism (VTE) is a major cause of morbidity and mortality in cancer patients. The literature is sparse on the incidence in the most common lymphoid malignancy, chronic lymphocytic leukaemia (CLL). We calculated the incidence rates for VTE in an unselected UK CLL clinic population at 1.45% per patient year. This represents a tenfold increase over previously published estimates of incidence in the general population and a twofold increase over that of the local hospital inpatient population. In our cohort, the risk of VTE was related to stage C disease. Clinicians should be aware that CLL patients are at risk of VTE.
PMID: 21156322
Ten times higher risk of VTE (another three letter acronym, stands for venous thromboembolism or if you prefer plain English, blood clots in the veins) for CLL patients than in the general population – especially if you are Stage C disease. Did you know that?
Role of common CLL drugs in blood clots
Even patients who are leery of signing up for chemotherapy are willing to consider therapeutic drugs that help them fight CLL related anemia and infections. IVIG (intravenous immunoglobulin infusions) have been around for awhile. These are immunoglobulin (Ig) molecules collected painstakingly (and very expensively) from many gallons of blood donated by generous volunteers. Since CLL patients invariably fall victim to downward spiral of Ig counts (IgG counts are the ones to focus on), getting IVIG therapy is one way of improving this situation.
Immunoglobulins play a very important role in our immune defenses and CLL is one of a handful of diseases for which IVIG therapy has been formally approved by the FDA. Most physicians do not like to prescribe it and most insurance companies sure as heck do not like to pay for it – it is expensive and often in chronic short supply – but with persistence it is possible to get IVIG therapy prescribed. Remember, in life you get what you are able to negotiate for yourself.
Immunoglobulin products have become a whole lot safer in recent years, with very strict controls over how they are manufactured and supplied. Blood products always carry a non-zero risk of unanticipated contaminations and cross infections. That risk has diminished greatly over the years. As for allergic responses to IVIG therapy, as long as the drug is administered slowly and proper precautions are taken, most people are able to handle the infusion quite well.
But did you know that IVIG therapy “thickens blood” and high doses of IVIG increase your risk of blood clots significantly? As it turned out, that little fact is what saved my husband back in 2004. I came across this little abstract below as I frantically searched PubMed database on that memorable weekend. PC had just had his routine IVIG therapy and I wondered if it had anything to do with anything. This is what popped up in my search. Who knew. And the author was no one other than my friend Tim Call, who promptly responded to my frantic email confirming the likelihood of DVT as a potential diagnosis, requiring an immediate trip to the emergency room.
Mayo Clin Proc. 2000 Jan;75(1):83-5.
Deep venous thrombosis of the arm after intravenous immunoglobulin infusion: case report and literature review of intravenous immunoglobulin-related thrombotic complications.
Go RS, Call TG.
Division of Hematology and Internal Medicine, Mayo Clinic Rochester, Minn 55905, USA.
Abstract
Thrombosis resulting from intravenous immunoglobulin infusion is a relatively unknown complication. We describe a patient who developed deep venous thrombosis of her left arm shortly after intravenous immunoglobulin administration. In addition, we review the thrombotic incidences reported in the literature and the possible association with hepatic veno-occlusive disease after bone marrow transplantation. Measures that can potentially prevent this complication are discussed.
PMID: 10630762
You can also read a lot more about blood clot issues after IVIG therapy in this Medscape article (you can read the whole article for free, but you may have to login or register to become a member – no charge).
Thrombotic Complications After Intravenous Immunoglobulin Therapy in Two Patients
Geoffrey G. Emerson, M.D., Ph.D., Christopher N. Herndon, B.S., Antoine G. Sreih, M.D.
Conclusion
Intravenous immunoglobulin therapy may be complicated by the development of thrombosis in both arterial and venous circulation. The mechanism that underlies this adverse effect is unknown but may involve alterations in blood viscosity. We recommend caution when treating patients with IVIg, particularly if they have risk factors for thrombosis or if they are obese. When treatment with IVIg is essential, close follow-up should continue for at least 2 weeks after completion of therapy.
Growth Factor drugs
Another popular pick-me-up drug with CLL patients is erythropoietin. “Epo” drugs such as “Aranesp”, “Epogen” and “Procrit” are popular because these growth factors are often able to increase red blood cell counts and hemoglobin levels in anemic patients. Until very recently, manufacturers were even allowed to bombard us with direct-to-consumers advertisement of these “miracle” drugs on TV. I have never been a real fan of these growth factors, please see our earlier articles “Dark side of Epo” and “Getting darker”.
But did you know that one of the risks of treatment with these growth factors is increased risk of blood clots? Below is an abstract in venerable JAMA, an exhaustive review of all clinical information available in the Cochrane database. This is heavy duty stuff folks, as credible as it gets.
JAMA. 2008 Feb 27;299(8):914-24.
Venous thromboembolism and mortality associated with recombinant erythropoietin and darbepoetin administration for the treatment of cancer-associated anemia.
Bennett CL, Silver SM, Djulbegovic B, Samaras AT, Blau CA, Gleason KJ, Barnato SE, Elverman KM, Courtney DM, McKoy JM, Edwards BJ, Tigue CC, Raisch DW, Yarnold PR, Dorr DA, Kuzel TM, Tallman MS, Trifilio SM, West DP, Lai SY, Henke M.
VA Chicago Healthcare System, Department of Medicine, Northwestern University Feinberg School of Medicine, and Robert H. Lurie Comprehensive Cancer Center, Northwestern University, Chicago, Illinois 60611, USA. cbenne@northwestern.edu
Abstract
CONTEXT: The erythropoiesis-stimulating agents (ESAs) erythropoietin and darbepoetin are licensed to treat chemotherapy-associated anemia in patients with nonmyeloid malignancies. Although systematic overviews of trials have identified venous thromboembolism (VTE) risks, none have identified mortality risks with ESAs.
OBJECTIVE: To evaluate VTE and mortality rates associated with ESA administration for the treatment of anemia among patients with cancer.
DATA SOURCES: A published overview from the Cochrane Collaboration (search dates: January 1, 1985-April 1, 2005) and MEDLINE and EMBASE databases (key words: clinical trial, erythropoietin, darbepoetin, and oncology), the public Web site of the US Food and Drug Administration and ESA manufacturers, and safety advisories (search dates: April 1, 2005-January 17, 2008).
STUDY SELECTION: Phase 3 trials comparing ESAs with placebo or standard of care for the treatment of anemia among patients with cancer.
DATA EXTRACTION: Mortality rates, VTE rates, and 95% confidence intervals (CIs) were extracted by 3 reviewers from 51 clinical trials with 13 611 patients that included survival information and 38 clinical trials with 8172 patients that included information on VTE.
DATA SYNTHESIS: Patients with cancer who received ESAs had increased VTE risks (334 VTE events among 4610 patients treated with ESA vs 173 VTE events among 3562 control patients; 7.5% vs 4.9%; relative risk, 1.57; 95% CI, 1.31-1.87) and increased mortality risks (hazard ratio, 1.10; 95% CI, 1.01-1.20).
CONCLUSIONS: Erythropoiesis-stimulating agent administration to patients with cancer is associated with increased risks of VTE and mortality. Our findings, in conjunction with basic science studies on erythropoietin and erythropoietin receptors in solid cancers, raise concern about the safety of ESA administration to patients with cancer.
PMID: 18314434
Revlimid (lenalidomide)
The list of chemotherapy drugs that can increase risk of blood clots is too large and frankly beyond my ability to summarize in this article. But one particular drug that deserves special mention – Revlimid (lenalidomide).
Risk of blood clots in multiple myeloma patients treated with Revlimid has been well documented. The manufacturer’s website prominently displays deep vein thrombosis and pulmonary embolism as potential risk factors
DEEP VEIN THROMBOSIS AND PULMONARY EMBOLISM
REVLIMID has demonstrated a significantly increased risk of deep vein thrombosis (DVT) and pulmonary embolism (PE) in patients with MM who were treated with REVLIMID and dexamethasone therapy. Patients and physicians are advised to be observant for the signs and symptoms of thromboembolism. Patients should be instructed to seek medical care if they develop symptoms such as shortness of breath, chest pain, or arm or leg swelling. It is not known whether prophylactic anticoagulation or antiplatelet therapy prescribed in conjunction with REVLIMID may lessen the potential for venous thromboembolic events. The decision to take prophylactic measures should be done carefully after an assessment of an individual patient’s underlying risk factors.
Not as much is known about potential for blood clots in CLL patients treated with Revlimid. We are Johnny-come-lately to the Revlimid party. MM folks were there long before us. But just about every detailed clinical trial protocol I have seen (but maybe not in the cartoon versions you guys get along with the consent forms) mentions this risk and either mandates concurrent “Coumadin” therapy (Coumadin is used to thin blood, reduce the risk of blood clots) or warns investigators to keep a sharp eye out for problems along these lines and to consider initiating blood thinning regimens immediately if they suspect blood clots. Most protocols require that patients be asked about their prior history of any blood clots as well as other family history of similar problems. A couple of trials have inclusion criteria that make sure they only recruit people who are not contra-indicated for blood thinning therapy, should it become necessary down the road.
Editorial
All of this caution about use of Revlimid and risk of blood clots is prudent, the right way to do things in a manner that protects patients. The problem is that Revlimid is available for use outside of well conducted clinical trials. Who is setting the guidelines for safety of patients being treated with this drug outside of well designed clinical trials? Where are clearly spelled out “Best Practices”?
I use the term “strip-mall oncologist” as a snarky reference to less than well informed oncologists. Many of our patients have no choice but to depend on their not-so-well-informed services. How many of them know about the potential risk of blood clots in patients undergoing Revlimid therapy? How many of them read the clearly spelled out risk factors for this drug on the manufacturer’s website, before one of their patients has a for-real DVT or even more dangerous, a heart attack or stroke?
By the way, dexamethasone and other corticosteroid drugs (prednisone, methylprednisolone) are sometimes used to tame down the “tumor flare” reaction associated with Revlimid therapy. Unfortunately, steroid drugs such as these also add to the risk of blood clots.
So, here you are, teensy bit of a couch potato in spite of your best resolutions, with a personal and/or family history of blood clots. You used to smoke in your distant youth but have succeeded in kicking the habit in recent years. Well, let’s be honest, we are all friends here – almost kicked the habit.
You are no stranger to steroid drugs; maybe you also needed a few shots of Epo to take the edge off the anemia you had been struggling with in the past. You have pretty late stage CLL and you are undergoing Revlimid therapy under the supervision of your local oncologist. Suddenly you start experiencing TIA – transient ischemic attacks – mini strokes in layperson language. TIA is kid stuff that often leads to the full-fledged variety of stroke that can leave you drooling out of the corner of your mouth and confined to your bed for the rest of your life.
And your oncologist says oops, perhaps you should be on blood thinners and maybe we should have been monitoring your PTT (time it takes for blood to clot) on a regular basis. Oops indeed.
I repeat once again, what you don’t know can hurt you. What your oncologist does not know can kill you. If at all possible, try to get experienced medical help, especially if you decide to take a path less traveled and use less well understood drugs and/or their combinations. I realize you may not always have that choice with regard to where you get your medical care. The next best thing is for you, yourself, to be well informed about things that can go bump in the night. That is what we try to do here, teach you things you really need to know, so that you can ask your doctor about them ahead of time, make sure you have covered all your bets as best as you can.
24 comments on "Blood Clots"
Thanks for the warning Chaya. If PC could get this, with all his working out and exercise, the rest of us need to really take note and sit up. How exactly did his having a fall, precipitate a clot?
One of the risk factors we discussed above is “vascular injury” – damage to the walls of the blood vessels due to deep bruising, as well as the inflammation at the site of the damage. A minor and superficial scrape will not cause this kind of damage to the blood vessels buried deep inside. But a heavy-duty bruise will do it.
The last paragraph of Chaya’s article mentions the importance of experienced medical care. Because CLL is a rare disease with many variations, finding the right medical care can be challenging. However, the Internet is a powerful tool if you use it wisely. Websites of the CLL Research Consortium, the American Medical Association, American College of Mohs Surgeons, etc. can be helpful in finding medical specialists.
Thanks primarily to a newspaper survey of Central Ohio phyicians (posted on-line), I was able to find an excellent surgeon that does over 300 prostate surgeries per year!
“damage to blood vessels”….. while my clots were not DVT, they were still a threat, and should not have happened. Mine were caused by a badly placed IV in my ‘elbow’, even tho the nurse who placed the line wes asked not to use that spot, and the surgeon knew of my cll. He had done the node biopsy that ocnfirmed my cll some years before. The nurse was unphased after her question about breast cancer was answered with a no but I do have lymphoma and enlarged nodes in that area.
A four hour wait for surgery with a painful line did not help, but all requests to have the line moved were ignored. The surgeon tried to reassure me that clots were not a problem since my plateletes were low (not true).
I spent the entire fourth of july weekend (murphy’s law) in the ER on IV antibiotics and heparin for two clots. One 7+ mm and one over 3mm. The arm became purple, and red and a few other colors, and swollen beyond recognition. Not to mention painful.
I too was helped by a Mayo doctor, Dr. Clive Zent who kindly emailed me and told me that low plateletes were no assurance of no clots especially in cll. IN fact that CLL predisposed us for clots. I have had NO cll treatments to date.
While this was not a DVT, it was a clotting episode I would not wish on anyone. Any clot can be dangerous.
Beth Fillman
It is hard to underestimate the importance of a site that puts things in persepctive from a patient 1st outlook instead of the latesr drug someone can shill for big pharma or lab finding they can spin into more grant money.
Wow! Unbelievably timely–my two Mayo Scottsdale docs have both suggested IVIG therapy combined with possible treatment with either Revlimid or Rituxan. Not one mentioned the possibility of DVT.
I have long-term atrial fibrillation and took Coumadin for years, only allowed to discontinue it last year when I hemorrhaged to the point I needed two units of blood and risked a heart attack from critically low hematocrit. Even then I was the one who pushed to end this inherently dangerous therapy, essentially saying the obvious increased risk was now unacceptable. Additionally, I had early on purchased a device which enabled me to measure my INR and avoid dangerous spikes, but STILL nearly bled to death.
RE Coumadin, I had read that the risk curves between hemorrhagic stroke and clotting stroke crossed at about age 78. Nonetheless, not one cardiologist was willing to take me off the drug. I was well past that marker when I had that catastrophic bleed, and had often asked them to no avail to reconsider the validity of continuing the therapy as I aged into my 80s. Measuring and evaluating risk/benefit is not one of their specialties, perhaps because of malpractice concerns. I suspect the same may be true of oncologists.
CAVU
Dear Chaya,
your article regarding blood clots is very timely for me as I have an appointment with my oncologist next week concerning the possibility of beginning IVIG infusions to strengthen my immune function. Though it is expensive I find that with my AARP Medicare Complete coverage under Part B my maximum out of pocket cost per year is $3950 if it is administered in a network hospital. I will have a copy of this article with me for the appointment. Thank you so much.
Dale Landis
Chaya,
I thought this would be of interest. I was dx with Central Retinal Vein Occlusion with mild macular edema and reduction in vison.
The treatment for this condition is Avistin, a shot in eye every month.
Hopefully, this will keep the edema down and help save the vision. The blood clot cannot be disolved.
The onc/hem say that it is not CLL related. The retina specialist
believes my leukemia may be a risk factor.
In case anyone has a blur of vision, an eye(with dilation)exam would be
prudent from my experience.
Thank you for this fine article as always.
Jean
Chaya,
Thank you for a very informative update.
Be well,
Monique
Interesting article. My husband had a DVT diagnosed over 3 years ago, for no obvious reason. He was put on Lovenox for 5 days and started coumedin immediately. Subsequent blood work revealed stage 1 CLL. He was on coumedin for over a year with his primary care physician, his oncologist, and a consulting hemotologist trying to determine if he needed to continue on coumedin. Even when asked point blank “is the blood clot related to CLL” we were told by both the oncologist and hemotologist that while DVT is related to all types of cancers, it is not necessarily caused by CLL. This article confirms my belief that there IS a connection. Incidentally, these doctors are at a major cancer treatment and reserach center in the Pacific Northwest, definitely not strip-mall doctors. (I am not putting down the doctors here . . . they are GREAT and we appreciate them.)
After about a year, my husband was taken off coumedin and had no additional DVT for about 2 years, but a few weeks before he was scheduled to start FCR treatment another DVT developed. He started on the five days of Lovenox and coumedin, only to be informed that coumedin is ineffective during FCR treatment so he is now on a daily Lovenox injection until FCR treatment ends. Not fun, but what are the alternatives right now?
Looking ahead, he was told that with his history of DVT, that he will be on coumedin for the rest of his life (he’s 63). It makes me wonder if that will be necessary when he becomes one of the 72% who obtains complete remission and the blood counts are back to normal.
My husband just completed round two of the FCR treatment. When he started, his WBC was at 129 THOU and platelets at 81 THOU. After just ONE round of FCR treatment, this WBC was at 5.98 THOU and platelets at 129 THOU. After effects of treatment aren’t fun, but the results are amazing and encouraging. Can’t ask for much better than that!!
We feel so fortunate to be so close to this great research and treatment facility and for all the volunteers who helped determine that FCR is so effective. Also, a big thanks to you, Cheya, for this website. All your information on the Aug. post “Everything you wanted to know about FCR” was right on with what we’re experiencing. It made going into this treatment a bit less intimidating. Also, you’re right on about CLL patients needing to be diligent in watching for skin cancers. My husband has had so many skin cancers removed that we’ve lost count, and many of those were well before he was diagnosed with CLL.
Kris
Kris
Hello, My husband (59)spent 6 days in the hospital in December for pulmonary embolism. December marked his 3rd chemo cycle of FCR. The FCR treatment also includes dexamethasone and a shot of Nulasta 24 hours after the last day. His symptoms were shortness of breath and a fever of 102. We went to our local hospital because the instructions on the chemo paperwork said to go to the nearest hospital not to wait the 1.5 hour driving time to get to the VA in SLC, UT. They did x-rays and blood tests which really didn’t show anything so we were sent home with a prescription of broad spectrum antibiotic. The next day we decided to go down to the SLC VA hospital as he was still very sick. The VA was very thorough and a CAT scan and found the embolisms dispersed throughout his lungs. The blood clots have caused his heart to go into atrial fibrillation which they hope will go away as the embolisms resolve. They assume the fever was due to the blood clots because no infection was found with extensive cultures and tests. Some of my thoughts and questions are: as Chaya’s article says low platelets don’t mean you can’t get blood clots (his were 30 at the time). I wonder if the Nulasta could have contributed even though the literature doesn’t say as much? I even thought of the fact that on the first day of each chemo cycle he is in the chair for usually 7-8 hours. That is a long time to sit down, on his Jan cycle he got up and stretched more. His oncologist had the admitting Doctors take him off Heprin and put him on Loveinox because he said Heprin is more likely to cause neutropenia. Do they ever use prophylaxis like aspirin for blood clot preventions? All emergency rooms are not created equal we are very glad that we went down to the Va. Thank you Chaya for this article
Chaya,
I noticed a site called BMJ.com which has good info ……are you familiar with it? ….and is it of help? I think one needs to subscribe for updated info…..also it could only be for doctors.
I, too, am currently undergoing treatments with FR for relapsed CLL (1st 6 month FR started in 2008 May). And get steroid dexamethasone and am finding that my body is extremely sensitive to steroids. I’m hoping I can get the dosage lowered and will stay alert for potential risks, for sure. Thanks Chaya for helping all of us stay alert to side effects.
As an aside, my entire arm looked like PC’s leg when I got my flu shot a few months ago. Reaction though – and not DVT.
Thanks again Chaya for a very timely and great article. I was diagnosed with CLL in 1999 and have had many of the related problems described. I am very fortunate to have the low volitility grade of CLL with the genetic oddity that keeps me from having further problems with CLL. I have, however, had prostate cancer, melanoma and just last year was diagnosed with DVT. As an aside, I am just recovering from quadruple bypass heart surgery, Where the Dr. gave me steroids to increase my platelet count. The count never got above 55K, but he had to do the surgery anyway. As a result several of the bypasses didn’t take and he had to go in again to redo it. It was a long involved surgery, but I am recovering well now. Thanks again, John
Chaya,
My father died years ago. He had a post-op pulmonary embolus after surgery.
Always on my mind. In fact, I insist on TED hose when I had surgery.
Thanks for a very interesting article.
Rita
Another great article. Thanks.
I’ve been on monthly IVIG for three years without problems and see improvement in my general health. Following each three hour treatment the nurse always tells me to drink lots of fluids for several days – I’ll take that advice more seriously now.
John
High platelets have been a worry for me since my splenectomy last July. At their highest after the splenectomy failed (and AIHA returned) they were 493!!! Latest readings in December were 389 – still way too high for peace of mind. Thanks for the timely reminder Chaya and happy new year too.
Sylvie
John B:
I do not believe drinking lots of fluids has any effect on blood viscosity or risk of clot formation. I think the nurse is telling you to stay well hydrated – drink fluids – to give your kidneys a chance to get rid of all the waste products in an easy and dilute manner.
Sylviebee:
Your platelet count is not high enough to worry about. The strange thing is (someone already commented on this) that low platelet counts do not mean you have reduced risk of blood clots, and higher platelet counts (like yours) do not mean you have increased risk of DVT.
The process of blood clot formation is a complex one; one of the major driving forces is inflammation. That is why inflammation of the heart or brain tissue is so dangerous, it encourages formation of blood clots – which leads to heart attacks and strokes, respectively.
AzzyJanuary 15th, 2011 at 11:25 am It is hard to underestimate the importance of a site that puts things in persepctive from a patient 1st outlook instead of the latesr drug someone can shill for big pharma or lab finding they can spin into more grant money.
WOOPS!! Sorry, I meant overestimate of course, despite it being 11am, it was 1st thing after waking up.
Thanks for a very informative article.
Because I am symptom-free, I might not think of the CLL related to a problem. I sent the information to my husband, in case he is functioning better than I am at a certain time.
anna
Thank you Chaya for this most informative article. I started on IVIG therapy when my Igg level continued to fall and the number of infections began to rise. My first infusion was in Dec 2010. I experienced cramps in both of my calves for about 5-6 days after the infusion. The cramps subsided and I had a second infusion on Jan 14. A day or two later, I again experienced calf cramps which have now become general leg aches. There is no swelling or redness in my legs. My local hematologist’s nurse told me that this was a common side effect of IVIG. I am hesitant to have a third infusion. Has anyone had a similar experience?
This is unhappy news for those who already have a history of DVTs and are newly diagnosed with CLL: talk about being doubly damned! One wonders how already having a years-long history of DVTs complicates the progress (or not) of CLL. If you weren’t already on warfarin for the rest of your life, you may be now.
Fortunately, long-term warfarin therapy is inexpensive, has minimal side effects (other than thinning hair for women; damn), and is well investigated; and there is always Lovenox to keep the clotting level acceptable until your body has enough warfarin in it (Coumadin) to reach the target INR level (that takes at least 7 days, usually). One hates self-administering belly shots of Lovenox, but there are worse things — like dying of a PE instead.
Hallo Chaya
Thank you for your updates. I am learning a lot (against my will sometimes).
Your “blood clot” article really gave me a good scare. I happened to be overseas after a long flight, looking at a red, swollen and real tender foot with two blue toes. I was in no position to really study your article at that time but what I saw was too close for comfort in spite of the fact that I did not seem to be a candidate (besides the long airplane ride). I did the best I could and did a lot of research after coming home again.
To make a long story short; my symptoms were similar to the blood clot ones, but mine seem somehow different and did not affect my leg and I did not have the pain. I researched the old inflammation problem again but that did not really satisfy me. Next on my list was gout but I know that my uric acid level is normal. Then I hit “pseudo gout” which has similar symptoms but is not triggered by uric acid crystals in the joint but formed from a salt, as you may know. It really rang true when I was reading the different articles.
You know what clinched it? It can apparently be caused by an intake of iron supplements! Yes, I was guilty! I am pretty sure I don’t have iron deficiency and/or anemia but have bouts of serious fatigue. I decided to take some iron supplements because I am low in red blood cells etc.
I took about 300mg/day (they are kept behind the counter here in Alberta and I wondered why, maybe now I know). Of course I dropped them immediately after studying the information and things have improved dramatically since then (together with a lot of walking). My foot is not back to normal, that could take a long time, if ever.
I don’t know if this is scientifically correct, it is Internet information combined with some speculation on my part (I did not even consult a doctor), but I just wanted to share this with you.
Regards, Abe
I am recouping from my third bout with Bilateral P.E. It’s how they found my CLL. I was in ICU for over a week and in the hospital for a total of two. They gave me a Tulip Filter for added protection but this last bout didn’t originate from my legs. It came from an unknown source. Upon further tests they found the CLL as well as multiple clotting factor disorders. ONC feels more worried about my clotting factor disorders than he does my CLL right now. Taking coumadin for life now as well as some damage done by the clots to my heart and lungs. It all started with a cough that was persistent.I thought it was remnants of my frequent bronchial infections that I suffered from. Lucky to be alive.
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