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Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

I posted a topic the other day about my biopsies being sent to Dr. Elaine Jaffe at the NIH. We sent her three. An inguinal, epichoclear, and supraclavicular.  The inguinal and epichoclear were read as "benign " and/or due to some sort of inflammatory process. She said she didn't care, she wanted them anyway. The supraclavicular node was mostly necrotic. Although necrosis can be caused by infections, it can also be caused by more serious reasons, as well. I have the usual history...night sweats, chills, weight loss, feel full all the time, tired all the time. LDH was high, hsCRP was ridiculous. CT scans just showed the supraclavicular node and mentioned that organs had a normal appearance but spleen was "slightly impinging  on the anterior aspect of the stomach". Spleen measured 13 cm. I just had a gastric emptying study done because I'm so full and nauseous all the time so we thought it may be delayed gastric emptying. Um...not! The opposite. My stomach is emptying abnormally fast according to the radiologist.  From what I've gathered this can (weirdly) make you feel full, nauseous, and be malnourished because the stomach doesn't break down food for small intestine. So...all this to say if you are a praying person, say a prayer that Dr. Jaffe can read something in that necrotic node. If you don't pray I'll take positive thoughts. I'm a good wife and mom and this has ruined my life for almost 2 years now...and my sweet kids'. My husband and parents already sent me to psychologists and made me go to a mental facility!! And now we are seeing that I obviously have, at the least, severe digestive issues...NOT a "head" issue. Should hear something this week. Thanks for your patience with this long post.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

Miracle,

I am from the "do pray" subset here; there are resolved members on both sides of that question at Lymphoma, as there should be.

Lymphoma, even indolent strains, will usually "show themselves" on CT or PET, and shout "I'm Here !"  I would guess that you are trending toward no Lymphoma, but I will be pulling for you as this third biopsy result is pending.  

Make a promise yourself at this time: Resolve to ACCEPT the results, whatever they indicate. If they are wholly negative for Lymphoma, promise yourself that it is time for a break, and seek diagnosis via some other condition.   Such would be both a reasonable and faithful response. Please share the results,

max

 

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

I am sorry it is taking so long for the results from Dr Jaffe.  However, she was the one who diagnosed my Lymphoma and I have the utmost confidence in her. I know they stain the slides and some of it can take a lot longer than we would like. In reference to your family asking you to see a psychologist I understand. During my treatment I mentioned that I was getting short of breadth to my Doctor. He smiled and I said you think it is anxiety and he said yes. Well I get anxious just like most people but have never had anxiety attacks. I was informed by family and friends that I had never gone through chemo and Lymphoma and it was probably anxiety. Well the next PET scan guess what showed up? Yes my lungs had an issue. So listen to your body. Every symptom I have told them they eventually found there was a cause. I got to where I thought maybe some of it was in my head. It was not. I will pray for you and please let us know what they find. I think sometimes the waiting is the worst part. 

Sandy Ray

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

Thanks guys.  My CT clearly showed the supraclavicular node.  Glad y'all are in the praying camp. I will certainly let y'all know whatever she says.  Take care.

lindary's picture
lindary
Posts: 641
Joined: Mar 2015

I too believe in prayers. I work with people who were born in other countries. Some of those countries are known to have a small, if any, christian population.  When I told the team I worked with about my cancer several asked if it was ok if they had family back home pray for me. My response always was "I don't care what religion they are, prayers will always be accpeted.". I am convinced it helped me get through a lot of things. 

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

Max I think your neighbor had a necrotic node like mine (saw that in an old post). MD Anderson research and research their respected path departments usually link necrotis to lymphoma. Those nodes are tough or impossible to read. I hope she sees something in one of my nodes. How did he finally get answers? Sandy Ray, your family sounds like mine. They said my weight loss was anxiety...well, the night sweats and nodes all over my body weren't!! Lindart, thank you. I don't care about losing my hair. I just want to be better. Good night 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

Miracle,

I do not know or understand all of the details regarding my current neighbor's NHL.  Some of it did not make sense to me (then or now), but I only know what they discussed with me "across the backyard fence."  I do know the oncologist he used, becasue her office is inside the same building my oncologist is headquartered in.   My neighbor's wife told me he had been being tested for Lymphoma for "a few years," but tests kept coming back suspicious or negative.

She also told me that he "did not like doctors," and was not very cooperative in his diagnosis.  Finally, he became so swollen that he could no longer lie down in bed -- they said he had to sleep sitting up in a recliner, until even breathing got difficult. He was then biopsied positive for NHL, and began heavy chemo, which sounded most likely to me to be R-CHOP.  The only drug they could confirm was Prednisone, which fits.  I would have guessed R-EPOCH, but he was never hospitalized for infusions.  (At least parts of R-EPOCH are given in a hospital with overnight stays, although rarely a patient reports not spending the night.)

He went straight in to full remission after 6 months of infusions (the norm for most Stage IV NHLs).  Amazing to me, his wife told me about two years ago when I asked how he was, "He feels good, but has not been back to the oncologist."   She also said, "if he relapses he would rather die than go through treatment again."   I guess his age currently as about 54, and he otherwise has had good health.  Some people are of that viewpoint.  It is POSSIBLE that he was diagnosed before they shared, and he just waited till he was too miserable to endure it any longer.  As I said, I only know what they told me, which did not fit together exactly right.  It also amazed me....no it ASTONISHES me, when people tell me they "don't know" what chemo they are receiving, or took, but that is a different discussion.  It is analogous to me to saying "I don't know where I used to live" or "I can't remember what brand of car I drive."

If you trace back through my posts, be aware of the following: I moved across my little town about 6 years ago, not long after I entered N.E.D.  My next-door neighbor from my previous address also came down with Stage IV NHL, but he was younger, maybe 35 at that time, and he did six months of R-EPOCH, and his infusions were all during hospitalizations....he is the fellow who went from about 300 pounds to around 150, and could not walk or stand up during most of his treatment period.  His room-mate, who is a body builder, used to have to carry him out to the car to go to infusion, wrapped in blakets, because it was during the winter.  The first time I saw this was before we knew he was sick, and I told my wife, "I saw ----- carrying ----- out to the car this morning.  He looked like he was about to die, some cancer or something. Looked like a skeleton, couldn't speak."  I was ccorrect.  He is well today, and I am familiar whith his oncologist also.  He is also the guy whom I have mentioned several times as having to have both hips replaced two years later, due to bone death induced by the chemo.

Remarkable, me and both next-door neighbors being stricken in such similiar manners. Our areas are NOT known for environmental hazards, and there were no other lymphomas around us,, that I have heard of. 

My main takeraway:   Most Lymphomas can almost always be put into full remission.

max

 

Sal0101's picture
Sal0101
Posts: 124
Joined: Sep 2015

Max, I'm not your neighbor ( what is the true definition of neighbor) but I feel like we are. You have helped me more than you know! Yep, you and Po.

I talked to my neighbor a few minutes ago. They have 1 year old twins. The girls have had fevers and colds the last few weeks.  Good parents! They worry and they should!  I've had fevers and more colds the last 8 months than I have had in my lifetime. I didn't give it another thought until I realized recently that I really do have a compromised immune system. 

As you all know, I took a year off of work. Stopped into the office today to turn my keys in. (not official, but close). I found out that a long time co-workers daughter was diagnosed with cancer. I ran into her twice in the last 6months. Most recent was 4 weeks ago.  She is 6 Years old!  What???  Why? 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

None I'd rather have as a neighbor than you, Sal, whether actual or electronic.

I am having trouble working myself, but havn't quit just yet. Not cancer of course, just the left-overs from decades of sickness.  My current job requires dexterity, but my neuropathy precludes that.  My brother just learned that his beloved granddaughter is in rehab in another state for heroin addiction.

You have won your cancer fights, and will remain a winner,

max

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Max, 

When reading your post a smile came across my face. I have met several people who have cancer or close family members who have had Lymphoma. Sometimes I ask them what type of chemo they or receiving or what type Lymphoma they have been diagnosed with. When they say I do not know I am blown away. I guess everyone is different. However, to me not knowing those important facts is crazy. It is like yeah I bought a house but not sure what I paid for it but I guess it's mine. Several coworkers have told me they would not ask their Doctor they would just take the treatments. Well each to his own. You can be assured if you are giving me anything you will be required to tell me what and why before it is administered. I am not rude I have no temper to speak of but I need to know what our plan is. Lucky for me my Dr. Is ok with that . When I had to call him after hours he felt comfortable asking me my neutrophil counts so he could make a decision. I hope and think he feels like I help him because he knows I am able to make some decisions and he does not have to treat me like a child. Anyway I have been to doctor or test everyday for 9 working days in a row. Today after speaking with Dr if I feel well and everything is ok no more visits for 6 weeks! After 6 months of visits I am like a kid at Christmas!

Have a good day!

Sandy Ray

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

Lindary, sorry. My phone doesn't want me to type your name! 

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

That's crazy! How can someone not know their chemo? I'm aware that there are different types and they all have different side effects. When I have been in the hospital I know everything they are giving me AND I tell them twice what I'm allergic to!! 

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

Max!!! I'm scared of chemo after all that!

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Miracle 3,

Do not be scared many are not that drastic. I just finished 6 rounds of RCHOP. Was it fun no! Was it as bad as I anticipated? No. Would I do it again?  Well they tell me there is no evidence of cancer left and in 6 months I should be moving right along. Pretty sure it was a small bump in the road and well worth it. In no way is Chemo a vacation or something to get excited about. I would much rather had taken 2 weeks of antibiotics and been well. However it was bearable and the more info I got on this forum the better I was able to handle the side effects and know what to expect. If needed you can do this and I pray you have a smooth ride. I know not everyone does but not everyone has the worst either.

Sandy Ray

stephy
Posts: 1
Joined: Aug 2017

I was diagnosed last Sept  with stage 4 Non Hodgkins double explressor- very fast growing.  Started Chemo with RCHOP in Oct.  It did kick my butt . February 6 last chemo treatment.  I am alive and very grateful.  Have neuropathy and various muscle and joint pains and still very tired.  But in taling to others who have had cancer this is normal.  I just look at it as this is my new normal and if things improve that would be great.  Prayers to all that are going thru chemo.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

Miracle,

MOST Lymphoma experiences are much less draconian than my neighbors' were.

Scared or not scared, the experience is the same, so fear is counterproductive. 

I go to any medical proceedure not caring what is going to happen.  That way, there is no worry.  I was getting IV's for a surgery a few years ago (I think it was a gall bladder removal, or a hernia mesh installed), and the RNs had tried about 4 times, 3 or 4 different women, no luck.   One was apologizing profusely, and I told her, "It's not bothering me.  All I have to do is lie here and enjoy these seditives.  YOU have to do all the WORK....good luck !  In 4 hours I'll head home, regardless."

I had a prostate biopsy 3 years ago. I will not describe how THAT works, but the pain is extreme, and it takes about 30 minutes to get through. It involves a probe, a tissuetearing gun, and some other stuff....  I went back for the results a week later, and the urologist was all melodramatic with my wife and I, apologizing and saying how ok it would be.  Unintentionally, I yawned in her face and told her I needed to get back home and take a nap, and to schedule me with a surgeon, and we walked out.  I knew the results would be cancerous, and knew it was easily fixable, nothing to get all emotional about. The doctor who first told me I was totally consumed with Lymphoma started crying, and I went over and comforted her, and said "It's probably treatable, it'll be ok. Cheer up !"  I have been told I was about to die more than once in ICU, had guns stuck in my back by drug addicts, been on a Naval ship that the officers thought was about to go to the bottom.  No reason to make a big to-do out of this stuff.

This is a core attitude I have had for many years: When you DON'T CARE how the proceedure will hurt, or what the results are, there is no more fear.  I recommend it to all,

max

lindary's picture
lindary
Posts: 641
Joined: Mar 2015

When I was told I had cancer, probably lymphoma my repsonse was "what next?". My Dr gave me the name of an oncologist at our hospital, I made an appt and then started reading up on lymphoma. I learned real quick to limit my research to the last 2 years. I had the appt with the oncologist about a week later. When I went in there I got more details and surprised her with the information I had already gathered. I am a geek and an information junkie. The oncologist had a list of web sites they recommended, there were a few I hadn't found on my own. She also told me the probable chemo I would get so that gave me more to research. 

I can't imagine anyone not knowing what kind of chemo and yet I have met ones like that and some who didn't really know what kind of cancer. My husband's immediate family hear the word cancer and they are planning a funeral. (Yes it was "fun" dealing with the through my treatment.) One person I told multiple times the type I had and survivor rate yet she kept coming back with "how long do you have to live?".  

Guess one reason we are all on this discussion board is because we want to learn more about our disease and the experiences of others. 

ShadyGuy's picture
ShadyGuy
Posts: 389
Joined: Jan 2017

Many years ago my elderly Aunt died with what I now know was liver cancer. They were (very) simple mountain folks. I was a millenial at the time and kept asking what kind of cancer she had. All I got was replies like "she's all eat up with it", "the bad kind" "internal cancer" and the one I remember most was "consumption". Years later I was doing a lot of genealogy and thus collecting death certificates. I was shocked how non-specific causes of death were listed. A really common one was "consumption" which I assume was cancer. "Apoplexy" was a another common one which I assume was a stroke. Many of the people over 60 who died before 1950 the cause of death was listed simply as "old age". Lets stamp out such ignorance. No excuse for it in today's world. This is why I have so little faith in health statistics, especially related to cancer, on any data over 50 years old.

ShadyGuy's picture
ShadyGuy
Posts: 389
Joined: Jan 2017

My research taught me that in the last century it was very common for lymphoma to be misdiagnosed as pneumonia. Very, very common.

ShadyGuy's picture
ShadyGuy
Posts: 389
Joined: Jan 2017

My research taught me that in the last century it was very common for lymphoma to be misdiagnosed as pneumonia. Very, very common. So for gosh sake learn about your disease and treatment! 

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

I also heard consumption was tuberculosis?!  Wow. My great grandfather died of prostate cancer which they didn't call it that, but they said he was in a lot of pain.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

Miracle, Shady,

Yes, 'consumption' was the common term for tubercuolosis in the 19th and early 20th centuries.  Of course, it was probably applied by some to virtually anything.

My oncologist also told me when I began chemo that Hodgkins's was regarded as a form of T.B. until modern times, in part I guess due to it obvously being a WBC disorder.

.

 

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