Author Topic: Unfortunately our optimism was shot down!  (Read 299 times)

Carolina

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Unfortunately our optimism was shot down!
« on: February 08, 2020, 07:21:57 PM »
Dear Sjogren's Angels,

As some of you may remember my husband had surgery for colon cancer in early January.  We thought that was the end of the story.

Unfortunately he was found on pathology to have a rare and highly malignant and rapidly growing tumor type.  I know the terms, but I won't bore you unless you ask!  The tumor is a horror show and has invaded through the wall of his colon.

He also has been found to have a genetic defect for the process that corrects defects in DNA replication, which is why he has had three cancers diagnosed in the past four years.

We only found this out on Thursday, and Friday his oncologist called to ask for an appointment again next week.

The chemotherapy indicated is very serious stuff, usually producing peripheral neuropathy.  In addition in the case like his, there is usually treatment with chemo until remission or death. 

So, we're trying to take this as it comes.  My husband is busy giving lectures at our Senior Living Center, this week he talked about The Healthy Heart, and next week he speaks about the Corona Virus.

Tonight we played together with the Saturday night bridge group.  John is a substitute, and seems to enjoy it!  Tomorrow I'll play Scrabble with friends here.  It is good we're in a 'medicalized community' where there is great friendship and support and very knowledgeable and caring staff.

We've told our sons this grave news.  The genetic defect I mentioned is passed to each child on a 50% basis.  I don't know if they'll plan to be tested, but they sure better get regular colonoscopies.  The older son is 55, and the younger is 49.

So, it's always something!  And then it's something else.

I'll update on my Polymyalgia Rheumatica in another post.

Love, 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

irish

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Re: Unfortunately our optimism was shot down!
« Reply #1 on: February 08, 2020, 11:02:01 PM »
Carolina, I am so sorry to hear this news. I had lost track of when he had surgery. With all this to digest it is really great that he feels well enough to do the teaching and play bridge. Sounds like he is enjoying this more than he thought he would.

This new information will keep you busy making trips to doc for treatment and blood work. It is a heck of a way to fill up ones time. As with any bad medical news husbands process information one way and the wife and mother processes it another way.

Just to let you know that I understand....my hubby had one of those weird conditions with about 4   words in the name. It was discovered nu my immunologist when hubby was having a work up. He had autoimmune diseases also. Anyway, he had infections all the time and with his COPD the lung infections were ongoing. The conditions was genetic and very rare. The good thing was it didn't always kick in unless certain criteria were met. Hubby had low IgG levels also so that thickened the plot.

Soooo, I get you when you say you had to tell the kids. I have written information out for each of the 3 boys and told them not to worry about it unless they had health issues. However, They all need to educate their children. What will our kids do with ouot us? :)

Knowq that I will keep you both in my prayers as you deal with this. Hugs Irish

Linda196

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Re: Unfortunately our optimism was shot down!
« Reply #2 on: February 09, 2020, 03:53:58 AM »
Dear Elaine, i'm so sorry you received such devastating news, but you both seem to be handling it well, with incredible strength and grace. The fact that your husband is carrying on with his lecture series is admirable, and probably very beneficial to his audience; but also to himself and to you, as it gives you a taste of normalcy in this mess.

I'm so glad you've found the wonderful community you now live in, but always remember, though we've never really "met" we are your community as well, and for those days when face to face is difficult for you, we will be here, with a degree of anonymity and safety you might not find other places, so if you need to vent, we are listening.

I'm glad you are are able to prepare your boys, and give them a "heads up" at the same time. I know the last 8 months I was able to spend with my Dad, with all cards on the table so to speak, were probably the most rewarding time we shared, I just hope it's an indefinitely longer period for you.

These genetic factors, and concern for our offspring, can lead us to unnecessary guilt, and that's normal parenting, but please always remember, genes are more or less predetermined, and our children have been endowed with whatever we give them long before these things come to light, so there is or was nothing to take blame for. Unconditional Love is genetic, too!
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araminta

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Re: Unfortunately our optimism was shot down!
« Reply #3 on: February 09, 2020, 06:19:50 AM »
I was so sorry to read your post, Elaine.   It must be hard having your own health issues, and also having to stay strong for your husband.

It's good that you are in such a supportive community, and your husband does sound as though he is being as positive as anyone could be in the circumstances.  And I've always understood that mental outlook counts for quite a lot in any kind of illness.

As Linda has said, this is a kind and helpful forum, and you can come here at any time to talk and vent.   Many (maybe most) of us will have had experience of cancer in a relative or friend, and will have at least some idea of what you and your husband are going through.

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.

ohiolady

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Re: Unfortunately our optimism was shot down!
« Reply #4 on: February 09, 2020, 06:46:00 AM »
Elaine,

I am just so sorry you two have so much to deal with. Thank God you are in a community of support.
Sending you a hug!

Anna
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jazzlover

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Re: Unfortunately our optimism was shot down!
« Reply #5 on: February 09, 2020, 05:17:29 PM »
Sending hugs and love, Caroline!

We are here for you!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

irish

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Re: Unfortunately our optimism was shot down!
« Reply #6 on: February 09, 2020, 07:47:33 PM »
Just to let you know I am thinking of you today.

I have sen thinking about all that you have gone through the past couple of years and you have really had your hands full. I am so glad that you are in this new home where you get support and help if needed. Please keep us updated when possible. Hopefully your hubbies body will hand tough with this disease. He does sound like he is tough and can handle things. Continued support for you. Irish

Jenny

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Re: Unfortunately our optimism was shot down!
« Reply #7 on: February 10, 2020, 04:09:24 AM »
Elaine,  I?m so sorry you?re having to go through this. But I know we?re all grateful that you moved when you did. Keep the faith.
63 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
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Deb 27

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Re: Unfortunately our optimism was shot down!
« Reply #8 on: February 10, 2020, 07:22:00 AM »
Dear Elaine,

I am so sorry you are going through this. As always, you do this with optimism and strength. I am thinking of you and wishing the very best for you and your husband.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
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markt

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Re: Unfortunately our optimism was shot down!
« Reply #9 on: February 12, 2020, 02:59:13 PM »
Praying for you both; may you find some inspiration and peace while finding your way forward in spite of all that.

Mark

Carolina

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Re: Unfortunately our optimism was shot down!
« Reply #10 on: February 13, 2020, 07:30:02 PM »
The roller coaster continues.

Yes, the cancer isn't gone, and yes as a general rule his cancer is rare and aggressive.

BUT, he has this genetic defect in DNA replication repair, which combined with the EXACT stage if his cancer (II) actually has a much more optimistic prognosis. Not super good or anything.

But his oncologist took his case the the grand meeting of oncologists last week and in discussion found that there is a different treatment protocol for Stage II with the genetic defect.  So he told this to John yesterday, Wednesday.

This is why all the new information and testing available is allowing tailoring of treatment.

Bottom line:  some of the standard chemo treatments would actually be WORSE for his cancer, and there are some promising monoclonal antibody treatments in reserve when treatment becomes necessary.

Which will be dealt with down the road.

All of this in one week:  we thought the cancer was gone, it's not gone and it's terrible, and now it has features which make it more treatable.

Through all of this John is very calm and going about is life as usual.

Whew!

Elaine

« Last Edit: February 14, 2020, 04:29:48 AM by Carolina »
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

irish

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Re: Unfortunately our optimism was shot down!
« Reply #11 on: February 13, 2020, 08:22:45 PM »
Elaine, I am so glad that John is bearing up well and it sounds like you are doing pretty good also. Amazing what one can endure when the push is on.

Hope that you can get some rest and feel more rested. Don't know when the treatment will need to take place but hopefully you both can resettle after this stress and before the next push is on. Elaine, how have you been feeling, it is hard being a chronically ill spouse to a sick spouse. If you can understand that. Prayers are with you. Irish

Tharrell

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Re: Unfortunately our optimism was shot down!
« Reply #12 on: February 22, 2020, 10:10:49 AM »
I’m so sorry to read your sad news! Sending hugs and prayers!
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