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younger brother(47yo) was diagnosed with lymphoma

danik's picture
danik
Posts: 6
Joined: Oct 2012

Unfortunately he avoided going to the doctor for almost a year, according to him, and now he moved in with my family. Just in the last 3 weeks he has gotten visibly weaker and today finally after so many tests he goes to his oncology doctor. I hope it is not too late as he gets out of breath just climbing stairs and most of the time rests on a couch in front of TV. He cannot hold down the food and got very skinny. Im very worried...He said doctor suspected indolet lymphoma non-hudgkins... I wonder if he has a fighting chance ... Anyone had anything similar to that and survived? He has lymph nodes in his neck, under his arm and maybe somewhere else. Most of the tests came negative....

bulldog
Posts: 7
Joined: Oct 2012

Before they found that I had cancer last year i too was very short of breath. After chemo treatments and a stem cell transplant I am doing pretty good. Try to stay positive and weigh all options.
PS, and if it were not for my wife, i would have never gone to the doctor. My cancer was in stage 4 by that time. (Today it is gone !)

Keep the Faith,
Bulldog.

jimwins's picture
jimwins
Posts: 2001
Joined: Aug 2011

Welcome Danik,

You'll find wonderfully supportive folks here. Encourage your brother
to join the site if he feels up to it.

Please know that lymphoma is very treatable. I've been in remission now
for very close to a year. There are many people here who have been in
remisson much longer as well so there's lots of hope.

I'm assuming you mean he is visiting an oncologist today? Please keep
us updated and feel free to come here to share, ask questions, vent, etc.

I wish the best for you and your brother.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

danik's picture
danik
Posts: 6
Joined: Oct 2012

Thank you for your kind replies... Yesterday,my brother fainted right after the visit to oncologist. Fortunately it happened right outside doctor's office(Kaiser). He was unconscious just for a few seconds but it was enough for doctor to realize that my brother was extremely dehydrated and running a high fever. They took him to an emergency room and hydrated him all through the night. Also, gave him a lot of antibiotics through his neck vein. I guess that was a very close call.
Doctor said that he has 3 different cancers 2 of which are curable and one is very slow and will be manageable(B-cell).. What means manageable is a bit vague. But it gave us hope. My borther still being hydrated through IVs in both arms and his infections being treated with antibiotics.... I am worried about indolent B-cell cancer that he has... Hopefully at one point some experimental treatment would be available to get rid of that malady....

jimwins's picture
jimwins
Posts: 2001
Joined: Aug 2011

Hi Danik and thanks for the update. What is your brother's name?
When you get a chance, it would help to know the types of cancers involved
so others with similar experience can support/assist. You can put that information
in the "about me" page where it's easily referenced :).

For now, I assume the focus is to get him well enough to work toward treatment.
Indolent cancers are usually slow growing and often are placed in a "watch and
wait" scenario. One of the first things I learned when I started treatment
was they have made a lot of advances in cancer research and treatment. Side effects
are much more manageable too.

Try to take things one day at a time and you're welcome here anytime.

Big hugs to you, your family and your brother,

Jim

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Wow, what good luck he had passing out at the doctors office! Thankfully they were able to get him straight to ER.

I hope he feels better very soon. I hate an IV in one arm, let alone both!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1039
Joined: May 2012

danik,

A "manageable" cancer is one that, in most cases, will remain static or even in remission, usually with "maintenance" therapy or drugs given exactly for that -- to keep a cancer from getting any worse. It is obviously an unsettling state of affairs, but people can live many years, or even the remainder of their natural life expectancy, on manintenance. Maintenance most likely will be started after his first-line treatments are over (treatments for "curative effect," meant to destroy the other two "curable" strains).

Realize that the expectation that something is "curable" or "maintainable" is (usually) based upon statistics gathered from thousands of patients over decades of treatment. What any given individual will do may or may not fall into the normal range.

I have two friends who developed prostate cancer about 13 years ago. One just passed, after having been mostly healthy for most of that long period --well over a decade. The other has been "late stage 4" for two years now (!!), still works, and feels better than he did years ago. He has been on a brand new drug for about five months, and the doc told him last week that he is planning to add yet another brand new drug for late prostate. So yes, new stuff is being added every year.

Do share the particulars, such as what types of lymphoma he has (there are over 30 common strains), what drugs they are planning, etc.

Hang in there yourself. Being the support person can be tougher than being the patient !

max

danik's picture
danik
Posts: 6
Joined: Oct 2012

Thank you so much to all of you for your moral support and kind words.
My brother's name is Ilya. I afraid the situation had worsened since he was admitted to ER. Ilya went into a Septic Shock and now has a breathing tube down his throat and various IVs. He was getting hydrated but his kidneys apparently stopped working and body retained so much water that it was becoming toxic. His body and face are swollen. Yesterday, doctor called asking for a permission to start dialysis and we promptly agreed. My wife is a nurse and that makes it a bit easier for me as she is the one conversing with the medical staff... Prognosis are not too good for people in state of septic shock... I am not very religious but I do pray now for my younger brother Ilya.... These few days are crucial for Ilya. His immune system is almost non-existent.... I put his fate in G-d's hands and doctor's skills and our prayers...
If G-d gives him to survive I will make sure he gets on this site to get moral support from people who have similar heart-wrenching experiences.
And, Jim, thank you so much for getting involved and making so many people feel better.
With regard to 3 various types of cancer he has I need to find out for sure what they are. I believe he has Hodgkin and Non-Hodgkin Lymphomas and some kind of B-cell something....
Danik

hiccup (not verified)

I'm glad your brother has wonder family by his side during all of this. He will gain strength to fight from everyone, so your prayers and thoughts do help him.

Once he gets stabilized, they can start curing the curables and treating the managables.

anliperez915's picture
anliperez915
Posts: 747
Joined: Sep 2011

Danik,
I will keep your brother Ilya and your family in my prayers! Please keep us updated
take care

Sincerely,
Liz

jimwins's picture
jimwins
Posts: 2001
Joined: Aug 2011

Such cool names by the way (Slavic/Russian meaning Daniel and Elijah it seems - sorry
a curious soul here ;)). I remember "Ilya Kuryakin" from a show called
"The Man from Uncle" (yep, I'm old ;)).

I'm so sorry Ilya has taken a turn for the worse and is dealing with septic shock.
I'm not particularly religious myself (spiritual/agnostic I suppose) but I can
honestly say that positive thoughts, prayer, whatever you want to call it does help.
I don't think I would be here today without that and I'm profoundly thankful.

So, with that being said, I'm sure I'm joining many others here in
sending positive thoughts and prayers for your brother, Ilya. Hope is
very alive, Danik :).

Please keep us updated and know we're with you and your family.

Hugs,

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1039
Joined: May 2012

Jim,

Yes, definitely Slavic. It is interesting to me as well. I am of Czech descent. The house where my great-great grandfather migrated from still stands today, 45 miles SW of Prague.

Elementary school was rough with my last name !

Danik, bless you and Ilya. May he please get through this !

max

danik's picture
danik
Posts: 6
Joined: Oct 2012

You are right Jim. We are originally from Russia...to be precise from Kazakhstan that used to be part of Russia. But we are Jewish by nationality.. agnostic Jewish.... I realized one thing that in hard times the real prayer comes naturally straight from your heart...no matter if one goes to the house of worship everyday or never still the prayer pours out of you like a spring water out of the mountain....
I guess if there is a G-d, He is only ONE so no matter which religion you belong to you still pray to the ONE and ONLY....
I should talk to the doctor shortly about Ilya's condition and hope to hear better news.....

I will keep posting updates and thank you, Jim.

NANCYL1
Posts: 228
Joined: Jun 2012

At the end of your post, you mention, "some kind of B-cell something." I was diagnosed with mild B-Cell Lymphoma this past spring and am being treated with infusions of Rituxan every six months for two years. After that time period, I would guess, more tests. I was told that this is not curable, but is livable. Don't know, of course, whether what you mentioned is the same.

I am sending very very positive thoughts your way.

Nancy

danik's picture
danik
Posts: 6
Joined: Oct 2012

I believe he does have a B-cell lymphoma.Thank you so much for sharing your story. I would really appreciate your sharing with me how you are doing. I am sure with today's technological developments the cure is just around the corner.
I pray he gets better so I could share your story with him.
Ilya, naturally is not a positive thinker and on many occasions I have tried to talk to him about the power of positive thinking but on most occasions he cut me short saying that it is better to keep your feet on the ground instead of the dream world we create...

Thank you, Nancy. I wish you only the BEST :):):)

NANCYL1
Posts: 228
Joined: Jun 2012

Hello Danik:

I went for a general checkup in January 2012, to my Internist. She did the usual blood test and found that my White Blood Cell Count was high. She sent me to an Oncologist/Hematologist at a Cancer Center nearby. There I had a Blood Test, CT-SCAN, PT-SCAN and a Bone Marrow Biopsy.

I started treatments in early May 2012: Infusions of Rituxan, which I understand is quite new. Rituxan, once a week, four weeks in a row, every six months for two years. Then, I would imagine more tests. I probably start my second set of Rituxan infusions around the end of November 2012. Rituxan is not heavy-duty chemo, but it makes me somewhat tired for a couple of days. Also, a bit nervous, since it contains steroids, at least for my treatment. Also, Benadryl, for those allergic to the contrast dye.

About a month ago I saw the oncologist and had a blood test. He reported progress. I have another appointment on October 19 with a blood test a few days prior. He will evaluate the bloodwork and probably set up a schedule for my second round of Rituxan treatment.

I hope they will find more treatment options and finally a cure for this dreadful disease.

Keep us all posted.

Nancy

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi i am truly sorry for what is happening to your brother and your of course which i have follicular b cell lymphoma stage 4 I researched and was told i have a 50 percent chance of getting a more aggressive cancer while i still this slow moving cancer it can share the same lymph nodes and or occupy others please don't let him give up hope encourage him to fight and he has you to help him through this. I had infections and was put int he hospital and that is when they found my cancer in April of this year i do not have any other cancer thank God but he can make it through it will be a tough road please feel free to ask me anything and i can answer you both are in my prayers and thoughts
Never give up
Trisha

1ladydiamond
Posts: 28
Joined: Oct 2012

I had the same symptoms doctors couldn't find anything doesn't show up in blood and finally i had gall bladder surgery a scan was done on my abdominal and find it after tests and bone marrow testing found " follicular b cell stage 4 lymphoma." I started taking rituxan and i myself had side effects to it but the doctor and nurses got me through it i have been taking it since April of this yr when i was diagnosed i had remarkable results i am not on a 8wk treatment every 8wks i take it now. But Rutixan is great. And i started juicing and feeling so much better I am sorry to hear about your brother but hope is not lost. He feels this way now but he will feel so much better after some treatments. He is in my prayers pls let me know exactly what he has. Now There are some down sides it affects the joints and heart valves long term i am told and read. If he has insurance of any kind i would suggest Cancer treatment centers of America check into that they have cutting edge technology also the Fred Hutchinson cancer centers there are clinical trails in in particular if for whatever reason they tell him he can not recover from this I tried to into it but you have to be refractory which means it has come back or at that end please check them out. Wishing you the best and my prayers are with your brother.
Trisha

1ladydiamond
Posts: 28
Joined: Oct 2012

Please check your in box i sent you a private message

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