CSN Login
Members Online: 7

Depressing

GKH
Posts: 288
Joined: Jul 2012

I am going thru a period of depression. I have new lumps and increased leg pains and headaches. Lumps are small and may well be from something other than lymphoma so I am waiting till my next infusion in January to get it checked out. My neurologist wants to do a spinal tap to see if lymphoma may have infiltrated my spinal chord and is causing leg pains. Also fighting with insurance companies. What a life. And no one else seems to understand my situation. I guess we are all ultimately alone.

Has anyone experienced severe leg pains with their lymphoma or had clones detected in their spinal fluid?

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Sorry to hear about the depression, I think we all go through it. I had two spinal taps, with abnormal cells, but none considered lymphoma. I had joint pains but not in the legs. It is true that no one understands, it's not intended, but comes off that way. Try to stay positive, I must say that a thousand times, but I feel it helps. I wish I could be more helpful....... Vinny

tall floridian's picture
tall floridian
Posts: 86
Joined: Dec 2011

GKH - we are never alone - God's always with us and we who have experienced lymphoma share a bond with you in prayer and in hope. Try to keep a positive attitude and fight fight fight the disease-it can be defeated by prayer and modern medicine so take it one day at a time and watch that depression disappear - we all have gone through it - and have come out stronger because of it. My prayers will be for you and your fight - GBU - Steve

po18guy
Posts: 237
Joined: Nov 2011

Although it may sometimes seem like it, we are never alone. He is our source of strength to persevere in the face of seemingly insurmountable odds. If we but ask for the strength, it will be given us. As well, our minds are worry factories. Yet, faith will drive fear away. At some point, all that we are facing will be behind us. It is only while we are undergoing a trial that we may feel defeated. Yet, the situation changes by the day. If our lives have ever been worth living, they most certainly still are. Perseverance is the key, and we will be granted that if we ask for it.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

Steve ("Tall"),

When I first looked at the photo next to your post, I mistook it as an angel: The green to the left, and the white to the right, I saw as wings.

So remarkable. I could not agree more with anyone than I agree with you and Po here, on this thread.  It was a spiritual moment for me.

max

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi GKH,
Getting depressed is pretty normal from time to time, but staying depressed for any length of time needs to be addressed. Are you taking any form of anti-anxiety meds? If not, you might want to talk to your doctor about doing so. If medicine isn't something you want to do, then maybe some counseling would help. New lumps,headaches,leg pain and dealing with insurance companies is enough to make anyone depressed, and I'm so sorry you are going through this. Please don't feel like your alone, we are always here for you. Give your doctor/clinic a call and tell them how you are feeling...waiting for Januarys appointment might be too long to wait. Keeping you in my prayers and hope things get better for you. Take care...Sue (FNHL-2-3a-6/10)

GKH
Posts: 288
Joined: Jul 2012

I take Cymbalta. Much better today. Went to the Doc today and he found a "palpable mass" in that spot on my left leg which has hurt so long. I have an MRI on Friday. Hopefully I can get to the root cause of my leg pain. He suspects a fatty tumor but it could be lymphoma. Depending on the MRI it may need to be biopsied. Its deep in the muscle. If its NHFL it will not change my prognosis or treatment. If its a fatty tumor its probably benign. He raised the possibility that it could be a second type of lymphoma. In that case its back to square one.

Thanks for all the messages.k

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

So glad you are getting things checked out sooner than later...good for you! Be sure to let us know how your doing. Best wishes...Sue
(FNHL-2-3a-6/10)

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Hi, GKH...

I'm hoping for the best in your situation and I'll send positive energy your way. Like you, I deal with the facts. I'm a researcher so analyzing data is what I do best. That said one's outlook in life, esp. in these unique circumstances, should be grounded in what we know, and we should allow for our intuition to help shape our decisions. In other words, it's not all about facts. That's because every case is unique. Not one person with NHFL is exactly the same. The doctors don't always have the facts or the answers so you find a balance with what your head and your gut are telling you.

Regardless of your prognosis, find ways to stay positive. I came up with a couple of mantras. The first one is to endure, persevere and rebuild, or EPR for short. The second one, which I repeat to myself when facing stressful circumstances is "Be strong...stay calm". It's simple and effective. It came in handy when I had to spend 27-minutes motionless under a MRI while suffering from post-LP headaches.

Find what works for you and know that you have support from this group! Hope you have family and close friends to help you through this.

JP

-DX: "Double-Hit" NHL | High Grade, Bulky Stage II
Translocations: BCL2 (common with DLBCL) & c-MYC (common with BL)
-Treatment: DA R-EPOCH & CNS Prophylaxis, Aug - Dec 2012 (6 cycles) + TBD

veedub's picture
veedub
Posts: 42
Joined: Jul 2012

one of the best mantras i know: "when life gets hard, you must have leveled up."

also " keep calm and carry on."

i had both of those put on tee shirts, just to remind myself.

 

best,

 

v

GKH
Posts: 288
Joined: Jul 2012

The "keep calm and carry on" is a great mantra. Thanks for sharing it.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

JP,

I have found your posts interesting during your time here. My undergrad major was Philosophy, and I focused then in the areas of logic and scientific methedology. I would say that, in most arenas, there is no such thing as "just facts," although of course there is empirically verified material, and other things that are (almost) purely speculative.  I like your slogans, which have a very "Marine Corps" sort of spirit about them.   My earlier career was as a fast-attack weapons systems supervisor in the Navy, and we delivered incredible sorts of "special people" to their destinations.  Somehow you remind me of the Seals and such I have met, perhaps unfairly.  

Calm can help one go months without daylight or a news report; it helped me go 16 days unable to breath on a ventilator after being run over by a car years ago, and 23 days with no food, "eating" through an NG tube. It allowed me to take a chest tube stabbed into my chest cavity by a surgeon through 13 rib fractures, after he warned me by saying, "I do not have time to deaden this area." (I remember it going through on the third thrust.)  I was awake once in ICU, and heard myself be Coded over the PA. It helped me through that, too.  It helped when an RN told me that he had found my kneecap in the pants leg that he was cutting off.

As I have mentioned in my bio, a favorite of mine  (a "mantra", if you will) is "While I Breath, I Hope."  To test whether a person can breath spontaneously, the respritory techs come in and turn off the ventilator, and watch to see if the patient can breath, although they try to limit this "test" to periods when the patient is asleep.  Sort of a "sink or swim" technique, although it is something that they must do.   I hope your treatment is all fully successful.

Still breathing,

max

.

GKH
Posts: 288
Joined: Jul 2012

Thanks.

GKH
Posts: 288
Joined: Jul 2012

Is amazing. Reminds of some grisly days in Viet Nam. Your courage and will to win is inspiring. Sometimes I think winning is just getting it over. Then I undertand and remember hat you went through and seems you have a very intact sense of humor and care about others. Thanks again Max.

Pappa Don's picture
Pappa Don
Posts: 39
Joined: Nov 2012

Hi GKH :
I think it is ok to be depressed sometimes. It is certainly understandable that one such as us can be.
I am taking Paxil for it. And I don' t know if it helps or not. I don't know if anything helps anymore.
I do know one thing I seem to be better off not resisting anything any more. I try to just go along with what is happening
And in a day or two things seem to be better or I am able to handle them better. Of course most of the time they are not
better. I just keep hoping. I do not know any thing else to do so I try to just hope and trust. I believe our stories have a happy ending.
This to will pass.
PEACE be with you
PD

GKH
Posts: 288
Joined: Jul 2012

Helpful. Its difficult for me as inthe past I had met few foes I could not bet or at least make a deal with. This is a whole new game.

miss maggie
Posts: 929
Joined: Mar 2010

I am so sorry you are depressed and feeling alone. I read your later post, and see your doctor has started you on Sybalta. We all feel depressed from time to time. You don't have to be dx with cancer. Being depressed for long periods of time, is not good when fighting cancer. I am glad you are feeling better 

A friend of mine had terrible leg pains which were unbearable. She had a MRI which showed Stenosis. I am not sure if the Stenosis was lumbar or cervical. I will look for your post to see what your dx is.

Postive thoughts and energy.  Love Maggie

GKH
Posts: 288
Joined: Jul 2012

What a day! I went in today to see onc and have #17 rituxan infusion. Dr. Found new swollen glands in neck and underarms. He did not chek groin but I know they are there too because I can feel them. Its all on the left side which is where the leg pain has been. My throat is red so we are going to wait and see what the situation is in 8 weeks. It may just be an infection but I don't think so. I get scanned again March 1 and next infusion/dr. Visit March 5. I may be seeking advice as to what some of you think is the best chemo regime beyond Rituxan monotherapy. I feel pretty good. My disdain for insurance companies keeps me going!

 

http://updates.clltopics.org/2979-cost-of-rituxan-hepatitis

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi,

 How many Rituxan infusions are you scheduled to have? My maint R is for 2 years, total of 12 infusions..(1 more in Feb) and then I'm done. I haven't talked with anyone that has had as many R infusions as you..(17)...wow! I was surprised when you said your doctor wants you to wait 8 weeks before addressing the issues with the new lumps. I think I would have a hard time waiting that long...how do you feel about it? I have no idea what treatment would be best after finishing the Rituxan...most likely your doctor will have something in mind, if he/she's a "good" doctor. Thanks for sharing back whats happening with you as it really helps to know you are ok. Please keep sharing, and I'll keep you in my prayers. Best wishes...Sue  (FNHL-2-3A-6/10)

GKH
Posts: 288
Joined: Jul 2012

22 total. Maybe more. I get 800 mg per dose. I had 8 weekly doses to start then one every 8 weeks for 104 weeks (2 years). Dr says we will continue after that though less frequuently if it continues to work.

i can wait. I plan to go to vegas to visit my daughter who just got engaged, time at the cabin and beach and spend time with my new grandson who lives nearby. With this indolent lymphoma it appears earlier treatment would offer no real advantage. If it transforms thats another story.

thanks or your comments. My very best to you.

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

My thoughts are with you.  Hopefully all of this is just an infection of sorts.

Please keep us informed and know we are here for you.

Hugs and positive thoughts,

Jim

GKH
Posts: 288
Joined: Jul 2012

I think my case is probably different than the others here. Thats a lot of Rituxan so I am a bit concerned about the long term effects. I am sure that if my lumps were larger he would recommend tretment now. I just hope they go away By March. If not I will face it head on.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

GKH,

If it is any consolation, rituxan has probably fewer side-effects than almost any other chemo drug, although it did make me feel like I had the flu all the time, which is difficult enough.  It can rarely have heart-related issues for a few patients also.  Some folks have an allergic reaction to it (I never did), although Benedryl or other drugs can usually overcome this.  I did 12 bags with my 12 infusions, but I do not know how many mL it consisted of.  I do recall that rituxan was always my first bag, and it took about three hours to finish on my motorized drip in the infusion center. (All five drugs took a little over eight hours on a normal day.)

Obviously, you have a huge ordeal to deal with at the moment.  I hope the responses here help in some way,

max

.

GKH
Posts: 288
Joined: Jul 2012

Rituxan dose is computed on body size. Standard dose is 375 ml for each square meter of skin area. In actuality they don't measure you but pull the dose the dose is taken from a chart based on height and weight. I am 6'3" and 195 pounds so I get 800 ml per dose.

I am very thankful for Rituxan. All the other options are less desirable.

GKH
Posts: 288
Joined: Jul 2012

My oncologist recommended Rituxan monotherapy because when diagnosed I had no bulky tumors - only swollen glands and bone marrow involvement. I have known all along that if I relapse he will have no choice but to bring out the big guns.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

GKH,

I see my onc next week, and will ask what my dose of rituxan was. I am just curious. I will share what I learn, but can say now that I am a small guy, 5'5".  I read that chemo drug doses are routinely changed "with every 15% change in weight," but am not sure.  I do know that docs, in severe cases, will somewhat "pour on" the medicine, if they feel it will help. Interestingly, some folks with exactly my same strain of HL got ritux only every other infusion, and some did not get it at all (rituxan is somewhat new by chemo drug standards at least, and abvd used to always be minus any ritux).  I am thankful for whatever good it did , killing those CD-20 cells.  As I said, I felt like I always had the flu, with muscle pain being fairly severe. I had to take Loritab routinely; no lesser pain med would touch it.

The "big guns":  Yes, avoid them if it is at all possible !

May you never need them,

Max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

I asked my onc last week what my rituxan dose had been, but he just told me the formula for calculating. He was busy sorting out what to do about my iron issue, and I understand that he was busy scheduling numerous appointments for me, and saw the question as a bit of a distraction. Anyway, I got whatever my body weight would multiply out as at the time.

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi,

I finally remembered to ask what my Rituxan mg was at my last infusion. 600mg. My weight fluctuates between 126 to 130 and has for years. Summer I weigh less...winter I put on a couple of pounds. My chemo nurse told me I have been getting 600mg since day one. The worst part of all of my treatments was when I had to take the 5 days of prednisone at 60mg per day. That stuff made me crazy!. The Rituxan is totally doable for me. Best wishes...Sue  (FNHL-2-3a-6/10-age 62)

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network