Another person diagnosed with NLPHL

2

Comments

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    edited September 2017 #22
    MDA

    when I was at MD Anderson I was assigned a patient advocate/social work to help with things like this. If you have one you may want to contact her/him for assistance. The young lady I had was very helpful in navigating that confusing, busy (at least to me) place.

  • Lixx
    Lixx Member Posts: 21
    Keep your head up skaterdad.

    Keep your head up skaterdad. I recently got diagnosed with NLPHL as well and start R-ABVD on 10/6 for 6-8 months. Life changing to say the least isn't it? One day you're fine and then you have your work cut out for you physically and mentally. We'll get through this, take solace in its highly treatable.

  • skaterdad
    skaterdad Member Posts: 16
    Sandy Ray said:

    MD Anderson

    Hey Skaterdad,

    Yes my last PET scan showed activity. My Oncologist wanted me to go back to MD Anderson since activity was spleen and my spleen is still enlarged from original diagnosis. They originally scheduled for 10/20/2017. I sent the Dr an email and they rescheduled for 10/12 and would have been sooner but that is his first day back from vacatIon. Just let them know you want a second opinion and your Oncologist is wanting to start treatments asap! However, having the port in a week or two is good before first treatment. Will give it a little while for swelling to go down before they access it. Also this type of Lymphoma is usually indolent so not super big hurry. 

    I had 6 rounds of RCHOP as well. It is not fun but also not unbearable. Stay on the forum and you will have lots of people here to help you through.

    Praying things go well for you.

    Sandy Ray

    Thanks Sandy Ray,

    Thanks Sandy Ray,

    Quick question for you. Do you like who you are seeing at MDA for NLPHL? I was looking at going to Michelle Fanale but she is booked until the 16th of Oct. They offered an earlier slot with "Fredrick Hagemeister".

  • illead
    illead Member Posts: 879 Member
    Sandy

    Bill sees his Dr at MDA on the 12th also, his appt is at 1:15....small world

    Becky

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    illead said:

    Sandy

    Bill sees his Dr at MDA on the 12th also, his appt is at 1:15....small world

    Becky

    10/12 at MD Anderson

    Illead,

    My Dr is Hun Lee and we meet I think at 2:30. Maybe we will see you. That would be neat. My wife will be with me so I changed my picture today to a family photo.

    I am going to use it as a mini vacation since I am feeling so good at the moment. Hoping my scan was a false positive. I know it happens just not sure the percentage. There is an article I found of a study that showed that can happen with Rituxan. Dr. Lee also emailed me to let me know it was possible. When I was diagnosed I was feeling so bad taking Chemo made sense to have a chance to feel better. I have felt so good lately it seems odd if I have to take Chemo to make me feel bad. The irony of it all.

    Anyway I will face it as it comes and enjoy the good days for now. 

    Sandy Ray

  • PBL
    PBL Member Posts: 333 Member
    Fingers crossed

    Sandy,

    I sure hope it is just a false alarm. At any rate, it is encouraging that you are feeling good.

    Will keep expecting to read some good news from you.

    PBL

     

  • skaterdad
    skaterdad Member Posts: 16
    edited September 2017 #28
    Sandy Ray said:

    10/12 at MD Anderson

    Illead,

    My Dr is Hun Lee and we meet I think at 2:30. Maybe we will see you. That would be neat. My wife will be with me so I changed my picture today to a family photo.

    I am going to use it as a mini vacation since I am feeling so good at the moment. Hoping my scan was a false positive. I know it happens just not sure the percentage. There is an article I found of a study that showed that can happen with Rituxan. Dr. Lee also emailed me to let me know it was possible. When I was diagnosed I was feeling so bad taking Chemo made sense to have a chance to feel better. I have felt so good lately it seems odd if I have to take Chemo to make me feel bad. The irony of it all.

    Anyway I will face it as it comes and enjoy the good days for now. 

    Sandy Ray

    The marathon

    Hi Sandy,

    Good luck at MDA! I'm all for false positives these days :) Sometimes it is nice to be on the right side of the probability distribution. You are right, the Chemo-to-feel-better concept is something I am also feeling too. It's a strange idea that feeling quite bad for a few months can make you feel much better for many years. I am starting to get used to it though.

    On the good news side, my bone marrow is not involved (yay!) and my Dr. at MDA just informed me that they moved my appointment up to Oct 9. We will arrive in Houston on the 8th.

    On the unfortunate news side, they do think my spleen is involved, and recently my liver numbers (LDH, AST, ALT) are off the charts (note: I haven't started treatment yet). I think this might have been what got the MDA folks to move up my appointment.

    The marathon continues...

  • skaterdad
    skaterdad Member Posts: 16
    edited September 2017 #29
    Sandy Ray said:

    10/12 at MD Anderson

    Illead,

    My Dr is Hun Lee and we meet I think at 2:30. Maybe we will see you. That would be neat. My wife will be with me so I changed my picture today to a family photo.

    I am going to use it as a mini vacation since I am feeling so good at the moment. Hoping my scan was a false positive. I know it happens just not sure the percentage. There is an article I found of a study that showed that can happen with Rituxan. Dr. Lee also emailed me to let me know it was possible. When I was diagnosed I was feeling so bad taking Chemo made sense to have a chance to feel better. I have felt so good lately it seems odd if I have to take Chemo to make me feel bad. The irony of it all.

    Anyway I will face it as it comes and enjoy the good days for now. 

    Sandy Ray

    Overlap

    I just noticed that you said you will be at MDA on the 12th. Currently we are planing to leave on the 10th, but I will post on here if we are still in Houston on the 12th, it would be cool to chat.

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    skaterdad said:

    The marathon

    Hi Sandy,

    Good luck at MDA! I'm all for false positives these days :) Sometimes it is nice to be on the right side of the probability distribution. You are right, the Chemo-to-feel-better concept is something I am also feeling too. It's a strange idea that feeling quite bad for a few months can make you feel much better for many years. I am starting to get used to it though.

    On the good news side, my bone marrow is not involved (yay!) and my Dr. at MDA just informed me that they moved my appointment up to Oct 9. We will arrive in Houston on the 8th.

    On the unfortunate news side, they do think my spleen is involved, and recently my liver numbers (LDH, AST, ALT) are off the charts (note: I haven't started treatment yet). I think this might have been what got the MDA folks to move up my appointment.

    The marathon continues...

    Spleen involvement

    Yes my spleen was extremely enlarged and has still not gone back down. I think Max told me it took his 6 months after treatment to go back to normal size.

    My Pet scan appeared to show bone marrow involvement but bone marrow biopsy was negative. This was on original diagnosis in March.

    Just hang in there I have high hopes for you . Saw your earlier post about my Dr. I have had a 10 minute visit with him back in March . He confirmed the treatment my Oncologist here was going to give me and the rest of his conversations have been with local Oncologist. So I would be hard pressed to give any real opinion on him personally. The one value about MD Anderson is that the Doctors there confer with one another especially on difficult cases. I may have a better feel after this visit. They also confer with your local Dr so you can have your treatments at home and come back if needed.

    We arrive the afternoon of the 11 and are staying in the medical district.

    Sandy Ray

  • Evarista
    Evarista Member Posts: 325 Member
    Good luck at MDA

    Sandy, Skater, and Bill: thoughts are with you this week and hope all goes well for each and every one of you at MD Anderson.

  • skaterdad
    skaterdad Member Posts: 16
    edited October 2017 #32
    Post-MDA visit summary

    Evarista, I am very happy with the results of my MD Anderson visit. It was fun to meet an oncologist that geeks out on NLPHL. I am happy to report that the Dr. confirmed the diagnosis and the treatment plan (6 rounds R-CHOP). It sounds like my spleen being enlarged is not unusual for advanced stage disease.

    The only fly in the ointment is the fact that my liver enzyme numbers are not low enough to run chemo yet. In the last month they shot up to at most 9x the maximum normal range. I have a liver biopsy scheduled on Friday to get to the root of it. The good news is as soon as I stopped taking my medication for another autoimmune issue I have, all of a sudden the liver numbers started dropping (highest number was almost cut in half in one week). This could indicate drug induced autoimmune hepatitis which is moderately annoying. I really wish I was still taking those drugs because the symptoms of my other autoimmune thingy are back, but hey you can’t win them all :) I hear that I will get a break from the symptoms once the chemo starts because autoimmune stuff tends to be shut down by the steroids.

    I also had a great visit with a social worker at MDA. She gave us some great advice for how to talk about cancer and the treatment with our 3-year old.

    After some lovely Texas BBQ (Goode Company near MDA) I am excited to head back and get started with the treatment.

    Sandy, unless you will be in George Bush airport around noon tomorrow I think I will miss you. I hope your MDA visit goes as well as mine did.

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    skaterdad said:

    Post-MDA visit summary

    Evarista, I am very happy with the results of my MD Anderson visit. It was fun to meet an oncologist that geeks out on NLPHL. I am happy to report that the Dr. confirmed the diagnosis and the treatment plan (6 rounds R-CHOP). It sounds like my spleen being enlarged is not unusual for advanced stage disease.

    The only fly in the ointment is the fact that my liver enzyme numbers are not low enough to run chemo yet. In the last month they shot up to at most 9x the maximum normal range. I have a liver biopsy scheduled on Friday to get to the root of it. The good news is as soon as I stopped taking my medication for another autoimmune issue I have, all of a sudden the liver numbers started dropping (highest number was almost cut in half in one week). This could indicate drug induced autoimmune hepatitis which is moderately annoying. I really wish I was still taking those drugs because the symptoms of my other autoimmune thingy are back, but hey you can’t win them all :) I hear that I will get a break from the symptoms once the chemo starts because autoimmune stuff tends to be shut down by the steroids.

    I also had a great visit with a social worker at MDA. She gave us some great advice for how to talk about cancer and the treatment with our 3-year old.

    After some lovely Texas BBQ (Goode Company near MDA) I am excited to head back and get started with the treatment.

    Sandy, unless you will be in George Bush airport around noon tomorrow I think I will miss you. I hope your MDA visit goes as well as mine did.

    Airport

    Skaterdad,

    Well I will be through earlier in the morning . So looks like we will just miss each other. Keep us updated though. Yes on the spleen. Mine was enlarged and still is. Wishing you the best,

    Sandy Ray

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    Evarista said:

    Good luck at MDA

    Sandy, Skater, and Bill: thoughts are with you this week and hope all goes well for each and every one of you at MD Anderson.

    Evarista

    Thanks so much.

    Sandy Ray

  • illead
    illead Member Posts: 879 Member
    A Big apology

      Hi Sandy Ray, 

          I feel so bad and embarrassed for not answering until now, I monitor the forum everyday but for some reason I missed the majority of this thread and did not  see your answer to me, so I didn't want to seem insistent.  We are in the hotel this evening and I saw it and I am just sick I messed up! We were at  the Lymphoma area  from about 1 o'clock until four. After the doctor visit, Bill had to get a neophogen shot  and then we had to wait for an answer about another medication. His name was called several times, William Hampy, and we even changed seats a couple times.  We are leaving on Saturday, if you are still around tomorrow we are near the NRG center or can take a shuttle to M.D. Anderson if you are near there ,  no pressure.  You can also private message me if you want. We hope you got some good news today, I know you must have been worried.  Very good news for you  skaterdad.  We had good news also, Bill is in remission again but he will be on revlimid (pill) and rituxan but off of velcade. Thank you also Evarista for your well wishes. Again  I am so sorry you guys for my seeming uncaring. My best, Becky

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    No worries congrats Becky

    Becky,

    No worries I also check the forum frequently but just checked this morning. I wish I had seen this earlier would have been great to meet you guys. Fortunately I also got good news. I am still in remission and MD Anderson did a PET scan and got my best report since all this started. We were supposed to be here all day Friday but after the good news the first thing I did was change my flight so I could get Home to see the grandchildren this weekend .Headed to the airport at 7:00 a.m. be home for lunch! 

    Congrats to Bill! Maybe someday we can meet in person but if not hope to keep up with you guys on the forum.

    Sandy Ray

  • Marigold2015
    Marigold2015 Member Posts: 4
    edited October 2017 #37
    Indolent lymphoma

    Hi there,  I'm new to this as well.  I'm one year into my immunotherapy(rituxan) after 6 rounds of R-CHOP. I have children ages 2 & 5. My daughter was 9 months when I got diagnosed with follicular lymphoma, stage 1. It is a scary thought think about your children in this situation.  My care team opted for an aggressive approach to my lymphoma as it had transformed into a large diffuse b-cell. I went 5 years, very ill,  diagnosed with fibro and passed off as a busy working mother.  You will make it through this,  it is so scary,  but I have had good results from my treatment.  My tumor was 19cm (wrapped around my kidney/ureter) and at last CT was 8cm. You will make it through this!  My advice is to take short term disability if you have it so you can rest; part of the recovery from cancer is rest and and lessening the stresses in your life. Not to mention all of the germs you will be exposed to at school and your kids coming home from school! When you complete treatment make sure you see a naturopath to get you set up on some serious immune boosting vitamins.  I drink all kind of herbal teas,  take emergen-c everyday.  You've got to keep your immune system up and protect yourself. Also,  don't quit skateboarding!!! 

  • illead
    illead Member Posts: 879 Member
    Sandy Ray said:

    No worries congrats Becky

    Becky,

    No worries I also check the forum frequently but just checked this morning. I wish I had seen this earlier would have been great to meet you guys. Fortunately I also got good news. I am still in remission and MD Anderson did a PET scan and got my best report since all this started. We were supposed to be here all day Friday but after the good news the first thing I did was change my flight so I could get Home to see the grandchildren this weekend .Headed to the airport at 7:00 a.m. be home for lunch! 

    Congrats to Bill! Maybe someday we can meet in person but if not hope to keep up with you guys on the forum.

    Sandy Ray

    Hi again,

     So happy to hear the good news and a relief for all of us. Sounds like a good day you have planned today, enjoy the kiddies. We come back in 2 monthe but we don't have the appt.yet. Thank you for understanding.

    Becky

  • skaterdad
    skaterdad Member Posts: 16
    The road to recovery

    Hello everyone.

    It has been a while since I have checked in, so here is an update on where things are. My liver numbers are back in the normal range (after being close to 10x normal!). My liver biopsy confirmed that the drug I was taking for my UC (Lialda) seems to have caused drug-induced hepatitis. Now that I have stopped it my symptoms have returned somewhat, but they seem to be tempered by the chemo drugs (especially the Prednisone). It makes me wonder, if I never was diagnosed with cancer, I wonder how far my liver numbers could have gotten out of whack before someone noticed.

    Now that I am at somewhat of a baseline, my onc cleared me for my first infusion of R-CHOP, which was administered two days ago. Aside from the 'red devil' being a bit intimidating, and some short allergic reactions to the Rituxan, it was not too bad at all. I am happy to report that so far I only feel a bit tired, semi-sick, and occasionally nauseas. I expect the nadir and hairloss won't be a walk in the park, but for now I am just elated to be cruising down the treatment side of the hill after spending the last 6 months climbing the diagnosis side. One cool thing I noticed is that one of the nodes I used to be able to feel quite easily is now much more difficult to find. Magic.

    One of the surprisingly tough things has been sharing the experience with my 3-yr old. Occasionally she says things that make me realize that she has a much deeper understanding of what is going on than I expected. I am doing my best to try and make cancer fun, but it can be difficult to hear her say things like "Daddy when I grow up I am going to go to your doctors!" :(

    Thank you all for your support. For posterity sake I will keep posting my progress here just in case someone else who has NLPHL wants to read about what the road to recovery looks like. For now, I am planning on doing morning skateboarding sessions by the beach to keep my mental and physical state up.

  • lindary
    lindary Member Posts: 711 Member
    R-Chop

    When I started my first chemo I epxected all sorts of horrible. That day when I got home all I felt was tired. The 5 days of Prednisone weren't bad either. Then the second day after I stopped the prednisone all I could do was sleep. After that it was just a routine. Since my treatments were on a Tues I arranged with my family that we would get together the Sat or Sun before the next treatement. I was in the office 9 days of the cycle and worked from home the other days, when I could. That kept me active physically & mentally.

    My grandkids were great but none of them said anything like you duaghter did. That was sweet.

  • skaterdad
    skaterdad Member Posts: 16
    Complete Metabolic Response

    Just to update everyone I got some good news from my mid-chemo PET scan. All of the previously active lymph nodes are now *significantly* smaller and do not have any uptake on the PET scan. Also, my mild splenomegaly has significinatly reduced. According to my onc. this is considered a complete metabolic response to the chemo. Yay!

    It's nice to have some good news after almost a year of what seemed like a neverending sequence of bad.