Author Topic: Husband is ill! Now what?  (Read 1636 times)


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Husband is ill! Now what?
« on: April 09, 2018, 06:08:01 PM »
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

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Re: Husband is ill! Now what?
« Reply #1 on: April 09, 2018, 06:32:22 PM »
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.


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Re: Husband is ill! Now what?
« Reply #2 on: April 09, 2018, 06:37:28 PM »
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.
39yo; primary Sjogren's 6/2013; SSA and SSB positive; ANA positive 1:320

Joe S.

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Re: Husband is ill! Now what?
« Reply #3 on: April 09, 2018, 06:59:19 PM »
((Hugs))) That is all that I can say currently. Take it one step at a time.
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Re: Husband is ill! Now what?
« Reply #4 on: April 09, 2018, 10:19:37 PM »
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.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis


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Re: Husband is ill! Now what?
« Reply #5 on: April 10, 2018, 12:14:00 AM »
Dear Elaine,


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.



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Re: Husband is ill! Now what?
« Reply #6 on: April 10, 2018, 04:15:19 AM »
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?
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.


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Re: Husband is ill! Now what?
« Reply #7 on: April 10, 2018, 08:13:45 AM »
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

Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3


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Re: Husband is ill! Now what?
« Reply #8 on: April 10, 2018, 10:36:24 AM »
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)

Leukemia & Lymphoma Society

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 to see if they might qualify for assistance.
« Last Edit: April 10, 2018, 10:45:59 AM by SunshineDaydream »
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Re: Husband is ill! Now what?
« Reply #9 on: April 11, 2018, 05:13:32 AM »
Sending hugs and warm thoughts.
Male 49 y/o; Undergoing Primary SJS diagnosis process; Cevimeline, Ubiquinol, Restasis


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Re: Husband is ill! Now what?
« Reply #10 on: April 11, 2018, 05:30:27 AM »
Wonderful that you found this other protocol/trial.

Sending good thoughts/hugs.
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.


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Re: Husband is ill! Now what?
« Reply #11 on: April 11, 2018, 11:29:36 AM »
  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.

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Re: Husband is ill! Now what?
« Reply #12 on: April 11, 2018, 09:00:21 PM »
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

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Re: Husband is ill! Now what?
« Reply #13 on: April 13, 2018, 10:56:26 AM »
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.
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Re: Husband is ill! Now what?
« Reply #14 on: April 13, 2018, 05:19:04 PM »
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. 
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.