Dearest Sjogren's Angels,
As you know I have been the only one in my family with a myriad of chronic conditions, requiring constant testing, treatment, and keeping me mostly exhausted and now disabled.
About three years ago my husband was diagnosed with Chronic Lymphocytic Leukemia, stage 0. The general prognosis was that the CLL wouldn't progress very far in his lifetime, that he would have few if any symptoms, and no treatment.
He has however felt more and more tired, and after a CT Scan today, his oncologist ordered a very expensive Chemotherapy medication: Ibrutinib. Because this chemotherapy is only ever administered orally it is not covered under Part B of Medicare, and comes under prescription coverage. The cost of the drug is over $11,000/month. The first month co-pay is almost $3000, after which he would be in the 'donut hole' and eligible for the catastrophic coverage rate of $569/mo.
This chemotherapy is usually taken regularly, for years.
I am reeling at all of this. That he is feeling so terrible. That he needs this or some other chemotherapy. I've been reading about his condition, and about the chemotherapy and the side effects. He takes care of me, and now he needs care and support. I want to be as kind and gentle with him as possible.
Today he had the CT scan and he is wiped out as a result. I had 3 MRIs and 2 CT scans in one morning in 2010, and since I'm always wiped out, I had no idea the CT scan (with contrast) could exhaust a person. Or maybe it is just that he has never had 'all these tests' and anything wrong with him like this. My mistake is in comparing what he is going through with what I've gone through. That isn't fair to him, and I know it.
I haven't had to be the caregiver, or supportive person. It is scary to have him unwell...and with cancer. It is so hard for me to say that word, angels. I just assumed he'd be one of the lucky ones. One of his older sisters has had this diagnosis for over 20 years, and she has no symptoms and no treatment, so I just assumed it would be the same for him.
I assumed he would just skate along, no problems. Now I am trying to take this a day at a time, and remember not to overwhelm him with questions and with research data. I've already found some clinical trials at Duke Medical Center...but he just doesn't need to hear all about this right away.
There is a forum for people with CLL and their family members, and I've already registered there. But really this is where I get my hugs.
Hugs, Elaine
I?m so sorry about your husband Elaine. It seems like so much is happening at once. It must be so scary to see him like that when he is always supporting you. Just take it a day at a time. I wish there was some way I could help, but we are here for you. Praying for you both.
I'm so sorry that you and your husband are going through this, Elaine. Please remember to care for yourself so that you will be better able to help your husband! We are here for you! Sending you warm hugs and prayers.
((Hugs))) That is all that I can say currently. Take it one step at a time.
Dear Elaine,
I hope you can feel the hug that I am sending to you across the internet. I'm very sorry to hear about your husband's health. You must both be overwhelmed and concerned about what to do now. Easier said than done, but take one step at a time and ask for help.
Please keep us informed, Elaine. We will all want to know how you are both managing. You are amongst friends.
Dear Elaine,
Hugs.
Sorry to hear this. My understanding from close friends who are doctors is that chemotherapy benefits do not out weight the risks once the patient is beyond 65 years.....
So my thought is that identify dietary and food supplements regimen to alleviate his condition. Strongly advise against chemotherapy even if it was available for free.
Thanks.
I'm so sorry to hear this, Elaine, and agree with others that you need to take especially good care of yourself at a difficult time like this. Are there friends or relatives who will be able to give you any support?
Blessings to you all. I do not know how I would have survived the last 8 years without all of you.
We do have our son (a psychiatrist) and his wife, (an occupational therapist) living very near us, so that is a big plus.
I thought the same thing, happylife, about age and chemo. My husband is 79 in May, and, as I said, his older sister has the same diagnosis from an even earlier age, and has had no treatment.
He would never consider dietary and food supplements as a way to deal with health issues. He taught and did immunology research at a medical school for 25 years, and has a completely medical approach to everything.
Today he had a call from the Pharmacy, informing him of the cost. I already had that discussion with the pharmacy last night, but he couldn't listen about it last night. He just now came in to tell me that he can't have chemo because it is so expensive. I was delighted to tell him I've already found a clinical trial at Duke he may be eligible for, and that of course there are other, equally successful chemo protocols that would be covered under our Medicare Part B. I printed out the information about the clinical trial.
He sees his oncologist tomorrow, and can discuss his options.
I have to work very hard not to overwhelm him with all my research. This is where you all come in, letting me vent without burdening him.
At first I was going to ask to go with him to his appointment tomorrow...but he is a very private person (I am not, obviously) and hates that I talk so fast and 'take over'. So of course, I will NOT go with him.
This is his issue. And he needs to handle it in his own way.
For me, even knowing that this is his issue, it is so likely I will 'interfere' except for your support and care.
Regards, Elaine
Sorry to hear about your husband's health issues, Elaine. I agree with others about taking care of yourself. The old saying "Don't set yourself on fire to keep others warm" makes sense. I'm glad you have support from your son and DIL and we can help be an outlet for you.
Would your husband be okay with you going to his appointment to just take notes? I know it can be hard not to ask questions or take over, but if you can promise to be quiet and just take notes, that could be helpful as a lot may be discussed and it can be overwhelming and hard to remember everything, especially as a patient in these circumstances.
Finally, have you looked into financial assistance for ibrutinib (inbruvica)? Here's information from the manufacturer website:
For patients with federally funded Medicare, Medicaid, or commercial insurance
Foundation support may be available
Patient Access Network Foundation
1-866-316-PANF (7263)
www.panfoundation.org
Leukemia & Lymphoma Society
1-800-955-4572
www.lls.org
Other resources:
Johnson & Johnson Patient Assistance Foundation, Inc. (JJPAF) is committed to providing access to medicines for uninsured individuals who lack the financial resources to pay for them. If your patient needs IMBRUVICA® (ibrutinib), and is uninsured and unable to pay for their medicine, please have them contact a JJPAF program specialist at 1-800-652-6227, 9:00AM to 6:00PM ET, or visit the foundation website at www.jjpaf.org to see if they might qualify for assistance.
Sending hugs and warm thoughts.
Wonderful that you found this other protocol/trial.
Sending good thoughts/hugs.
Elaine-
So sorry to hear about all this...there doesnt seem enough to say, except that I will pray for you and your hubby. You will be a great support to him, as you are to the rest of us on these boards. Take care of yourself.
Lori
I am so sorry to hear of your husbands illness, Life gets tough when both spouses are ill. It is good the son and wife are close. Also, hopefully there will be some home care outfit that can come in and help with household chores, cooking, cleaning etc. It pays to research this also as sometimes insurance will pay some of this.
Just to tell you that you should not be fearful of hurting your husbands feeling by goin with him to the doctor. I know it is hard cause I was the nurse and always was aking questions, etc and overwhelmed my hubby. At the same time we often talked about how it took 2 people to keep track of the stuff we could handle years ago when our health was better. There is so much instruction, explainations, etc that it is hard to keep up with.
When I went with my hubby I always felt like if I sat on my hands maybe mouth would slow down. That didn't work either. But my hubby did need my help and support so I always went. Often the stress and shock of increased health issues also makes us have a hard time keeping up with the info and remembering things. We wives just do what we feel we must do. Know I am thinking of you and your hubby and praying for good results. Irish
Carolina, I am sorry to hear of your husband's illness. I hope that the treatment will help him and fix him up quickly! You will be more of a resource and help to him than you know. It's good that you have children nearby who can help out and are in the medical field. Many thoughts and prayers.
Oh Elaine, when it rains . . .
In addition to checking with the Leukemia and Lymphoma Society I suggest checking with the American Cancer Society. My niece reached out to them last year after my sister's colon cancer, which we all thought had been taken care of via surgery, returned and metastasized. My niece has told me that ACS has been very helpful.
As well, too many people think of hospice as only for end of life, but it is not only for those at the end of life. The lives of my sister and niece have been made much better over the past six to nine months thanks to help from incredible hospice staff members.
My husband was in hospice and a prescription is needed from the doctor to be accepted into the program. In MN the criteria is that death is expected within 6 months. Many people are in the program who live beyond this and the doctor has to renew every 6 months. It may be different in other states.
It is a good program as people check in often and help where needed. Just taking care of the medications and ordering them and picking them up if needed is a huge help. However, when my hubby was in part of the contract and agreement was that he would not be going to the doctor anymore. The hospice has a doctor who addresses issues as needed. Having the nurses come often also head problems off and keeps things going smoothly.
My husband and I finally got some rest for some weeks before his symptoms increased and we were both kept busy with pain control. Going to the doctor so much during chronic and end of life illnesses is totally exhausting. We got a change to rest more in our recliners and watch some good documentaries that were spirit lifting and made us feel hopeful. Good luck to both of you. Irish
((Elaine)) - I'm sorry to hear your husband is ill. I know you depend on him to help with your daily needs.
I had replied to your post last night, hit the post button and poof, the post disappeared into cyberspace . . somewhere, not here!! Ugh, I hate when that happens!
Do you think your husband needs a second opinion?
I know your husbands appointment came and went already, did you end up going with him? I know it's hard for you not to be superwoman (although, the cape does look good on you!). ;)
As you know, you have to be careful when researching medical subjects on the internet. Each person is different and reacts to medicine and procedures differently.
It is so disheartening when medicines are priced so ridiculously high that a person can't afford to take medicine that might help.
Sending a long-distance hug as you and your husband navigate this bend in the road.
Bucky
Another supportive voice here. With a gentle reminder to take of yourself, too.
You are use to dealing the "administrative" parts of being really sick - the claims forms and authorizations, making sure you write down all the details from the doctor, and carrying a set of notes from one provider to the next.
Maybe explain how much you've had to do of that in the past, and ask your husband if he'd like any help or input for that part. Or if not, remind him you're available as a resource.
We're hear to listen. There's an old saying about shouting your troubles down a well. We've got a nice deep well here, whenever you need one.
Thanks so much for the advice and support. The appointment last week turned out to be a bone marrow tap, so it is this Wednesday that he will have his evaluation appointment on Wednesday.
I have been doing lots of research, and accessed his CT Scan results, on line. That information, plus what I've learned from the CCL site have more or less convinced me that he is still in the very early stages, and probably won't start any sort of chemo and won't be eligible (due to stage of his disease) for any clinical trials.
He thinks his tiredness is not due to his CLL progressing. I think it is from his age (79 next month) and his determination to push himself physically every day. So he is naturally exhausted, probably not from the progression of the CLL.
I won't offer to go with him (I have before) because he wants to be in control and guard information. So this is his issue.
One thing is certain, the very best drug is Imbruvica. This drug would cost us about $8000 a year, after insurance pays its part. If I am right about the current stage of his CLL he will NOT be eligible for clinical trials. There is a ton of literature about the criteria for treatment of CLL.
So we will see, after he sees his general oncologist. There is a CLL research physician at Duke Medical Center, recommended by many on the CLL website. My husband has shown NO interest in seeing her.
He likes his 'general oncologist' so he makes the call.
I'm dealing with so many issues in my own health, and am so exhausted and in pain most of the time, that I will leave this up to him (as if I had a choice!).
Again, thanks to all of you. Now that the test results are coming in, I'm much less worried for the state of his health.
But then, it's always something!
Regards, Elaine
Oh Elaine, wish both of you strength, rest when you can get it, and peace.
Dear Elaine,
I am so sorry to hear of this. It is so much tougher when it's two both in need of help. You both are in my prayers for God to have his arms around you both. I hope it gets what he needs, and that you both can find a place with all that is going on to have some rest. The cost of medication these days is just over the top. Hopefully, something will work out for all the medications you both need.
Hugs,
susanep