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Medical Forum / Diseases and Disorders / Cancer / April 2004DLBCL advice please
Hello Everyone, I'm not sure if my son is in a crisis concerning his disease or not. My son (age 40) was diagnosed recently on March 19, 2004 with DLBCL. As yet I have no information about the staging, although his oncologist at Princess Margaret Hosp.said that his disease is "intermediate". He has, as far as I know, only one very large aggressive tumour in his abdomen. It was so large by the time chemo started that he had to stop wearing jeans. Standard CHOP started last Friday 26/03/04. He responded very well, it seemed, because the pain decreased rapidly right after the chemo and is now minimal. However last night (this morning) at 12:30 AM he showed up at my home with a "burning pain" in his general abdominal area. He was walking stooped and in obvious discomfort. I immediately took his temperature which was 36.8. I asked him to go to emergency to get antibiotics but he refused. At 3:00 AM his temperature had dropped to 36.6. He left then and went home. He promised to take his temperature when he woke up but I haven't heard from his this morning. What could cause the burning sensation in his abdomen? At what point should I insist that he go to emerg? Is there anything else I can warn him about or can I help him in any other way? MANY THANKS for any advice. Karen Biopsy 10/03/04 dx 19/03/04 DLBCL Intermediate type B CT 19/03/04 Bone Marrow Aspiration 26/03/04 CHOP x6 26/03/04 Gallium scan, blood test 29/03/04 > Hello Everyone, > [quoted text clipped - 3 lines] > I have no information about the staging, although his oncologist at Princess > Margaret Hosp.said that his disease is "intermediate". That's the grade, not the stage. > He has, as far as I > know, only one very large aggressive tumour in his abdomen. It was so large [quoted text clipped - 17 lines] > > Karen He should certainly contact his oncologist or go to emergency with symptoms like that, and I would be very surprised if his oncologist hadn't told him that in no uncertain terms. Thank you Steph. I notice that I erred in reporting Doug's temperature in my original letter. His temp was 37.8, not 36.8--big difference. Karen > > Hello Everyone, > > [quoted text clipped - 40 lines] > like that, and I would be very surprised if his oncologist hadn't told him > that in no uncertain terms. > Thank you Steph. I notice that I erred in reporting Doug's temperature in my > original letter. His temp was 37.8, not 36.8--big difference. > > Karen Karen DLBC lymphoma is a curable disease in 50+ % of patients, but the chemo used is very aggressive. Patients can get neutropenic sepsis, or bowel perforation, or a myriad of other complications, and ignoring symptoms like your son had is just plain daft...... > Hello Everyone, > [quoted text clipped - 30 lines] > CHOP x6 26/03/04 > Gallium scan, blood test 29/03/04 Hello Karen and welcome to alt.support.cancer I see that Steph's already answered you. I'm sorry for the circumstance that has brought you to us, but this is the place to be for support and information. There's also private mail lists at http://www.acor.org/ I am happy to hear that you've re-established connection with your son and that you had some good years before his illness occurred. It's no doubt a great comfort for him to have you in his life at this difficult time. There's at least one other person here from your Province and others from Canada, so you're in good company. Steph's a radiation oncolgist and Mike is an expert in palliative care. If this is your first post on Usenet, you may soon be getting spammed in your email inbox - automation picks up e-mails from newsgroup postings, so if you find a way in your Outlook Express to "munge" your e-mail address, it's for the better. If I or others can be of assistance, please don't hesitate to post or just post your thoughts. We'll be here, reading and caring. Best, J Thank you J for the welcome. I already feel very well supported here. The caring plus the information sure works for me! It feels so much better than logging literally hundreds of hours on the net alone. Yes indeed, my son and I have had 5 good years before his dx. Because Doug had been adopted we have special challenges (like who needs more than cancer?). But fortunately he trusts me to find out information and pass on good advice. I have been gently trying to disabuse him of his denial. Example, less than a week after chemo he went to a very large and crowded rock concert--lots of people pressed together and opportunities for infection. The next day he felt that burning sensation in his abdomen. Maybe the crowded circumstances affected him or maybe not, but geesh, why take a chance!? Karen Toronto > > Biopsy 10/03/04 > > dx 19/03/04 DLBCL Intermediate type B [quoted text clipped - 26 lines] > Best, > J > Thank you J for the welcome. I already feel very well supported here. The > caring plus the information sure works for me! It feels so much better than [quoted text clipped - 11 lines] > Karen > Toronto Yes, I just realized you'd posted before, Karen. (The name of the hospital did seem familiar). There was a Dr.Phil show sometime in the past week or so about such reunions. I listened with one ear while doing something else. I always correct him. Unless I missed it, he failed to say "it's like joining two complete strangers suddenly together..takes time to know each other despite the blood connection". (A friend of mine met up with his sister after 40+ years - they started slow, then had 2 years of seeing each other a lot and the past year or so, it's fizzled). Another friend is going to meet her half-brother in May, after exchanges by e-mail for about six months after finding out about his existence. She's just had a surgical biopsy of the breast and the surgeon told her "it's okay". She thought he meant the biopsy was okay, but apparently he meant the wound (healing) and now her doctor wants her to go see a breast cancer specialist in another State. I hope nothing gets in the way of her reunion. I guess that rules out Roger Whittaker eh? <smile> I must say that if I'd booked a spot for one of my fav artists/bands, I would have gone also. Some of us are zealots about music. I don't know how that hospital operates, but here the cancer centre (on first appointment), gives out a booklet called "Your Guide to the XXX Cancer Centre" and the very first page has a contact list, the patient's chart number is filled in and the daytime hours. There's a "Pain and Symptom Management Nurse" line, along with Primary Nurse, Medical and Radiation Oncologist lines/phone numbers. The next page it says (re: after hours) "Patients needing medical care after hours should contact their family doctor or go to their local emergency department. The Cancer Centre has physicians on-call after hours to consult with community doctors and to speak with patients who are having trouble getting local medical help." (if he doesn't have such a list or booklet, try to help him get or make one and keep a list with him at all times). Well, try to find a family physician in the middle of the night ! I'm trying to think how he might have been thinking...and/or various scenarios... "Right, I've just come from a rock concert, it's XXX time in the a.m., the ER is probably crowded with people waiting, I don't have my contact list nor my diagnosis, they might think I'm looking for "drugs", I'll go see my mother, maybe she'll know what to do". OR "I'm in too much pain and can't bear the thought of sitting in the ER waiting" OR "I can't tell them I didn't take my medication last night because I was going to the rock concert, so since I'm nearby, I'll take it now and go crash at my mother's" OR "maybe it was the food I ate at the concert - indigestion" etc etc. It is heart warming to know that he went to you, in his time of need. It must have been such a worry for you, after he left. How's he doing now? Is he in hospital or has it been sorted out? ( ( ( Karen ) ) ) J Dear J, Since Doug's dx, he has come to see me almost every evening for support. he does listen to me but naturally he also wants to retain his own autonomy as an adult. This has been no problem for me until cancer reared it's ugly head. Sometimes his autonomy interferes with his health--seriously as we have witnessed recently. That's when the big momma guns come out. Unfortunately sometimes there isn't time to process one's emotional needs when a life-threatening condition appears (as in sudden general pain in the abdomen indicating one of several serious problems as Steph kindly pointed out). Doug is okay now, his temperature did go down and the abdominal pain abated. But WE know that it may come back. What was going on in his head? I dunno! Mostly it was denial I suspect, like, "Maybe if I try to ignore it it will go away". Doug HATES being the centre of attention but malignant cancer requires this a lot of the time. Somehow he feels unworthy of the attention. I have told him more than once to put himself first and the rest of us will support him. He just doesn't get this--it's deep, probably stemming from his adoption, the much discussed "primal wound" described by Nancy Verrier in her book of the same name. Not to worry, I have made him promise to call his onc on Monday and to never never do that again. I don't know if the Princess Margaret Hosp. gave him guidelines about what to do if post chemo problems arise. I'll find out--good point-- and if necessary I will write it for them. Doug doesn't have the skills. He's a machinist who hasn't written anything in years. Only got a computer and email two weeks ago--his treat to himself during convalescence. BTW did you know that machinists are at risk of acquiring lymphoma? It's because of the carcinogenic substances in the lubricating oils they use, what he calls the "cutting oils". Welders too as well as herbicide and pesticide workers. I found studies corroborating this in PubMed. Adoption. it is heart-warming but much more than that. Dr. Phil has no idea what he's gotten himself involved with--how deep and very complicated it is. It's so much more than what this pop psychologist cum TV host understands. If he really wanted to perform this "service" of helping people get through the trauma of adoption reunion he should be publicising the HEALTH risks to the group of people who cannot know their familial medical histories of cancer, heart disease, kidney disease, Huntington's Chorea, haemophilia and all of the up to 3000 inheritable diseases. I talked more about this in my post to Andy. Last year in Ontario an adoptee successfully sued the government for millions of $$ (don't know exact am't, it was publicly banned) because the gov't agency that had arranged her adoption failed to tell her that her natural mother had approached them years earlier with info about a deadly disease, PKD, that had infested her family, killing at least one of them in his 40s. My friend got this disease but doctors couldn't diagnose it for 11 years. Meanwhile she had three kids, all of whom inherited the disease. Bottom line: secret adoption kills. Who wouldn't want to know if his or her mother/father/sibs etc. had cancer? Further, if it's true that SV40 (simian virus in polio vaccine administered from 1955-1963 to millions of us including me) that has been identified in 43% of all lymphomas can be passed on in utero from mother to child, shouldn't everyone (including adoptees and their birth sibs) be alerted to this possibility? I know that this is unproven yet, but it still remains a possibility since the same gene sequence in the original SV40 is present in the studied lymphomas. See Lymfomation.org at http://www.lymphomation.org/sv40-virus.htm. I'm glad that your friends have connected with their birth families. Your friend who no longer has contact might reconsider if only because of the potential health knowledge he could find out over time. Reunion is a minefield for some, it's true, but IMHO the benefits outweigh the risks. I suggest that your friends join local peer lead support groups to help them. If they or anyone reading this wants direction please feel free to write me privately at ccnm@rogers.com. Man I have gone on! Thanks J again. I really value your and the other support in this group. I'll give back in any way I can. Cheers (Ha!) Karen > > I have been gently trying to disabuse him of his denial. Example, less than > > a week after chemo he went to a very large and crowded rock concert--lots of [quoted text clipped - 51 lines] > ( ( ( Karen ) ) ) > J Hi Karen, I can tell you from experience that Princess Margaret and Mount Sinai are excellent cancer centres. Patrick, my other half had been to Toronto for treatment for about 2 years because the doctors in our area did not know what to do. >Doug is okay now, his temperature did go down and the abdominal pain abated. >But WE know that it may come back. What was going on in his head? I dunno! >Mostly it was denial I suspect, like, "Maybe if I try to ignore it it will >go away". Doug HATES being the centre of attention but malignant cancer >requires this a lot of the time. Somehow he feels unworthy of the attention Although your son and Patrick are of different ages(22 years old at time of diagnosis), they seem to have the same personality. Patrick would leave the hospital before the end of treatment, come and go when he pleased for appointments and basically try to keep himself in control of an uncontrollable situation. He stressed the hell out of me! I would come home from work and find him home, and then the calls would start, he frustrated everyone involved and some were understanding, some weren't, but he was always able to be incontrol of his situation. I think that part of your son is just trying to keep control of his situation any way he can. He will know what he needs to go to the doctor, even if he doesn't want to let you know! The doctors at Princess Margaret are excellent, and to tell you the truth, I am glad that Patrick had the care up in Toronto instead of here, the care is much better, for the treatment end of it anyway. Take care for now Hugs and prayers, Salisha Thanks Salisha, I hope that Patrick is doing well after his excellent care at PMH. Yes, it's a wonderful place. I agree that control issues must surely impact people's willingness to comply with treatment. I guess that's one of the roles of caregivers, to make sure that the control doesn't get out of control LOL. Warm wishes from TO. Sounds like you are from Northern ON? Karen > Hi Karen, > I can tell you from experience that Princess Margaret and Mount Sinai are [quoted text clipped - 27 lines] > Hugs and prayers, > Salisha Hi Karen, Unfortunately, Patrick's cancer was very rare and he stopped responding to treatment last June. He passed away on February 29th after a 3 year battle with the disease. I miss him very much. No actually, we are from the Maritimes. We traveled 5 times up to Toronto, 2 were for a month stay and the other three times were for just a week. The treatment regiment was decided in Toronto and then given down here. His surgery was done in Toronto and it was very successful, however his cancer was extremely aggressive and he had very hard odds to beat. I hope your son is doing better now, I will keep you in my prayers. Salisha I'm so sorry Salisha. I can only imagine the pain and lonliness you must be feeling so I'm so glad you're here to get support from those of us who, at least, understand best. I once asked a psychiatrist how to deal with grief. He asked if he could pinch my flesh. He did and it hurt, then he let go. He said, "You have to begin to recognise and appreciate the benefits you get from letting go." "Benefits?" I thought. It seems disloyal and cruel to have to recognise benefits of a great loss. I remember experiencing with guilt the benefits that crept into my mind after my mother died. They were things like, now I am free to live the rest of my life and I no longer have to worry about her. I can't say it completely worked since I'd rather have my mom than any benefits from her absence in my life. But really, in the end, there's nothing else to do except move on with my life. I hope you too can some time, when you're ready, place Patrick in your heart as a loving memory and find ways to reconstruct your life. Can you find a bereavement support group in your area? Perhaps a local hospital can help. You must have sooo much to process. ((( Big Hugs from west to east ))) Karen > Hi Karen, > Unfortunately, Patrick's cancer was very rare and he stopped responding to [quoted text clipped - 7 lines] > I hope your son is doing better now, I will keep you in my prayers. > Salisha > Dear J, > [quoted text clipped - 28 lines] > "cutting oils". Welders too as well as herbicide and pesticide workers. I > found studies corroborating this in PubMed. Hi Karen, I'll have to drop (for now) the adoption discussions and risk factors. So he can read but not write? Or can read terms that relate to his occupation? I've been around welding and welders, and was wondering, is he still working? Do you think he'll be able to return to his work? If not, he may want to start researching other careers, upgrading perhaps if some of his skills are transportable to other occupations? If he's not working, I assume he's on work-related disability or UIC sick benefits (which only last so long). Something to remember is to find someone expert to explain to him how to keep his CPP contributions going. (in case he ever needs them for disability related matters) and eventually for retirement benefits. I think how it stands right now there must be contributions in 4 of the past 7 years (for disability). There's another disability plan in ONT but it's geared to those who don't have (or have to use up) their assets first. I'm not saying he won't get cured or gain remission. I don't know. But in my mind it's best to consider all options and make sure one's "butt" is covered just in case. (don't post personal details here, it's just an FYI and something to look into and perhaps he hasn't thought about it). Haven't heard from you in a few days. Hope it's not because I'm tardy in replying. Busy week here. I'll watch for your posts and updates, Best J Hi J, > I've been around welding and welders, and was wondering, is he still working? No, Doug stopped working the day that the ultrasound detected the large tumour (February 20th) that later turned out to be DLCBL on March 19th dx. I understand that he's getting 2/3 of his salary for about three months. > So he can read but not write? Or can read terms that relate to his occupation? He can write but he's just not skilled, never having had to write for many years. When he needs to write something important I try to support him by correcting his grammar, vocabulary etc. while not writing it for him or changing his ideas. I think his writing skills are improving. I'm a language teacher so (I hope) I know how to do this without doing too much for learners. But as a mother I want to do everything for him and have to hold myself back. His independance is most important. Never thought of it before, but disease literacy (like computer literacy) is a separate skill. > Do you think he'll be able to return to his work? He wants to return to work but he's understandably fearful of the chemicals in his environment (he's a machinist/millwright who does some welding). Says he'll wear gloves from now on when working with cutting fluids (lubricating fluids) that are implicated in causing cancer. He also plans to wear a mask when welding or near fumes in the factory. There's a lot of printing done in his company that prints packaging for other companies. > If not, he may want to start researching other careers, upgrading perhaps if > some of his skills are transportable to other occupations? Great idea and this is my hope too. I suggested this but he's not ready to consider it yet. > If he's not working, I assume he's on work-related disability or UIC sick > benefits (which only last so long). Yes, he should contact EI and find out his entitlements. Seems to me that his salary will run out before he has finished CHOP in July so he will need this. > Something to remember is to find someone expert to explain to him how to keep > his CPP contributions going. (in case he ever needs them for disability related > matters) and eventually for retirement benefits. I think how it stands right now > there must be contributions in 4 of the past 7 years (for disability). Right again. I told him to contact his union asap to find out his rights etc. but he still hasn't done this yet. In addition, his union may be interested in his disease since it may be occupational related. I know that unions are more and more concerned about occupational diseases--well they ought. > There's another disability plan in ONT but it's geared to those who don't have > (or have to use up) their assets first. That's good to know but it won't work for him right now. > I'll watch for your posts and updates, Thanks J. Yesterday Doug's hair started falling out, right on schedule, 13 days post-CHOP. But otherwise he feels normal and his tumour has shrunk so that it's no longer visibly detectable. Second CHOP on April 20th. > Best > J Thanks J. Your comments are invaluable. Cheers and warmest regards, Karen > Thanks J. Yesterday Doug's hair started falling out, right on schedule, 13 > days post-CHOP. But otherwise he feels normal and his tumour has shrunk so > that it's no longer visibly detectable. Second CHOP on April 20th. Hello Karen, Gee that's good news ! (well, not the hair part but it will grow back eventually ), But keeping in mind that Steph mentioned "aggressive treatment" and estimating April -July (3 or 4 months of treatment), I hope he realizes the further into his treatments, the less well he will likely feel and be able to cope with bureaucratic matters (much less perhaps welding and print fumes and physical work). His union may (or may not ) have dealt with others going through aggressive chemotherapy. If not, some may not appreciate the toll it can take on a person. In that regard, I found an example (and he was just a bus driver -not to deprecate bus drivers) http://wylderose.com/sitewelcome.html March/03 6 months of chemo and 20 radiation sessions, return to work - Feb/04 (so that's almost a year off work) and then back to a "sedentary job". The other point is that if Doug thinks that Worker's Comp (work-related illness) is there to help him, he's wrong. Much like many other disability related "plans", they fight tooth and nail to not have to pay out. My friend is into year 5 of a work-related injury with no money coming in, in the meantime. So if he's a little "naive" about "hey, all I have to do is tell them I have/had lymphoma" and everyone will spread out the red carpet and money starts rolling in, I suspect that's not the case. Whoosh, welding and printing fumes ! The last place I lived was beside a print shop. Nice people but if I went there to ask or tell them something, I had to stand in the doorway, it was awful. Even the owner was sick from it, and he had his adult daughter working there. When I asked "why not ventilate", he said "too much in energy costs - heat or A/C". Hopefully you can motivate Doug into looking into these sooner rather than later. It's the "plan for the worst scenario and hope that his situation will be better" (than the example above). I wish we had others here who had similar situations, but each situation is different. Ron's aunt has CNS lymphoma and I think she hoped to return to work last Fall - that hasn't happened. Friend on another newsgroup, had same diagnosed last August and she's not back to work yet. She had chemo then stem cell transplant and had many hospitalizations. I'd tell you about her. She's a writer in Calgary and is up for an award being given in Victoria BC for children's books, but I'm not allowed to spam here. ;-) We're so proud of her having gone through this and coming out the other side relatively well, but it was a tough "row to hoe" as they say. So not to be a downer, just so you or Doug don't say you weren't warned. Now I'll try to shut up about this. <smile> Warm hugs to you and Doug J Hi J: Your comments are, as usual, right on. I'll keep them in mind and try to continue planting the seeds in Doug's mind. > But keeping in mind that Steph mentioned "aggressive treatment" and estimating > April -July (3 or 4 months of treatment), I hope he realizes the further into > his treatments, the less well he will likely feel and be able to cope with > bureaucratic matters (much less perhaps welding and print fumes and physical > work). Good idea to mention this to Doug. He still thinks he's Superman. > His union may (or may not ) have dealt with others going through aggressive > chemotherapy. If not, some may not appreciate the toll it can take on a person. > In that regard, I found an example (and he was just a bus driver -not to > deprecate bus drivers) http://wylderose.com/sitewelcome.html March/03 6 months > of chemo and 20 radiation sessions, return to work - Feb/04 (so that's almost a > year off work) and then back to a "sedentary job". Doug's Union is a huge international union-forget the name-so they should know about chemo and perhaps be interested in occupational risks. I'm not only concerned about occupational risks (for cancer) for all workers, I'm very concerned about the ongoing risks Doug may encounter by returning to work too early. The SAME environment will prevail with all of the chemicals in the air. But at least he talked about owning a mask that aggressively filters out chemicals in the air. It actually has a motor in it. I'd like to find out more about this to find out exactly which chemicals it filters and how effective it is. Doug has promised me he'd wear gloves when working with lubricating fluids. > The other point is that if Doug thinks that Worker's Comp (work-related illness) > is there to help him, he's wrong. Much like many other disability related [quoted text clipped - 3 lines] > lymphoma" and everyone will spread out the red carpet and money starts rolling > in, I suspect that's not the case. I agree! > Whoosh, welding and printing fumes ! The last place I lived was beside a print > shop. Nice people but if I went there to ask or tell them something, I had to > stand in the doorway, it was awful. Even the owner was sick from it, and he had > his adult daughter working there. When I asked "why not ventilate", he said "too > much in energy costs - heat or A/C". Head in the sand, cemented in fact. This is actually illegal and can be reported to the Ministry of labour, anonymously if necessary. If you're interested, see: http://www.gov.on.ca/LAB/english/hs/ohsaguide/ohsag_9.html "Regulation to Control Exposure to Biological or Chemical Agents: The Act permits atmospheric conditions in the workplace to be controlled. The Regulation respecting Control of Exposure to Biological or Chemical Agents, Regulation 833, sets limits in workplace air for approximately 600 toxic substances." > Hopefully you can motivate Doug into looking into these sooner rather than > later. It's the "plan for the worst scenario and hope that his situation will be [quoted text clipped - 7 lines] > We're so proud of her having gone through this and coming out the other side > relatively well, but it was a tough "row to hoe" as they say. All of these points well-noted. > So not to be a downer, just so you or Doug don't say you weren't warned. Now > I'll try to shut up about this. <smile> Not a downer at all! Good advice is always welcomed. > Warm hugs to you and Doug > J Hugs back J. Karen > Hi J: > Your comments are, as usual, right on. I'll keep them in mind and try to > continue planting the seeds in Doug's mind. Back with more later, before I close down I don't want to lose this http://www.ohcow.on.ca/clinics/sarnia/docs/Vol_1_Iss5.PDF J > > Hi J: > > Your comments are, as usual, right on. I'll keep them in mind and try to [quoted text clipped - 3 lines] > http://www.ohcow.on.ca/clinics/sarnia/docs/Vol_1_Iss5.PDF > J Gee that said a lot of nothing except co-founding factors and no clear cause. J J, this was a GREAT site! It points to a suggested cause of DLBCL and tells one where to report it and get help! From : http://www.ohcow.on.ca/clinics/sarnia/docs/Vol_1_Iss6.PDF See below the association with BENZINE--it fits with machinists: Case 1 - Foundry Worker The worker had been employed at a foundry for 15 years where he had over 50 chemical exposures including toluene, silica dust, asbestos, and metals and their fumes. He then was a painter for ten years. At the age of 65, he developed non-Hodgkin's lymphoma (NHL). Where is the potential culprit? A) Toluene in the paint thinner B) Silica dust in the foundry C) Asbestos D) Metals E) Paint Answers - likely A, B, C, D. Silica dust and asbestos have been studied to a limited degree in the setting of NHL and the evidence for a causal relationship is weak-to-moderate. Working with metals (which may be a surrogate marker for exposure to metal fumes, metal cutting fluids or solvents) has been shown, in the few case-control studies done, to have very high associations with NHL. Paint and painting as an occupation has had weakly positive or negative associations with NHL in case control studies and in a large cohort analysis showed no significant excess. Painters do, however, have elevated rates of lung and bladder cancers. The strongest association is with *benzene*. No, benzene wasn't on the list. The interesting part is that in the era this worker was working with the solvent toluene, it was contaminated up to 25% with benzene. Benzene is a known 'leukemogen', proven on the weight of 100 years of study to cause a wide range of leukemias. The ubiquity of this chemical as a superb solvent and building block for so many other chemicals has resulted in massive global exposure in workplaces and hence, the most readily studied of the solvents. The evidence for benzene causing NHL has been accumulating in case-control studies for decades. However, the most definitive data has come from a cohort study of 74,848 benzene -exposed workers in China [Hayes et al, 1997]. They demonstrated not only a strongly positive association but also a dose response relationship. Moreover, this study demonstrated benzene was associated with a broad range of other hematological malignancies. Diagnosis Chromosomal Abnormality Diffuse large B-cell lymphoma Translocations (14;18) and others > > Back with more later, before I close down I don't want to lose this > > http://www.ohcow.on.ca/clinics/sarnia/docs/Vol_1_Iss5.PDF > > J > > Gee that said a lot of nothing except co-founding factors and no clear cause. > J Also of great interest to me was: http://www.ohcow.on.ca/press_release/Health_Hazards_of_Solvents_files/frame.htm - see machinists, solvents etc. Thanks! This turned out to be a gold mine. Karen > J, this was a GREAT site! <snipped>Thanks! This turned out to be a gold mine. > Karen Hi Karen, I had a quick look. I guess my focus is on his possible financials if he's not well enough to return to work as quickly as he might think and yours and his are proving a possible connection between lymphoma and his workplace? I guess one of my concerns is these abdominal pains and how long the treatment will be able to keep them at bay. Or stop them completely, if not how will he be able to work with that? And the fatigue that might come from the treatments, which can cause low bloodwork and breathing problems. I don't know these masks with motors, but they sound heavy to wear if a person is doing physical work and be able to breathe properly. I'll have to leave that and let you and he explore what you are going to do. If the company and union are as large as you say, they'd likely know if there was a "cluster" of those who had similar illnesses, over the years, but getting them to admit it is another thing. Playing devils' advocate..."then why didn't he use the mask before?"..."you could find a job elsewhere"......"bring us experts who will definitely say that your son's lymphoma occurred because of the work environment" OR if it ends up in a Worker's comp claim, see previous comment about the delays and I forgot to mention lawyer's costs. So I'm back to saying explore other disability related income possibilities (UIC/CPP etc). Picking up the paperwork and knowing the ifs, ands and 'buts", so it's on hand in case he needs to hurry up and apply so he can keep a roof over his head, or continue paying utilities or whatever else comprises his monthly bills. So he doesn't suddenly end up at the end of whatever benefits he knows he has and end up on welfare, which barely covers rent. Yes, I think you heard me the first time. ;-) I'll leave all this with you. This is the Google search I was working on when I left off when I saw the "on.ca" website. http://tinyurl.com/26qsb Thank you for the websites you posted, I've saved them to look over when I have time. Keep in touch and let us know how you are both doing. J PS I saw my friend yesterday and she tells me a person cannot sue a company if it's covered by Worker's Comp. No time to talk about the adoption/reunion issue because her 3 sons and girlfriends were there and one couple and the parents were talking about upcoming wedding plans and we were also celebrating the grandfather's birthday. Hi Jay, I too am very concerned about financials. I reminded Doug again tonight to phone his union and *get information*. He promised me he would this week. I really think that he should forget about work until the next five chemo treatments are over and he recovers. So far it looks very good--he feels "normal" except he's more tired than usual. He *feels* that the tumour has shrunk more than 50% after only one CHOP. Yes the union should know about lymphoma and where clusters of the disease appear in groups of workers. He worked previously with a company for 11 years in a company without adequate ventilation. At the moment he's hell-bent on getting even with this company, but really, as you suggested, proving causality would be hard and expensive. I don't hold out much hope for that but it's nice to see him energetic about it, at least, and not sepressed with his disease. If he chooses to fight he may be able to get a pro bono lawyer IF the lawyer thinks he has a case. I know a good one who I'll refer him to. Your Google search was awesome. Thank you so much J for all your advice and the time you have taken to help us. Cheers and THANKS, Karen > > J, this was a GREAT site! <snipped>Thanks! This turned out to be a gold mine. > > Karen [quoted text clipped - 44 lines] > were there and one couple and the parents were talking about upcoming wedding plans > and we were also celebrating the grandfather's birthday. > Hi Jay, > [quoted text clipped - 22 lines] > > Karen Oh good Karen, we're on the "same page". I've got "anger is an energy" marked on an old (but nice) pair of sports shoes. And that it can be, so if anger helps him stay energized through his course of treatments, all the better. I'm glad you've got a lawyer you can trust. That way if he stands no chance of proving a connection, hopefully the lawyer will tell him to let it go. I am very aware that (some/many) companies do not provide adequate ventilation and it can cause all kinds of woes for the workers. Yet many are too afraid to "stir things up" for fear of being maligned by other workers or even being fired. Since Doug is out of there, he may be able to report it to the website that you posted earlier. However, now that he's out of there, the company may have since made changes and he's got to "choose his fights carefully" so as not to cause himself more distress while undergoing treatments. In other words, keep his energy and eye on the goal, his health. Yep, that Google search engine is great. If you know which websites are BS and which have more credible information. It takes time to wade through search results. I can usually tell by looking at the url on the summary page, so that I don't have to click on each one and waste time reading through useless web pages. I forgot to ask, what's happening with the lump on his elbow? Are they planning to do something about that and the basal cell spot on his nose? Radiation therapy later? or? Keep in touch, Hugs to you Karen and best wishes for Doug J Hi Back J, You said: > I am very aware that (some/many) companies do not provide adequate ventilation and it can cause all kinds of woes for the workers. Yet many are too afraid to "stir things up" for fear of being maligned by other workers or even being fired. Yes, I used to teach English to immigrants in factories. I often tried to get them to complain anonymously to the government (Min. of Labour) about the horrid conditions but they never did--always so afraid of being fired and unable to get a new job. People put up with unbelievable conditions! And then the Conservatives made it worse. Hex on them. Little did I know at the same time my son was being exposed to dangerous chemicals in a factory in the same neighbourhood. >Since Doug is out of there, he may be able to report it to the website > that you posted earlier. However, now that he's out of there, the company may > have since made changes and he's got to "choose his fights carefully" so as not > to cause himself more distress while undergoing treatments. In other words, keep > his energy and eye on the goal, his health. This particular plant of a much larger international company shut down. So only a lawyer would know what to do under these circumstances. You're right about keeping his eye on the ball --his health. Yes anger is good, provided that it is channeled carefully and effectively. It can be a stress reliever or a stress creator. > I forgot to ask, what's happening with the lump on his elbow? Are they planning to do something about that and the basal cell spot on his nose? Radiation therapy later? or? Thanks for reminding me. I am preparing a list of questions to ask his onc in person when I get to meet him. (Doug has promised to set up the appointment.) I will ask about the basal cell spot--IF it is basal cell. (On a side note, two years ago I had a small basal cell 'clump' on my own nose removed two years ago, so when his appeared we weren't surprised since Doug has the same fair skin as I do.) But since there was no biopsy of his nose 'thing' and it was diagnosed long before the lymphoma reared it's head, I have to wonder. And the lump on the inside of his left elbow--both the onc and the family doctor say "it's nothing", but really, that's not good enough for me. I'm going to ask directly, "Well, what IS it?" and "Why shouldn't we be concerned?" Don't worry I'll be diplomatic and smile a lot. The onc hasn't even mentioned radiation so that will be one of my questions. Good lord, this doctor hasn't even informed Doug about his staging--just said the "it has spread" and "it's intermediate". Where?? Where did it originate?? These questions are driving me crazy. > Keep in touch, > Hugs to you Karen and best wishes for Doug > J Thanks again for your seemingly endless compassion J. Hugs back, Karen > Hi Back J, > Yes, I used to teach English to immigrants in factories. I often tried to [quoted text clipped - 10 lines] > Yes anger is good, provided that it is channeled carefully and effectively. > It can be a stress reliever or a stress creator. That's true and there's "good stress" and "bad stress" too. If anything, it might motivate him more to tough out the treatments, but after the treatments, he might decide it's not worth pursuing and just ensure that whatever his next work is, there's safety protections for himself in place. > J: > I forgot to ask, what's happening with the lump on his elbow? Are they > planning to do something about that and the basal cell spot on his nose? [quoted text clipped - 16 lines] > said the "it has spread" and "it's intermediate". Where?? Where did it > originate?? These questions are driving me crazy. Hello Karen, Sorry I'm so late getting back. Busy week here. All good questions, I don't have a clue where it might have spread (except maybe the abdominal pain that occurred). The lump on his elbow might be a lipoma but do point it out to the oncologist in case Doug forgets. My aunt called this week, she mentioned that her husband "regularly goes to doctor to get spots treated on his face". That side of our family is weird, they never want to mention the word "C" <smile> so I couldn't say to her, perhaps a radiation oncologist might be better, but since he's not "in the system" for cancer, it might be a tough go to get in. Doug's in, so if the spots are some type of skin cancer, perhaps the radiation oncolgist will have solutions for that. Between the two of you, I'm getting nervous about a spot that suddenly showed up on my nose a week or so ago. I do have other spots that I've been montoring which I attribute to aging spots. I keep forgetting to ask a doctor about which and when something should be looked into, so I'll continue to monitor. I'm at risk also probably (fair skin, lots of sunburns), lots of sun exposure long before the risks were known and no protections, and Dad had something under his eye removed a few years before he passed away. Keep in touch, I read all messages, Just can't always get back to reply in a timely fashion. I hope to hear your update after you get to meet the radiation oncologist Hugs to you and Doug. J > Thanks for reminding me. I am preparing a list of questions to ask his onc > in person when I get to meet him. (Doug has promised to set up the [quoted text clipped - 12 lines] > said the "it has spread" and "it's intermediate". Where?? Where did it > originate?? These questions are driving me crazy. Hi Karen, Is everything all right? I just realized it's been 10 days since we heard from you. Hugs J |
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