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        <title>Life with Lymphoma via MedWorm.com</title>
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        <lastBuildDate>Sat, 16 Aug 2008 14:44:35 +0100</lastBuildDate>
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            <title>My last lymphoma blog</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/finale/</link>
            <description>As I write this final piece, I want to leave you with some suggestions to live by if you have lymphoma.
Be proactive. You are in charge of your health. Your doctor is merely the vehicle to get you where you need to go. If he won’t agree to what you want, find a new mode of transportation.
Stay positive. No matter what kind of news you get or what you read, remember that no one can predict how long you will live with your disease.
Don’t read into statistics. Statistics are just statistics. Doctors’ prognoses are all based on median outcomes and there are simply too many variables at work to make accurate predictions.
Keep exercising. Your immune system needs all the help it can get and staying active will make it alert and stronger
Eat well. A balanced diet is important, but don’t deny yourself anything. Life is too short, even when you’re well. And don’t forget that red wine! It’s good for you.
Try integrative medicines. Now isn’t the time to be apprehensive; use everything at your disposal.
Be good to yourself. If there’s a trip you’ve wanted to take or something you’ve been saving to buy, don’t wait. You deserve it.
Keep hope alive.  Everything is possible.
One final reference. Over the past nine months I’ve cited what I think are the best sources for lymphoma. I neglected to mention one of the best sources I found when I was first diagnosed. If you have follicular lymphoma, you have to check out lymphomasurvival.com. The site is operated and maintained by Robert Miller, who is an 18-year survivor of follicular lymphoma. He has information and suggestions you will not find anywhere else. I highly recommend Robert’s site, and he has kindly waived the membership fee for anyone wanting to join. You won’t be disappointed.
Be well.
&amp;#8211;Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
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            <pubDate>Mon, 09 Jul 2007 17:17:41 +0100</pubDate>
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            <title>Time to pass the baton</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/time-to-pass-the-baton/</link>
            <description>When I first started writing this blog in March, I wasn’t sure how many I could write before I hit that proverbial wall. Well, I have hit the wall, and it has become a struggle to strive to write pieces that I feel are worthy of your attention.
In the case of lymphoma, I don’t feel there is enough new information that I can continue to report on, and I think you would be better served by someone who is actively going through the experience, or maybe living with someone who is. It would keep the perspective fresh and up-to-date.
As the saying goes, “when one door closes, another opens.” I have the opportunity to write a health column for a newspaper here in Southern California. I don’t have all the details yet, other than it will be in a question &amp;#038; answer format, which will give me the opportunity to branch out into other health issues. HealthTalk has informed me that when I have all the details, they will pass the information on to you, and for that I am grateful.
So if you would like to take over the lymphoma blog, please leave a comment here or e-mail blog@healthtalk.com
I will continue to write through the end of the month. If there is something you would like me to cover, I will try my best to do so. I hope these last nine months have been as enjoyable and informative for you as they have been for me.
Stay healthy, happy and positive.
-Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
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            <pubDate>Tue, 21 Nov 2006 18:58:35 +0100</pubDate>
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            <title>Lymphoma and cholesterol</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/lymphoma-and-cholesterol/</link>
            <description>Up until four years ago, my cholesterol was 152. It’s the one thing I have never been concerned about with my labs because high cholesterol doesn’t run in my family, and it has tested normal or even low all my adult life. This all changed after being treated for lymphoma although I never connected the two until now.
On November 7th, researchers at the Dana-Farber Cancer Institute in Boston suggested that survivors of Hodgkin’s lymphoma should be screened regularly for cholesterol due to their high risk of heart disease. &amp;#8220;People who survive Hodgkin&amp;#8217;s disease in their 20s are at three times the risk of heart disease later in life,&amp;#8221; said Aileen Chen, a senior resident in radiation oncology at the Dana-Farber. For more information on the complete study, go to the Dana-Farber Cancer Institute&amp;#8217;s Web site.
While this study refers to Hodgkin’s lymphoma, it seems only logical (to me) this would apply to non-Hodgkin’s as well. CHOP therapy involves the potentially heart-damaging drug, Adriamycin and this is just one drug in one protocol. There are many.
Apparently, radiation (as well as some chemo drugs), can damage some of the blood vessels, and arteries could be adversely affected by cholesterol levels.
My cholesterol gradually reached a high of 235 last May. When my oncologist called he told me my labs looked good but further remarked, “Is anyone following your cholesterol?” No sign of the lymphoma, but perhaps a heart attack waiting to happen.
I suppose this latest problem could be another coincidence like the prednisone affecting my eyes, but I don’t think so. Nothing has changed with my diet and I swim at least four times a week.
I will be having labs done this month and if my cholesterol is still high I will have to consider taking a prescription drug to lower it, which is not something I want to do.
Has anyone else experienced a spike in their cholesterol levels since being treated?
-Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
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            <pubDate>Tue, 14 Nov 2006 14:00:52 +0100</pubDate>
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            <title>A promising new drug for lymphoma and other blood cancers</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/a-promising-new-drug-for-lymphoma-and-other-blood-cancers/</link>
            <description>This seems to be good news for a possible future treatment for lymphoma.
On November 10, at the 24th Annual Chemotherapy Foundation Symposium, Dr. Susan O&amp;#8217;Brien of The University of Texas M. D. Anderson Cancer Center, announced Phase I clinical data on GX15-070, an agent produced by Gemin X Biotechnologies. Currently in Phase 2 clinical trials, GX15-070 is a small molecule specifically designed to inhibit members of the BCL-2 protein family, a known cancer target, thus restoring the natural cell death process.
&amp;#8220;In summary,&amp;#8221; O&amp;#8217;Brien said, &amp;#8220;GX15-070 has shown relevant biological and clinical activity as a single-agent in patients with refractory lymphomas and several types of leukemias, with primary side effects being infusion-related somnolence and euphoria, and no significant myelosuppression, immunosuppression, organ damage or cumulative toxicities. It is unusual to see such promising data this early in development of a first-in-class cancer drug, and I look forward to evaluating GX15-070 in Phase II trials.&amp;#8221;
GX15-070 is designed to restore apoptosis, the natural process of cell death that is often inhibited in cancer cells. In a wide range of cancers - lymph, breast, lung, prostate and colon - over-expression of Bcl-2 proteins has been found to inhibit cell death. GX15-070 is the first small molecule inhibitor of Bcl-2 proteins tested in clinical trials.
(Dr. O&amp;#8217;Brien has been a guest on several HealthTalk programs, including these:
The Latest in CLL Research and Redefining Remission: New Treatments, Better Tests.)
The GX15-070 (also called obatoclax) data were summarized in a presentation entitled, &amp;#8220;Obatoclax, A Small Molecule Pan Bcl-2 Family Inhibitor with Activity in Hematologic Malignancies.&amp;#8221; The summary included data from three Phase 1 clinical trials evaluating GX15-070 as a single-agent in patients with chronic lymphocytic leukemia (CLL), refractory solid tumors or lymphomas, myelodysplastic syndromes (MDS), or acute myelogenous leukemia (AML) using a variety of dosing schedules. Evidence that GC15-070 was clinically active included partial responses in chronic lymphocytic leukemia and follicular lymphomas and prolonged disease stabilization in largecell lymphoma; in some cases, patients were able to stop receiving both red blood cell and platelet transfusions.
These Phase I data have been presented at the 2005 American Society of Hematology (ASH) and 2006 American Society of Clinical Oncology (ASCO) annual meetings. Additional results from a Phase I study in hematological malignancies are expected to be presented at the 2006 LINK TO ASH American Society of Hematology (ASH) annual meeting in December.
Because of the encouraging safety data and evidence of the clinical and biological effectiveness noted in the Phase I studies, Gemin X is now evaluating GX15-070 in Phase II single-agent trials in myelofibrosis and Hodgkin&amp;#8217;s lymphoma, and plans to initiate additional trials before the end of the year.
For more information about the trials, go to geminx.com, or check on Clinicaltrials.gov.
-Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
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            <pubDate>Fri, 10 Nov 2006 20:53:55 +0100</pubDate>
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            <title>Serum sickness</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/serum-sickness/</link>
            <description>One of our readers recently commented (and thanks for sharing) that she experienced something called “serum sickness.” Since I’d never heard of this, I was curious as to what this is, and thought that perhaps others had experienced the same thing, but maybe didn’t have a name to put with it. This is what I found out. Serum sickness is a group of symptoms caused by a delayed immune response to certain medications or anti-serum (passive immunization with antibodies from an animal or another person).
Serum is the clear fluid portion of blood. It does not contain blood cells, but it does contain many proteins, including antibodies, which are formed as part of the immune response to protect against infection.
Anti-serum is a preparation of serum that has been removed from a person or animal that has already developed immunity to a particular microorganism. It contains antibodies against that microorganism.
An injection of anti-serum (passive immunization) may be used when a person has been exposed to a potentially dangerous microorganism against which the person has not been immunized. It provides immediate, but temporary, protection while the person develops a personal immune response against the toxin or microorganism. Examples include anti-serum for tetanus and rabies exposure.
Serum sickness is a hypersensitivity reaction similar to an allergy. The immune system misidentifies a protein in the antiserum as a potentially harmful substance (antigen), and it develops an immune response against the anti-serum.
Antibodies bind with the antiserum protein to create larger particles (immune complexes). The immune complexes are deposited in various tissues, causing inflammation and various other symptoms.
Because it takes time for the body to produce antibodies to a new antigen, symptoms do not develop until 7 to 21 days after initial exposure to the antiserum. Patients may develop symptoms in 1 to 3 days if they have previously been exposed to the offending agent.
Exposure to certain medications (particularly penicillin) can cause a similar process. Unlike other drug allergies, which occur very soon after receiving the medication for the second (or subsequent) time, serum sickness can develop 7 to 21 days after the first exposure to a medication. Blood products may also induce serum sickness.
Serum sickness is different from anaphylactic shock, which is an immediate reaction with more severe symptoms.
The comment made by this person is what I love about doing the blog because we all learn something. Please keep the comments coming. I can only write as long as I have things I think you will all want to read.
-Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
        <comments>http://www.medworm.com/rss/comments.php?id=809889</comments>
            <pubDate>Thu, 02 Nov 2006 17:31:10 +0100</pubDate>
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            <title>Rituxan protocols</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/rituxan-protocols/</link>
            <description>There have been a few questions raised about the use and administration of Rituxan (rituximab) and why there seems to be so many different protocols concerning maintenance Rituxan.
I talked to someone at the medical communications health desk at Genentech and asked why some people get infusions four times every six months for two years, while another receives an infusion every three months, and yet another goes monthly. I was told that it is up to the doctor to do whatever he thinks will be most beneficial for the patient. This is what is called “off-label use,” meaning it’s done without FDA approval.
I think this is a good thing, because everyone responds differently, so this gives the doctor the freedom to choose the best protocol based on the responses of individual patients.
Rituxan has been approved for four different protocols, all of which I’ve mentioned in my blogs. It was originally approved for relapsed indolent follicular B-cell NHL and has since been approved for three other usages in the last few years.
If anyone has a question about a drug you’re being treated with, call the company that makes it. They have representatives available to help you.
On another subject, if you live in the Orange County, California area, we are having the 2nd Annual Lymphomathon (5k) at Mason Park in Irvine this Saturday. Registration is at 9 a.m., and the walk begins at 10 a.m. You can sign up online (www.lymphoma.org) or at the park. Bring the dog and the kids. It would be nice to meet some of you.
-Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
        <comments>http://www.medworm.com/rss/comments.php?id=809890</comments>
            <pubDate>Tue, 31 Oct 2006 18:02:51 +0100</pubDate>
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            <title>Fat could hurt ability to ward off cancer</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/fat-could-hurt-ability-to-ward-off-cancer/</link>
            <description>I read an article by the Associated Press (AP) based on a report published in the journal of National Academy of Sciences. I thought the article was interesting, especially for those of us who have lymphoma because our B cells aren’t dying. When that happens, the process is known as apoptosis or cell death. Apoptosis is not happening for us.
Fatty tissue may decrease the body&amp;#8217;s ability to kill off cancer, says the report, which found making mice leaner through exercise or surgery may help them fight skin tumors.
The article stated that, &amp;#8220;Scientists have long known that people who are overweight are at increased risk of certain types of cancer. The question is why, and whether slimming down will lower that risk or do any good after a tumor forms.&amp;#8221;
In addition, according to the article, &amp;#8220;Rutgers University scientists took a closer look at that question using mice engineered to get skin cancer. Their report says fat cells may secrete substances that short-circuit one of the body&amp;#8217;s main anti-tumor defenses. When cells become genetically damaged – such as the DNA damage caused by the sun&amp;#8217;s ultraviolet rays – they&amp;#8217;re supposed to self-destruct. It&amp;#8217;s a process called apoptosis that helps clear out bad cells before they can grow into tumors.&amp;#8221;
The Rutgers&amp;#8217; team provided running wheels for of their lab mice, and the mice ran an estimated two to three miles a day, according to professor Allan Conney, director of cancer research in Rutgers&amp;#8217; pharmacy school.
After two weeks, the exercising mice were stronger than sedentary mice. More importantly, Conney found, the exercisers experienced higher levels of apoptosis – the self-destruction of bad cells. The same result was shown when researchers surgically removed fat from the mice. Though cancer experts said the study on mice isn&amp;#8217;t conclusive, they said the results are important.
&amp;#8220;This particular study certainly provides a biologic rationale…about why weight loss may be helpful,&amp;#8221; Dr. Len Lichtenfeld, chief medical officer for the American Cancer Society, told the AP.
This got my attention because I had skin cancer about 18 years ago. Has anyone else had skin cancer prior to getting lymphoma?
-Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
        <comments>http://www.medworm.com/rss/comments.php?id=809891</comments>
            <pubDate>Thu, 26 Oct 2006 17:12:14 +0100</pubDate>
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            <title>Genetic exams and cancer</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/genetic-exams-and-cancer/</link>
            <description>Genetic exams are not just for those who want to find out if they have some bad genes or a disease they might pass on to their offspring. Unfortunately, most of the time, genetic testing is performed only after something bad happens. The tests are done to see if one or both people carry the gene and what the chances are that it will happen again.
A team of researchers from Duke University just reported in the journal Nature Medicine that a test can be done on the tumors of cancer patients. The test is 80 percent accurate in predicting what drugs will be the most effective for patients and their particular type of cancer. This applies to not only single agents, but combinations of drugs that will work better in attacking the tumors.
The researchers said they used a &amp;#8220;gene chip&amp;#8221; made by Affymetrix as the basis of the test. They used tumor samples from patients with leukemia, lung, ovarian and breast cancers.
The goal is to personalize chemotherapy so that it will be more effective to the individual patient.
Those of us with lymphoma already have something like this in the form of Rituxan (rituximab), Bexxar (tositumomab), Zevalin (obritumomab) and the idiotypic vaccines. These aren’t chemotherapy drugs – they’re better – at least in my humble opinion. I think they are better because unlike the chemo drugs, which destroy everything in their path, these lymphoma drugs seek out specific cells to kill. There is some collateral damage, but nothing like with the chemo drugs.
Gene chips are designed to readily detect which genes are active in a particular cell, such as a tumor cell.   The technology is rather complex, but it involves adding messenger RNA extracted from the tumor cell and mixing it with the thousands of DNA bits that are loaded on the chip into miniature cells.  Some of the messenger RNA will bind to some of the DNA bits in particular cells. The ones that combine indicate which genes are active in the tumor cell. 
Lymphoma patients already have targeted therapies (Rituxan, Bexxar and Zevalun) as well as the idiotypic vaccines, which are specific (made from the patients own tumor cells) to the individual patient.
Now there is hope for millions with other cancers and lymphoma is leading the charge.
-Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
        <comments>http://www.medworm.com/rss/comments.php?id=809892</comments>
            <pubDate>Tue, 24 Oct 2006 20:57:42 +0100</pubDate>
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            <title>It’s lucky to have lymphoma?</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/it%e2%80%99s-lucky-to-have-lymphoma/</link>
            <description>When I first learned I had lymphoma, I thought I was a goner. Like most people, I often heard it said that once a cancer spreads to the lymph nodes, it’s time to pick out your burial plot. I figured that since I had a cancer of the lymphatic system, that I must have about 15 minutes to call my loved ones.
Fortunately, my husband was quick to dispel my theory, explaining why a cancer of the lymphatic system wasn’t as bad as other cancers.
If you’ve been reading my blogs you know I like to make analogies to the 405 freeway here in California, so here is a explanation of lymphoma I think you will be able to compare to any highway, regardless of where you live.
The lymphatic vessels are like the vast interstate system with all their cloverleaf interchanges, exits and entrance ramps, rest stops and heavy traffic of &amp;#8220;cars&amp;#8221; (lymphocytes and other cells circulating in the vessels).
One differentiating feature of lymphoma is that the &amp;#8220;interstate&amp;#8221; highways of lymphatic vessels are designed to carry heavy traffic and can swell, along with the lymph nodes, to a very large size before symptoms occur. The increase in cells and traffic occurs slowly over years and years, unlike an acute infection where the lymph nodes swell very quickly, causing symptoms of heat and pain.
At some point, however, the extremely enlarged lymphatic vascular highways become so engorged and swollen with B lymphocyte &amp;#8220;cars&amp;#8221; that won&amp;#8217;t run out of gas and die, that they can then block off nearby vessels and ducts (e.g., the ureter) which can then lead to severe symptoms, organ failure and death.
The way that cancers kill varies, but often they expand so that the function of other organs cannot work, or their tubing (vasculature, ducts, etc.) is blocked. In lymphoma, the organ system most directly affected (i.e. the lymphatic system) is itself the &amp;#8220;tubing.&amp;#8221; Most of the lymphatic system is an extensive series of interconnected lymphatic vessels (see diagram below) with way stations or &amp;#8220;rest stops&amp;#8221; called lymph nodes.

B lymphocytes, produced first from stem cells in the bone marrow and then traveling to &amp;#8220;rest&amp;#8221; in the germinal centers of lymph nodes are then exposed to antigens, bacteria, other white cells entering via the afferent (sensory) lymphatic vessels, which then causes the B lymphocytes in the germinal centers to divide into specific plasma cells, which make antibodies to fight specific diseases, antigens, etc. While this is happening, the lymph node can swell due to all the new B cells and plasma cells being produced there, before exiting the lymph node via the veins (or efferent lymphatic vessels).
The reason why it is good news (as so many doctors have told me) to have lymphoma, as compared to other cancers is this: Other cancers (breast, liver, pancreas, etc.) originate in places other than the lymph system, and they release cancer cells into the lymphatic vessels, which are foreign to the lymphatic system (unlike B lymphocytes which live in the lymphatic system). This is a different matter altogether, since the danger here is that these individual cancer cells from other organs gain access to the lymphatic vessels and can then travel the lymphatic highway, reaching other organ systems where they metastasize, creating a dire situation. The way I see it is that the other cancers spill over onto connecting highways (lymphocytes, i.e., cars, belong on the highway) spewing garbage all over the place. There simply aren’t enough highway workers to clean up the endless barrage of litter, and before you know it – well, there goes the neighborhood.
Now, don’t you feel lucky?
-Diane (Source: Life with Lymphoma)</description>
            <author>Life with Lymphoma</author>
            <type>blogs</type>
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            <pubDate>Thu, 19 Oct 2006 17:55:18 +0100</pubDate>
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            <title>A few more tidbits about cancer trials, treatment and side effects</title>
            <link>http://blog.healthtalk.com/lymphoma/life-with-lymphoma/a-few-more-tidbits-about-cancer-trials-treatment-and-side-efffects/</link>
            <description>On September 29th, Reuters reported that idiotypic vaccination benefits patients with follicular lymphoma following their first relapse.
&amp;#8220;This is the first time a human cancer vaccine has proved beneficial
to patients,&amp;#8221; Dr. Maurizio Bendandi from University of Navarra, Pamplona, Spain told Reuters Health. At the time of his report, 20 of the 25 patients had gone 33 months and not relapsed.
I didn’t see anything in the report that mentioned the patients received chemo first and then the vaccine, so hopefully this means it was the vaccine only. The Favrille vaccine (we are still awaiting their findings) given in a stage III trial used Rituxan (rituximab) and a vaccine – no chemo. There are at least three vaccines being used in clinical trials and this is a very exciting area to keep investigating. Researchers are trying to find a vaccine that will induce our own immune systems to recognize and destroy the lymphoma. If this happens it will be a major victory in the fight of this disease.
Another piece of news I read today (10/12) in the Orange County Register shows that 40 percent of children who had cancer and were treated with chemo and/or radiation are likely to have serious health problems as adults. The problems include stroke, heart disease, kidney failure, major joint problems as well as developing new cancers. Those most at risk are children who’ve been treated for cancers of the bone, brain and Hodgkin’s.
Personally I know of two adults (in their 40s) who died of lung cancer 25 years after receiving radiation for Hodgkin’s. I guess the good news is that they wouldn’t have had another 25 years if they weren’t treated, so this is definitely a double-edged sword. Obviously, when a child is diagnosed with cancer, the parents’ primary concern is immediate – keeping the child alive and hope for the best down the road.
The results of this study are due to appear in the New England Journal of Medicine today in a commentary by Philip Rosoff of Duke University School of Medicine. There is free access to newly published articles in the Journal.
A reader responded to one of my blogs that the metallic taste following chemo was a real problem and lasted throughout the treatments. I had actually forgotten about this side effect, but it jogged my memory to how bad it was. I also had that metallic taste and couldn’t taste food for weeks after treatment. The taste buds came back just as I was about to start a new round of chemo. I remember thinking how bad life must be for people who lose their sense of smell and taste because they are intricately connected. It also made me wonder if my weight loss was caused more by this than from the chemo drugs. I simply didn’t eat much because the food was so bland. I didn’t lose my sense of smell, so this made it all the more frustrating.
My sense of taste did come back with a vengeance, though, as I’ve added 10 pounds in the last five years. Oh well. As I usually say, it sure beats the alternative.
-Diane (Source: Life with Lymphoma)</description>
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            <pubDate>Tue, 17 Oct 2006 14:00:15 +0100</pubDate>
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