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Finally we have all the info on DH

K

KathyC

Guest
#1
Such a long day yesterday. What we learned is that DH has B-Cell lymphoma throughout (not 100%) but most all of his lymph nodes but it has NOT made it into the bone marrow or any major organs yet. However, Pet Scan showed numerous "hot" spots throughout his entire body. Dr has already been consulting with Mayo on this & the consensus is that all this time this has ben there but for some reason was just bubbling under the service & just didn't test out as lymphoma. As many of you probably know, this is considered a very treatable cancer. Dr had said prior to pet scan at least stage 3 & probably stage 4 but at this time is keeping us at stage 3. However, the extremely severe Crohn's definately complicates things so we are walking a tightrope here. Dr took a very long time with us yesterday & took a great deal of the guilt I was carrying about not stopping DH immune suppressing drugs during that 2 mo wait & see period. First of all, they did the needle biopsy (not recomended for detecting lymphoma) because due to the location of the mass at that time, it would have involved some real surgery to reach the spot & with no immune system, we were told a yr ago that if he had surgery he would have a more difficult time healing & would be more susceptable to infection & considering all the areas in the past that have looked like cancer but tested out negative they went with a computer guided needle biospy rather than surgery. And NO they would not recommend taking the 2 drugs in question if you have cancer, but the dr says because of so many months of those treatments his body's immune system was already so depleted that the fact that we did continue with them when in fact it was a cancer DID make some difference in the progression but NOT a major difference. He asked how the drugs had worked for the Crohn's & we said it had been amazing for his Crohn's health. Then he asked how the Crohn's is now that we have been off of those meds for just 2+ wks & DH had to say that many of the old symptoms are already back. So, as was pointed out to us, we had no GOOD choices to choose from. It helped me so much as I felt I had done DH so much harm by continuing those drugs for that 2 mo. As far as treatment, it starts Monday. The question will be how the treatment affects the Crohn's. Most people starting on chemo get one mega shot of something but because of the Crohn's he has to go in 10 days in a row (including Sat/Sun) & get an injection in his stomach! As you can imagine, my big guy that freaks at the thought of needles is REALLY freaking about this as he thought that having the port put in on Thurs took care of ALL needle sticks. The plan is for approx 5 mo of treatment with a Pet Scan every 2 mo; the main thing we have to watch for right now is internal bleeding from his Crohn's. And people I don"t know why, but I'm thinking it has to be all of the prayers that people have sent out, after wks of DH being sooo sick that he could barely get out of bed & the loss of about 33 lbs he has suddenly begun to feel a little better--not good by any means but also not feeling like he is at death's door. He is extremely pale but that awful gray color he had is gone & for the last 3 days he has been able to EAT solid food!!! Although retired police, he still worked for the city in animal control chasing the 4 legged dogs instead of the 2 legged ones but that is now over. Dr says he cannot work with animals due to the risk of infection (probably shouldn't have been before now) & said to make sure all of our pets were immunized. So many people have said we should go to Mayo especially due to his complications of having the Crohn's but at this time we feel very confident with this dr & we were quite surprised that he had already consulted with Mayo before our appoint. And, although we had a scheduled appoint for Fri, his office called Wed & wanted to change it because dr was not going to be in on Fri. But due to tests/port he had scheduled for us we couldn't come in any earlier this wk so he came in on Fri just for us. Are we still stressed? Absolutely, but who isn't when facing cancer. However, it is a relief that after nearly 18 mo we finally know what we are dealing with & we are at last getting treatment. And thank God that after several wks of being sooo sick these last 3 days, without any treatment, he has begun to feel a little better & get some food into him. A big thank you to each and everyone of you for your thoughts and kind words. I've received so many PM's offering support. We've got a long road ahead of us & with this Crohn's I'm certain we will face our share of bumps along the way. I've been with this man for almost 35yrs now & although I don't believe the word "cure" is in our future, I told him we will learn to LIVE with it just as we have with the Crohn's which was diagnosed a short 3 mo after our wedding. I told him when we go into remission it will undoubtdely rare its ugly head again but just like the Crohn's we will beat it back down as we have so many times over the yrs. Again I thank you so much for your support. I know there are many of you out there facing your own battles & I have been MIA these last couple of wks but I'm back now & all of you have never been far from my mind.
 
G

GloBug

Guest
#2
The devil you know is so much easier to deal with than the unknown. I am glad that DH got his diagnosis, and it sounds like his doctor is certainly doing all he can, and willing to do even more, to help DH in his fight. It will be tough, but it will be worth it. Continue to take care of yourself, so that you can take care of DH, he's going to be relying on you more than you can know. Prayers will continue as long as they are needed.
 
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popcorn

Guest
#3
You had a day of it yesterday! But you have some answers now. And it is great that DH is feeling a bit better Sounds like you have a considerate team working with you and for you.

I will keep you both in my thoughts and prayers.

Liz
 
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ShipMaven

Guest
#4
Kathy - through the thick and thin of this, it appears you definitely are making progress. While your beloved DH has a long road ahead, it IS a treatable form of cancer - I pray that all goes well in his treatment, and I pray for strength for you both. =hug
 
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Beryl

Guest
#5
Kathy...my continuing prayers and best wishes! I read on Maw's Office Ramble that the sun is shining for you today...I hope it always stays bright. =hug=hug=hug
 
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Calgon1

Guest
#6
Kathy, I know that you are passing on to DH the concerns of all of us for both you guys. Along with prayers for the two of you, we're also pulling for your medical treatment and spiritual counseling teams. This is going to be a long and, sometimes, very tough fight. However, I have faith that, as a group, we can, and WILL win. Yes, "we". I would like to think that the C@ crew is also part of your team...
 
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mrsrocster

Guest
#8
Whew Kathy! Now we can breathe a bit and dig in for the treatment schedule. I'm not very eloquent with words, and I certainly can't add much to what has already been said, but you know that we are all here for your and your DH.

Don't you wonder if your doctor also practices psychiatry or psychology in order to help you with the guilt you were feeling? Its great that he came in on his scheduled day off, thats a wonderful measure of his compassion and professionalism (he's a keeper!). While you may have to visit the Mayo Clinic at some point, the fact that your doctor consulted with them first was great!

I'm glad your DH has been able to eat, that is a big boost to his mood and strength!

So, the plan is he goes in for 10 days in a row, then how much time off before going back for another 10 day set?

Take care!
Michelle
 
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audrey

Guest
#9
prayers will continue. I have a friend here in calif that has cancer and she is working with her doctors and they are in touch with dr at city of hope and the doctors there are telling her doctors how to proceed so she does not have to go there for the time being.
 
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elliottsmama

Guest
#10
Good luck in your battle. After over 6 years with Elliott's cancer, it is a BATTLE. But he is living proof that although it is not fun, it is something you can overcome. Even if it is over and over. If you have any concerns that I might be able to help you with, please do not hesitate to pm me. I have learned a lot over these years.
God Bless
 
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JacquieP

Guest
#11
Whew! Am I ever glad to hear the bone marrow is clear. That's wonderful news!!! Prayers are still on the way, for both of you and your entire health care and support teams.
 
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korinalacount

Guest
#12
Kathy,Maw reminded me to come over here today,such a battle the 2 of you are doing,and it sounds like you will be the winner,much love,hope,and wellness coming yuour way soon. Hugs,John and Korina
 
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Lisa63

Guest
#13
The best words I've heard in a long time: "As many of you probably know, this is considered a very treatable cancer." Thoughts and prayers continue.
 
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reggae

Guest
#14
Prayers and good thoughts for your husband and all of your family, Kathy....May his healing come quickly.
 
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H2O babe

Guest
#15
Your hubby remains in my thoughts and prayers but could I ask one favor?? I pray for him as "Kathy's hubby" and even though I don't know either of you I would enjoy using his first name or a nickname. Thanks much - hugs to you both and may you tackle each day as it arrives.

K.
 
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Cruise cutie

Guest
#16
HUGE hugs and prayers, and they will not stop.. and when you get time to update us that's terrific..but we'll be here , and always around.. and don't doubt our faith for miracles.. we really pull for the best always..Stay strong, be good to "you" please as well..:daisy..Joanne
 
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KathyC

Guest
#17
So used to using DH but H2OBabe his name is Mike and I just want ALL of you to know that although he is still feeling very sick that something is happening here & I think it is all of you & our neighbor who put us in their prayer chain last wk. As you all know, Mike has been unable to eat for nearly a mo now & has lost 30+ lbs. He would think he was hungry for something & try to eat it but couldn't get it down or he would eat & vomit it up later so he has been surviving on mostly liquids, pudding, sherbert, etc. Well, for some unknown reason, beginning last Wed he felt like eating & to our surprise has been able to eat solid food every day for 5 days now! He has not gained any weight but he has held his own & not lost any these past few days. We know he is really sick & since we don't start treatment til tomorrow I feel something is happening here & I truly believe it is because of all of you. You can't imagine how much better it makes me feel just seeing that he is eating. Thank you so much. Kathy
 
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ShipMaven

Guest
#18
That's excellent news, Kathy. Perhaps the combination of prayer and the knowledge of an actual diagnosis instead of constant question marks has subconsciously eased Mike's nerves enough that he can tolerate some solid food. May this step forward continue, whatever the reason(s)!
 
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Corky

Guest
#19
Kathy - just getting on and reading your news. I am glad they finally found out what is wrong with Mike and that now the doctors can decide on a course of treatment. I am also thrilled to hear he is now able to eat. I will keep him my good thoughts and I send the best of wishes that he is soon feeling much better. =hug