The Leukemia & Lymphoma Society Community : Discussion List - Caregiver Lounge

Looking for some real answers

communityreply@lls.org — Sat, 30 Mar 2013 23:36:34 GMT

First, God bless all of you. Your loved ones are so lucky to have each one of you.

Can anyone help me with a time frame. I need brutal honesty. My 90 year old grandpa was just diagnosed with aggressive Non-Hodgkins. He can't receive treatment so the doctor said "weeks or months". Another issue...since the beginning of November he has received transfusions every month because his hemoglobin falls to about 7.1. He just received 4 units & it went to 10.1 but that's the best it's been in months. We were also just told he has only 15 to 20% kidney function....also no treatment. I know that he has lived a long, wonderful life, so this is not a tragedy. However, it's still heartbreaking & none of us wants him to be scared or hurting. I think my mom & grandma are in denial because he looks pretty good right now & isn't in pain. They think he has about 6 months...I think that's unrealistic with all these things working against him. I think we need to be prepared. Can anyone here please help me? I need brutal honesty. How long do we likely have with him?

Thank you in advance,

Marci

Do I Push For A Second Opinion

communityreply@lls.org — Mon, 11 Mar 2013 16:07:30 GMT

My name is Amanda and my husband, Jamie was dx with CLL on 2/11/10 and is currently considered in Stage II. He has been in watch and wait with the only treatment being the removal of his spleen. He sees the oncologist every 3 months for bloodwork and a check-up. His blood work has looked pretty good. The numbers will fluctuate, but never anything major. For the last few months, he has been having joint and muscle pain. He saw his family doctor and she prescribed Lyrica. She has now tripled his dosage of it and he is still having a lot of pain. There are nights that he can't sleep because he can not get comfortable. He is still active and his xrays don't show any arthritis. We see the oncologist on 3/14 for his 3 month visit. Jamie is young, 36, and I sometimes feels like his oncologist doesn't take the dx seriously. As long as the bloodwork looks okay, he doesn't seem worried about any other Jamie's other symptoms or concerns. We sought a second opinion in the beginning just to confirm the dx and everything. He has not seen him in probably 2 1/2 years. I feel like if this next doctor appt goes like normal, then we need to seek a second opinion. Jamie is on the fence about it. I know that he's scared. I am the one that worries about appts, etc. This weekend he mentioned that he was worried about this appt because he feels so bad, his fatigue is so much worse, as well as the joint pain and his night sweats have increased.For him to mention it, if freaks me out. I don't want to push him, but I don't like to see him in constant pain. We both work full-time and have 4 kids. He stays home with the kids during the week and works on the weekends. I work during the week. I worry at times because I am 30 minutes away and our oldest is only 10. I'm not ready to see him have treatment, but I would like some answers. Do I need to push him to seek a second opinion or should I back off and let him do it on his own time? I know that if his bloodwork comes back with any bad numbers, then I will push. He is stubborn and if I push, it usually backfires. Plus, our marriage is rocky at the moment. I don't want to make things worse for us, but I want what is best for him. So, do I push him for the second opinion? I have thought of just making it myself bc I keep up with everyone's schedule. Just not sure if this is a time that I need to remember my boundaries or step outside of those boundaries. Any thoughts would be greatly appreciated.

I must be insane...

communityreply@lls.org — Fri, 08 Mar 2013 15:56:05 GMT

So a little background for those who dont know me...

I'm Lottie, I am 25, and my husband Nate is the patient. He is 26, and was dx 12/22/10 with ALL and just celebrated his 2 year transplant-versary on March 2nd. Nate has struggled to get back to normal physically and mentally. I have been caring for him, and our 20 month old daughter (I was preggo when he was dx), for a long time now. Nate has depression and bipolar disorder. Nate just recetly went back to work full time about 2 weeks ago, doing maintenance at a retirement community. And to help make ends meet financially and to dig ourselves out of debt, I have opted to look for part time work on weekends and a couple evenings a week.

So here's where I feel like I must be insane. I just accepted a job offer to be a caregiver. I will be working with a place called Home Instead, working with seniors in their homes. Doing stuff around the house, helping with some personal care, arranging meds, shopping, cooking, etc. I'm sort of excited about it because I like helping people and it's something with flexible hours. But I cant help but feel like a masochist or something for seeking it out lol. After years of physically and emotionally exhausting caregiving to my husband, now that he's better, I go out and find a job doing that for other people.

Caregiver PTSD

communityreply@lls.org — Wed, 28 Nov 2012 23:53:41 GMT

I am wondering if any other caregivers have ever felt like they had PTSD after your loved ones cancer?

My husband Nate was dx with ALL 12/22/10 at the age of 24, i was 23 and also 3 months pregnant. He had a SCT 3/2/11 and is doing well now.

My issues are around my reaction to anything I consider to be cancer related.

My daughter, who is just under 17 months, had her first real bruise a few weeks ago. It was on her shin, right where Nate had bruising before being dx. I started tearing up...my heart began pounding...I couldnt breathe. I stripped her down to nothing and looked her over for bruises or petechial rashes. I took her temp. All was normal. She was fine.

My mom has been having acid reflux and today they did a scope and biopsied a little part of her, saying they were being "overly cautious" and not to think it's cancer. I began to panic. Heart pounding, tears flowing, hyperventilating. She had to repeat the same things to me 4 or 5 times before i calmed down...about how the doctor said he's seen cancer many times and if he thought it was cancer he'd get it looked at immediately instead of saying the results would be back in a few weeks.

The other day I became convinced that i found a lump on my chest. i felt something once, and began poking and prodding so much that it bruised. I took myself to the ER to get it checked out because I was again panicking. My blood pressure and heartrate were through the roof. They wouldnt let me leave until it got better. Needless to say, there is no lump and nothing to worry about.

Any time nate says he isnt feeling well, i check his temp, look for bruises, ask if he has bone pain. I start to panic until i'm sure he's fine (which he is; he's had normal CBC results for about 6 months now).

So yeah...anyone else go through something like this? I have been told it is reminiscent of PTSD.

how to deal with frustration as a caregiver

communityreply@lls.org — Sat, 19 May 2012 01:22:54 GMT

Well as I'm sure you all guessed I am frustrated. My husband Nate is 26, he was dx with pre B ALL in December 2010 and had a SCT 3/2/2011, so he's about 14.5 months out. We have a daughter who is 10 months old named Kaya. Nate deals with pretty minor post SCT issues and his biggest complaint now is just the depression he has, which is terrible. He is starting electro convulsive therapy on Monday as medications are not working.

Anyways, yes, I am frustrated. He claims his "fatigue" is related to the transplant but I know it is the depression. He was over the SCT fatigue last August-ish and was happy and healthy. Then his dad died last September and he went off the deep and and has been sleeping more and more and more, more than what he did when he first came home from transplant. Nate goes to bed between 7-8 each night, and won't get out of bed until 12-1 the next day. There have been times when he has stayed in the bedroom for 40 straight hours, other than to come out and go to the bathroom and eat real quick. His therapost suggested he make a "schedule" to wake up each day at 10 and they got his whole day all planned out. He told me about it the other day after their session and was all gung hoe. He hasnt done it once, not once.

So yeah, the only being out of bed for 8 hours a day is really, really frustrating. On top of that, is his complete refusal to do anything, ANYTHING, with his daughter. He will not feed her. He will not read to her. He will not bathe her. He will not rock her to sleep. He will not play with her. He will not watch her when I run errands. He wants absolutely nothing to do with her. In the past couple weeks though I have just straight up refused to take her on a couple errands with me and just left her at home with him (only twice has this happened). He was pissed. I got home and she was crying in her play pen by herself while he played video games. When i got home he went back to bed to "lie down."

I am so frustrated. I am exhausted. I am angry and resentful and I feel like he is just acting like a lazy jerk who feels entitled to whatever he wants. I feel guilty about feeling this way because he had cancer and the transplant and all that. But seriously, I really don't think that can be his go to excuse to get out of anything and everything. I feel like he isnt acting like a husband and a father, or acting like a man. He's acting like a spoiled teenager who doesnt want to have to do anything. It's just frustrating and I don't know what to do any more because my patience it about to run out. Have any other caregivers dealt with a spouse who acted like this after? I am justat a loss....

what is your biggest challenge

communityreply@lls.org — Mon, 24 Sep 2012 20:50:48 GMT

I am doing a segment for our local news station to promote leukemia awareness. I am just wondering what obstacles you have faced or in what area do you wish you could receive more help? For my family child care is our biggest hurdle. We do not qualify for government assistance and although we do have many volunteers sometimes I do have to miss an appointment because we do not have anyone to watch our 3 kids. obviously we also struggle financially too because I can not work a full time job because I can not afford child care for the children. I do go to school (online courses) full time plus I have a part time job. It would be nice to have a support group in our local area. Just wanted some input from others in similar situations. If you could have a program in your local area what would you want it to include?

Awesome Follicular Lymphoma Patient Ed Symposium - Sept 15 - Live in Chicago & Livestreamed to Your Computer

communityreply@lls.org — Sun, 09 Sep 2012 04:51:08 GMT

Are you coming? Follicular Lymphoma: On the Road to Cure, a free patient educational symposium.

Saturday, September 15 @ Rush University Cancer Center and the Internet, 9:00 AM Central to 2:45 PM Central

If someone you love has fNHL, and you want to know more about:

best first treatments
is watch & wait is obsolete?
best options in relapse
exclusive new information about the latest research
Do supplements and lifestyle changes help?
Is Stress bad and how can cope?

4 Top Experts Share the Latest. Register to attend in person or over the Internet and receive supporting materials via email. http://www.road2cure.com Livestream will play from the website.

Back again. Husband has relapsed - AML

communityreply@lls.org — Tue, 13 Mar 2012 04:00:13 GMT

Hi everyone,

I am back - to what I remember 2 years ago was referred to as the 'sucky club.'

My name is Jennifer, and I am the mother of 3 young children (10, 8, 7 years), and wife to Ted, who is in his second battle with Leukemia.

Ted is 46 years old, a sergeant with the New York State Police, and one of the healthiest people I have ever known, with regard to activity level and diet.

Ted's first treatment included 3 rounds of high-dose chemotherapy and an autologous stem cell transplant (January 2010). He then continued with treatment with an additional 8 rounds of a clinical study chemotherapy.

He had been in remission, and was feeling and looking great for 2 years.

On February 13, 2012 he started to feel some pain in his jaw. The following day the pain was excruciating to the point that eating a banana was unbearable. I called his general practitioner that day, who diagnosed him with TMJ. No labs (blood tests) were done, but an X-ray that didn't show any irregularities was ordered. Ted also mentioned to his doctor that he felt some pain in his back, but added that it could be a muscle strain since he works out every day.

He was given some prescriptions: one for pain, and one for joint relief. He went off the pain medication after a few days, and once he did, realized that the back pain was now also rib pain. Being an optimist, he again chalked the pain up to exercise.

During this time, the jaw pain lessened, but then intensified a few days later.

On Wednesday, March 7, he complained to me about gum sensitivity. I said enough was enough, and we needed to contact his oncologist.

They ordered blood testing for the following day. Results showed a high level of WBC with 30% blasts, low hemoglobin, and low platelets.

He is supposed to begin a 30-day hospital stay for chemotherapy tomorrow, followed by an allogenic BMT once remission is attained (and of course, a donor found).

At times I feel very weak. Other moments I am surprised at how well I can pull myself together. Sometimes I feel like I should write a speech about hope and promise, other times I am cussing like a f*ck!n6 trucker because of our situation.

The kids are doing well. I do not know if they understand the scope or length of time Ted's treatment will be. They have asked good questions, the biggest being - 'Why daddy? He exercises everyday.'

I am stuck between wanting them to know what is ahead so they aren't surprised, and wanting them to just be......kids.....

Thank you for reading.

CMML and the drug Vidaza (Azacitadine in the UK)

communityreply@lls.org — Fri, 23 Sep 2011 22:43:59 GMT

Looking for some information please.

My mum was diagnosed with CMML Dec 2010. The drug Vidaza was finally released in the UK in Feb 2011 and my mother was one of the first to have it, she has now had 5 sessions and her bone marrow test last week has shown a 75% reduction in the leukemic blasts, which is wonderful news.

What I would like to know is will the sessions of this drug continue for the rest of my mums life or is it possible to stop it and start it again when the blasts increase.

The thought of 2 injections every day for 7 days every 4 weeks for the rest of mums life is not a good thought. bless her ... her weight is now 6 stone and there is no fat on her at all so the injections do cause some problems.

Thank you all in advance

Denine

The crazies are on a roll - it must be a full moon!

communityreply@lls.org — Wed, 11 Jul 2012 23:12:27 GMT

Normally, I would not consider myself to be a violent person. But today. . . . In my job, I work with the public. So a woman who frequents where I work, comes in today to tell me that she knows I have missed her because she hasn't been around for some time. (Frankly, I hadn't noticed, but whatever) So then she says, "I got to thinking about your situation, and your husband, and I got so depressed, and it weighed on me so, that my mental health broke down, and I had to be admitted to the psych ward." She co-opted my husband's cancer, so that it could all be about her. And it was all about her, too, because she regaled me with all the details for the next half hour! Wow!. . . just wow.. . .

Frequent question - How are you?

communityreply@lls.org — Mon, 26 Mar 2012 19:54:19 GMT

Everyone I meet always wants to know how my husband is, how is the treatment going, and lastly when all other questions have been asked and answered, the standard, "And how are you?" My stock answer is always the same - I'm okay. Because realistically people don't really want to know how I am. They need for me to be okay because no one else wants this responsibility. They need to know I am standing strong because they hope that will mean they can stand strong should, God forbid, anything like this would happen to them. But I often wonder, what would people say if I actually told them how I am? Even on these boards or in support groups, you really can never unload. Especially on these boards or in support groups, because everyone else here is feeling just as heartbroken, just as defeated, as you are. When you even touch on the depths of despair that you are constantly swirling in, the stock responses come pouring in, "I know just how you feel. . ." "God never gives you more than you can handle. . ." or "What you really should do is. . . " So I guess the lesson here is (of course, there would have to be a lesson in all this agony), that I will acknowledge for you, and for myself, that the world will revolve, the sun will rise, and you will perserve because there is no other option. But you are not okay. Something in your life has been lost, and shattered, and changed forever, and no matter what the outcome, it will never, ever, be okay.