CancerCompass message board discussion started by patients daughter on 12/18/2007 http://www.cancercompass.com/message-board/message/all,18971,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My father recently was diagnosed with Lymphoma.  We have to wait till the 3rd of Jan. for body CT Scan.  When they initially sent his tumor for more testing, we were told they could not rule out plasmacytoma.  Is Multiple Myeloma a form of lymphoma.Please let me know.   patients daughter Tue, 18 Dec 2007 00:00:00 GMT MM is not a form of lymphoma.  How was he diagnosed?  Lymphoma can be Hodgkin or Non hodgkin.  Plasmacytoma and MM are similar as they are both plasma cell cancers. Oncrx Tue, 18 Dec 2007 00:00:00 GMT A month and 1/2 ago my father was examined by a dentist who noticed puffiness in his left cheek area which did not appear to be directly related to a dental problem.  He developed progressive swelling which necessitated antibiotics.  He has been on a two week course in total.  X-rays showed the left antrum to be problematic with some destruction of the lateral wall.  He says the swellinig in the cheek spontaneously decreased with a gush of foul material from the left cheek area.  He completed a course of Keflex.  Non smoker for many years.  He is otherwise well and can excercise without difficulties.  He had a myocardial infarction three years ago.  He is on Lipitor and Low dose ASA.  Examination:  The ears, TM's and canals are normal.  Endoscopy was performed of the nose and showed obstruction of the left osteomeatal area either due to edema or tissue.  Palpation of the left antral interior wall shows some swelling and tenderness and there is a fistula from the antrum into the left alveolar ridge.  Pressure on the swollen area produces some slight bloody drainage from the opening.  There is normal sensation in the left cheek area.  IMPRESSION:  Destructive lesion left antrum.IMAGING REPORT:  Cheek Ultrasound and Sinuses Plain RadiographThe palpable abnormality within the left cheek area corresponds to a slightly ill defined solid mass measuring 2.9 x .3 x 1.1 cms.  This appears to arise out of the left maxillary sinus through a defect in the anterior wall which measures 11 x 6 mm.Because the lesion appears to be sinus in origin, sinus x-rays were ordered.  They confirm opacification of the left maxillary sinus and ill definition of the medial aspect of the left zygoma which is in keeping with an area of bone destruction.  There is partial opacification of the left ethmoid sinuses. IMPRESSION:  The findings are most in keeping with a neoplasm arising within the left maxillary antrum with destruction of the anterior wall and extension into the left mid facial region.  Infection is a possibility but is much less likely and an appearance such as this would related to an atypical organism.  CT Scan (head) was done this passed 3 weeks ago.Surgery was two weeks ago.  Total surgery time was one and half hours.  He was told there was so much infection that a pathology report was needed before they would know whats going on.  Recovery was 2.5 hours.  Results from the Pathology report were that they could not rule out a plasmacytoma and needed further testing at head pathology in Vancouver.  We were told by our GP that if it came back anything it would be a plasmacytoma.It came back and all we were told was my dad had lymphoma Stage IIIA.I did not know that there were so many types of lymphomas and did not ask the type.  Figured because they could not rule out plasmacytoma (MM), thats what type it was. Everything is happening so quickly.  Such a state of Shock we are in.  Whats going on?  What type of questions do we need to ask?  Two more weeks till full body CT Scan...is an eternity when you know you have cancer.  Then it has to be sent to BC Cancer Association in Victoria for treatment and prognosis.  I have never been so scared in my whole life.  Anything you can tell me would help.  patients daughter Tue, 18 Dec 2007 00:00:00 GMT I can't respond to all the medical info that you have given, but my heart goes out to your last paragraph -- 'waiting for two weeks is an eternity'.  The bottom line is that nothing can/will be done for another two weeks and the probability is that nothing will actually happen to him in the next two weeks,.... so - seize the time that you have and enjoy it to the fullest.  Celebrate the holidays as you have never celebrated before, revelling in the caring and sharing of family and friends.  Focus on all that is joyful, make memories that will last forever, and really be happy!!!  Two weeks will fly by, and then you can face whatever is on the cards.  You will never regret wasting these two weeks -- two weeks of sharing these intense loving positive feelings.  Do not think about the worst case scenerio -- that is a total waste of time and will benefit no one.  Focus on all the positives -- those you've had in the past and those you want for the future, and work towards making them happen.  Diagnosis is just the start of a long journey, one that will change your lives forever, and it's up to you to determine what sort of journey it is going to be.  Know that there are a host of members on this board who will be supporting you and your family on the road ahead.  Our thoughts and prayers will be with you for these next two weeks  -- but you have taken the first positive step by coming here!!  Best wishes for a joyful holiday season,  Cath poppy/cath Wed, 19 Dec 2007 00:00:00 GMT it sounds like a plasmacytoma because of the location and description.  Plasmacytoma is MM in a single location.  The fact that they told you lymphoma does seem confusing.  See if you can clarify this.  There are 20 or so types of lymphoma.  Oncrx Wed, 19 Dec 2007 00:00:00 GMT You said it!!  We are so confused!  When they told us they could not 100% rule out Plasmacytoma, my thoughts were they ruled out everything else.  So when they told us he had Lymphoma, we were numb!  When looking for information on Lymphoma I know it says it can be a lot of different cancers, I thought maybe Plasmacytoma was one!  Thanks for correcting this for me.When this has never happened to you, how do you know the questions you should ask?  My dad is booked the beginning of January for full body CT Scan to see if it is anywhere else.  After that to see the oncologist for the full prognosis and treatment....he's 74.Is there anything you can tell us about Lymphoma?  What questions we should be asking.  I tell you the internet is very scary when you google Nasal Lymphoma, All I see is NK -T Cell Lymphoma (Natural Killer).  Prognosis seems to be poorer over 60?  I need to be strong for my mom and dad, but I am not a strong person.  I deal with thinigs a lot different!!  I guess I need to know what to expect, so I can deal with it before it happens!  That way I am not a "basket case" around them.Questions, he suffers terribly from the night sweats, now that he knows its Lymphoma he is not sleeping.  He needs to rest, he is extremely (putting it mildly) exhausted.  Is there something natural that you can suggest to help him sleep.  He does not want to get addicted to sleeping pills.  Thank you for your responses!    patients daughter Thu, 20 Dec 2007 00:00:00 GMT Thanks Cath!I guess you get so scared of the unknown!  I decorated for Xmas last night, wasn't going to, but I have mom and dad coming.  I just want to make it the best Christmas ever!!!I am going to do my best to be strong for my dad!! AND mom!!   I am a lot like him, we worry about everything!!  He so scared and I can't stand that!! Trying to live one day at a time!  What a sick feeling you get when faced with something like this!  All I can do, is my best!!  Sometimes I just can't control the tears though.Pray we get him better!!  Hope you have a great Xmas! patients daughter Thu, 20 Dec 2007 00:00:00 GMT hang in there.  You are doing fine.  Primary sinus lymphoma is an uncommon presentation of lymphoma that carries the potential risk of spreading to the brain.  Usually these are  more agressive lymphomas like a DLBCL.  The good news is because they are agressive , they respond well to treatment.  Treatment with chemotherapy and irradiation can cure many patients and the addition of intrathecal chemotherapy may reduce the risk of CNS relapse.  For OTC sleep aids try an antihistamine (like Benadryl) or melatonin.   See if you can find out the type of lymphoma. Oncrx Thu, 20 Dec 2007 00:00:00 GMT Thank you so much!  I want you to know how much I appreciate you responding to me!We will not know the type until sometime in the new year.  Body CT Scan on the 3rd of Jan.  then we wait for the appointment with the oncologist 10 days later.Sure makes me feel better when you say that this aggressive cancer responds well to treatment.  Thats good news!!Because it is aggressive though, all this time waiting for CT scans and prognosis is valuable wasted time!  I guess they know what they are doing!!Have a great Christmas, thank you so much, I will get back to you when we have more news.All the best to you and your family at Christmas!  patients daughter Thu, 20 Dec 2007 00:00:00 GMT Good on ya Patient's Daughter!!  Getting the decorations out and setting up for the holidays is the best thing you can do for your parents to assist them in dealing with this wait!!  All of you can focus on the joys of the season and try very hard to reduce the worry that you're feeling because of the wait -- you can even do things that you may never have done before like going out to a Carols night or listening to Christmas music together -- making new memories together!  Thank you for your seasons greetings -- we are really looking forward to being together as a family and celebrating the 'first' Christmas of our youngest grandson so it should be magic -- expeically for me as I was told that I would never be here to witness these last couple of years!! ( you don't want to believe everything that you are told!!)   Take good care and enjoy the blessings of the season  -- our thoughts and prayers are with you all, Cath poppy/cath Thu, 20 Dec 2007 00:00:00 GMT Hey Cath!1st Grandchild!!  OMG, how exciting is that!  This will be one Christmas you'll hold in your heart forever!Sorry, I have been so selfish, I did not realize that you are a Patient!!  I have heard so many people being told they have a certain amount of time and they put their cancers into remission!!!  Glad your okay!  Makes every day a gift!  Thats how I think anyways.  Everyday we have with my dad is such a precious gift --- one does not realize it until your faced with such difficult situations.  I am off to Mexico for two weeks, leaving on the 27th.  We had it booked since last Feb.  I have two daugters and a husband that are coming along.  Sounds like we both are going to have a great holiday season this year!I'll talk with you when I get back and let you know how things are going. Ho Ho Ho Merry Christmas! patients daughter Fri, 21 Dec 2007 00:00:00 GMT Hi Cath!I am back.  Wanted to find out how your christmas was?  My father on Jan 17/08 got his diagnosis.  Stage 4b grade 3 follicular lymphoma, intermediate stage (aggressive), we just finished our first treatment of R-CHOP on Jan 23/08.  Now we know...and can start the research.  Listen, if you run into anyone on this site that has been diagnosed with follicular lymphoma, I have found an excellent site, just on follicular lymphoma.  It is www.lymphomasurival.com .  It is too good of a site for anyone diagnosed with disease to not see. Hope all is well with you sweetie, I've been thinking of you.  patients daughter Wed, 30 Jan 2008 00:00:00 GMT Hi Patient's Daughter!  You must have had a great holiday for your message sounds so 'chirpy' and happy!!  I have gone to the website and it really is very good - Robert Miller sounds very clever and he certainly gives a great positive approach to lymphoma!  I am looking forward to receiving his free article on survival -- that will determine whether or not I go the full way and pay the $35 to be a member of the site.   I have a young friend with Hodgkins lymphoma and I have yet to learn the differences between this and the NON Hod. type -- or any other type for that matter, and then the difference between these and what I have, multiple myeloma.  All I'm really sure of is that they are all blood cancers, however where I've always been told that mine is 'terminal' the prognosis according to Robert Miller seems to be more of a 'chronic' illness and that people live for many years after it is diagnosed.  I do hope for your sake, that this is true!  Especially as they have been able to start treatment so quickly.  As for me...well Christmas was fantastic and proved to me that life is certainly worth fighting for, even in those bleak moments when one has been vomiting for 72 hours and wonders if all this is really worth it.... the answer is YES it is worth fighting for and hanging in there through all the pain and bad stuff!!  There IS light at the end of the tunnel, no matter how bad the journey can get, so keep on keeping on and make sure that you enjoy every good moment to its fullest -- the condition is so fragile that it can change in an instant!!  I'm gradually learning how to 'pace' myself because I'm learning - the hard way - that if I don't rest for at least 6-8 hours a day then I'll become ill very quickly and that the medicines are now taking longer and longer to do their stuff until one day when the medicines won't work at all.    Thats the fact, so I've just got to learn about 'pace'!!  My best wishes to you on this learning journey -- I'm sure that before too long, you will know more about follicular lymphoma than the majority of doctors in the world.  In fact when I was first diagnosed my doctor said as I left his office "I'm sure that you will know more about myeloma than most doctors by the time you come back" -- and two weeks later I did!!  He had never seen a case before he met me, and now we work together -- fortunately with the support of a fantastic oncologist -- to keep me functioning!!  Take good care and please keep in touch!! Cath poppy/cath Wed, 30 Jan 2008 00:00:00 GMT Hi again -- this is a PS to my last note -- I've just read throught the entire message line and noticed that you mentioned that your dad was suffering from 'night sweats'.  Does this sweating only happen at night?  I'm only asking because I'm finding that many people with myeloma seem to suffer from profuse 'hot flush' symptoms -- day and night and that these sweats seem to also be affected by the weather, more profuse in summer than winter.  I'm just curious.  Thanks, Cath poppy/cath Wed, 30 Jan 2008 00:00:00 GMT Cath!  I know Robert is moving his daughter this weekend, but I have the free article.  Is there anyway I can forward it to you?  Let me know, its a very powerful site.  I'm hanging in there, Hope for me started on this site.  Natural stragedy's as well as medical treatments - its more of an integrated approach.  Makes so much sense.  One article he has in there is Optimizing Chemotherapy.  I am slowing getting my father on this program.  Everything has been researched, lots of things are in trials, on medline, etc.  Things are explained in "LAY" terms not medical.  It is Positive and upbeat!! Monthly newsletters, phone numbers for advice, Articles up-to-date!I am making the best of everyday.  One day at a time!  I wonder all the time how we are going to get through this.Cath, maybe this site can help you too!  Even his breakfast was designed for maximum absorption of the nutrients into the lymph system. That alone can only be helpful information for you.   patients daughter Thu, 31 Jan 2008 00:00:00 GMT Cath!  His "sweats" were only at night.  They were soaking sweats!  But none during the day.  I have also heard patients with myeloma have it both during the day and night.  Do you suffer from this?    patients daughter Thu, 31 Jan 2008 00:00:00 GMT Yes, these hot flushes are a real bother!  On really hot days people just think that I'm over heated, and on cold ones they think that I've been caught out in the rain -- but I know in both instances that this is not the case!  I actually operate with three dry wash cloths - one in the car, one in my purse, and one on my bed/chair -- and by the end of the day all three are soaked and need to be replaced!  Who'd believe it??!  Anyhow, I guess that if this is the worst of the problems then I really wouldn't have much to complain about -ha- not that I believe in complaining!!   Thanks for offering to send the article, but I've requested it through the site and I gather that Robert will send it when he returns.  Many thanks, Cath poppy/cath Thu, 31 Jan 2008 00:00:00 GMT Hey Cath!  Those sweats do not sound fun!  Does your treatments help with this side effect?  Anyways, let me know what you think of Robert's site when you get your free article.  If I were you, I would give him a call, the number is on his site and just ask him if thinks this site would be helpful with your myeloma.  I look forward to hearing how you make out.  patients daughter Thu, 31 Jan 2008 00:00:00 GMT As you know PD, I do appreciate Robert's work and am grateful that you are now able to reach me by email.  I just thought I'd finish off this message chain so that people would not think that it just ended, with me never responding to you!  Glad that we're on line -- the MM family through Cancercompass is a really wonderful group of people!!  Thanks for all your work, Cath poppy/cath Thu, 07 Feb 2008 00:00:00 GMT