My wonderful husband diagnosed with Mantle Cell Wednesday and I am devastated

Bee521
Bee521 Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello to you all,

My husband was diagnosed on Wednesday, via excisionsal node biopsy by an ENT, with Mantle Cell. We are scheduled to meet with an oncologist next Tuesday to begin this journey together. I know he will need a PET scan and BMB to obtain staging.

He is 52, in great health (besides THIS!), no "B" symptoms whatsoever, no other enlarged nodes that can be felt, normal blood work, normal LDH and a clear chest x-ray in March. This is such a shock.

I have to admit I am writing because I need encouragement that it is possible to beat this, there is light at the end of the tunnel. I should NOT have gone on the intranet as the information is mostly outdated and very frightenting. I know that long term survivors are out there and I would so love to hear from you!!!!

I am also hoping to get some information regarding how to move forward. We live in the DC/Baltimore area. Can anyone tell me the name of a doctor who is an expert in mantle cell anywhere close to us? Maybe I am doing it wrong but I am not having much luck searching on-line. Should we go straight to John's Hopkins or start with the local oncologist for the staging testing? As this is such a rare type, I don't want to trust his health and future to someone who is not up on the latest treatments.

Finally, what can I do to help him now? Normally, we would both blast out of work on a Friday, hit happy hour, then a movie, go to the mountains for the weekend, go to concerts...I'm thinking we should just continue to do so. He feels great and is doing so much better than I am now.

I did see my PCP yesterday to discuss managing my stress. I need to be there for him and not a ball of anxiety. My BP was 185/134 when I went in and they nearly sent for an ambulance until I told them my situation. LOL! By the time we were finished, it had gone down 40 points.

Why I feel more comfortable talking with people I don't personally know now is beyond me but I do.

Many thanks to all of you in advance. I have a feeling we will be getting to know each other well...

Comments

  • vinny59
    vinny59 Member Posts: 1,036 Member
    #2
    welcome
    First off, welcome to the site. There are many wonderful people here to give support and information. I have had to different types of cancers in the past 7 years. I'm currently in remission for stage 4 B cell Lymphoma. I too had no symptoms what so ever. The treatment for mantle cell is different from what I recieved. What I can tell you is that, his age is in his favor. Don't stop living, my wife and I went camping a week before my port was put in! Lol... While the internet is great for information, it also has old information, don't take all the stat's verbatim. We have a lot of surviors on this site. Trust me their will be light at the end of the tunnel..... Tell him to listen to his body, and rest when he needs too... As far as not knowing anyone you will become part of our family forum! Stay in touch.... Vinny
  • illead
    illead Member Posts: 884 Member
    #3
    vinny59 said:

    welcome
    First off, welcome to the site. There are many wonderful people here to give support and information. I have had to different types of cancers in the past 7 years. I'm currently in remission for stage 4 B cell Lymphoma. I too had no symptoms what so ever. The treatment for mantle cell is different from what I recieved. What I can tell you is that, his age is in his favor. Don't stop living, my wife and I went camping a week before my port was put in! Lol... While the internet is great for information, it also has old information, don't take all the stat's verbatim. We have a lot of surviors on this site. Trust me their will be light at the end of the tunnel..... Tell him to listen to his body, and rest when he needs too... As far as not knowing anyone you will become part of our family forum! Stay in touch.... Vinny

    Hi Bee
    My husband was diagnosed a year ago in July with MCL. He is 63, 62 then. He was diagnosed with stage 4. That is not surprising tho, it is very common. Do not let that worry you. You have probably read that because the symptoms are so hard to recognize it usually is at stage 4 when diagnosed. Don't worry about finding it too late etc. There is no too late. MCL responds very quickly to chemo. My husband was diagnosed on a Tues. and by Thurs he could barely walk. He had been fatigued and no appetite for a time, but since he had been overstressed we figured that was the problem. He also did not have any lumps but his spleen was quite large (he didn't tell me about that at the time). The doctor figures he had it for a few years. He had a fairly new chemo, Bendamustine with Rituxan. It is much easier on the body than R-CHOP etc and is being talked about a lot as the chemo of choice for MCL. Bill (my husband) had no side effects and he did not lose his hair. By the time he got his first chemo he was in a wheelchair and his blood count was 1.6, and he had lost 50 pounds, he was white and looked like an old man and could barely talk. Our son came from NY, we are in CA, and we thought he was going to die. After his first chemo treatment he started feeling better and continued to improve. He started chemo in Aug '11 and had it every 3 weeks through January '12. In a few months he was his old self again. The chemo didn't stop us from any of our normal activities. He had a cat scan in Feb. and no cancer, then another one in July and still in complete remission. He feels better than he has in a few years and looks great. He is on Rituxan maintenance every 2 months and now we are contemplating a stem cell transplant which also has pros and cons, and so it goes. He's out salmon fishing today, and I'm doing this....what's wrong with that picture? :). I agree that the internet is a little outdated and it can be scary, but you are right, there are not many doctors who specialize in MCL. You have to be your own advocate. Our doctor says that there is a lot of research going on in Germany. He says that they feel many have had it in the past before it was discovered and that since they know so much about other NHLs, they are making a concerted effort with MCL. In my research, I have found a couple of doctors in the states who are very interested in MCL. One is Dr. Brad Kahl out of the Univ of WI. You can google the Carbone Center or Forward Lymphoma. Two other names are Dr. Andre Goy and Dr. Elliott Epner. Just google those names and you will get some sites. Also google Mantle Cell research in Germany and Mantle Cell Bendamustine. It's exhaustive and sometimes depressing but you need to be "in the know". If you are interested in Bendamustine or other info that you find, print it out and share with the onc. Please feel free to ask us anything I check back often or we can email. Please both of you know that there is plenty of room for optimism and you are right, you need to continue with your life. This road block will strengthen your love for one another and your compassion for others. There are always positives we can dwell on. Know that you are in our thoughts and please keep us posted. Becky and Bill
  • nikkig43
    nikkig43 Member Posts: 73
    #4
    Hello Bee521
    You sound just like me. My husband was diagnosed in Jan. ( Large B Cell). He had a swollen tonsil, but no other symptoms. Very healthy 51 year old. It was a complete shock! I took the news a little worse than my husband. I couldn't eat or sleep. I was very depressed. Joel was always calm and cool. I had to snap out of it though. I didn't want to make him feel like he had to comfort me, for goodness sake. After that, I cried in my car by myself. We decided that we wanted everyday life as normal as possible. He continued to work throughout treatment ( R-CHOP X 3 and radiation ). He's feeling great now, in complete remission.
    Once you get through the staging part and get treatment started, you will feel much better.
    I'm sorry that you and your husband are going through this.
    Stay positive. Everything will be OK. Take care, Nikki.
  • forme
    forme Member Posts: 1,161 Member
    #5
    Welcome
    Welcome Bee521

    You have landed in the right place for support, friendship and so so much more.
    You have found the best group of folks around. We may be spread all over the map, but yet, we are so close together.
    I agree with Vinny, keep doing what you love and what makes you happy.
    There may be days when hubby is tired and not hungry or just feeling bad, but that will pass.
    Have patience and be sure to take good care of yourself.
    Please feel free to ask anything at all. There will always be someone to answer your questions or just lend an ear and some virtual hugs.

    Hugs
    Lisha

    Started my cancer journeys in 1976, still kicking cancer to the curb..

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