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  • Husband was just diagnosed with DLBCL

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    Old 03-15-2020, 08:49 AM   #1
    anniam
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    Husband was just diagnosed with DLBCL

    Recently, he had a blood clot in his leg, which they thought might be due to a recent surgery he had. Through bloodwork, they saw liver enzymes were high. Both AST and ALT levels were elevated. Upon treating him for the blood clot, they put him on Eliquis. The Eliquis caused internal bleeding and he ended up in the hospital for 6 days to receive 5 units of blood and to recover. During that time, they put a filter in the Vena Cava and they said he couldn't take blood thinner anymore. Then both legs swelled up, and they worried the filter might be plugged. They did a CT scan and discovered the enlarged lymph nodes along his spine. They also said they could see spots on the liver and on the spleen. They determined the enlarged lymph nodes were pressing on the renal artery, which caused the kidneys not to function to full capacity, which caused the blood clot in the leg. Now, it was time for a bone marrow biopsy which was clear, and a liver biopsy, and the diagnosis was given to us just this past Friday. Now the fear sets in. Not so much for him as much as for me. He has come to peace with the idea of having to beat lymphoma, and it just scares me to death right now. The doctor has also put him back on Eliquis, albeit a lower dose of it, but after he just went through major internal bleeding with it, we looked at the doctor like he must be crazy. His bleeding was in the upper GI, but they couldn't even determine where, because they were unable to get past the duodenum with the scope because even the slightest touch with the scope caused him to bleed. The oncologist thinks he's probably all healed up by now, but he feels a bit like a guinea pig in all of this.

    We will be getting bloodwork done each week for the next 4 or 5 weeks at this time, he will have a port inserted, a PET/CT scan next week as well as an Upper GI and a colonoscopy. And then treatment begins. We were told RCHOP. We are new to this and really have no idea what to expect. He was told 6 months of treatment. But told 60 percent chance of beating this? Or did I misunderstand the doctor on that?? During treatment, we do have a second house he can stay at, away from germs, and away from our kids and me. Mainly it will be his base, and hopefully a base that will be healthier for him. What I am hoping for is that this thing can be beat rather easily. When the doctor said Chemo is only once every couple of weeks so that it gives his body time to recover, I wonder if it's enough to kill this cancer!! The doctor said he can go back to work during treatment, too. But now we have the added stress of the Corona Virus during all of this as well. It's next to impossible to find any cleaning supplies, much less toilet paper, and we want to keep him as healthy as we possibly can. Any advice, tips or just plain hope you can give me is so greatly appreciated!!!

     
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    Old 03-15-2020, 11:19 AM   #2
    Sparkle Lolie
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    Re: Husband was just diagnosed with DLBCL

    I'm currently receiving R-CHOP for DLBCL. I was diagnosed with a blood clot following cycle 3. I started on 14 day cycles which have now switched to 21 day cycles. The longer cycle has no adverse effect on outcomes.

    If you have any specific questions I may be able to help, but the important thing for you to know is that lymphoma isn't like the solid cancers. It's very treatable.

    Your husband and I picked a bad year to be immunocompromised, but my team is watching me like a hawk and taking additional measures to limit my exposure to other people. I expect your husband's team will do the same.

    I also strongly encourage your husband to join an online forum. The support and knowledge of others who have gone through what he's going through is invaluable.

    This forum isn't very busy but I already knew a couple of the posters from another forum which closed down. The MacMillan forums are very busy if he would prefer something with a faster pace.

     
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    Old 03-15-2020, 03:37 PM   #3
    PBLz
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    Re: Husband was just diagnosed with DLBCL

    Hello Anniam,

    I am sorry to read your husband's news - obviously it takes some adjusting to. R-CHOP is a well-known chemotherapy regimen that yields excellent results, and DLBCL is a form of lymphoma which can be completely cured.

    I could not help but notice that although his diagnosis only dates from a couple of days ago, you have been on these forums since 2013, and had a look at your earlier posts, to find that your husband seems to have had lymphoma for at least seven years. It also seems that this has never been clear in your minds.

    I do not know where you are, but if you have returned to the same oncologist you saw previously, you may want to consider seeking a second opinion from a hematologist at a university hospital or designated cancer care center. If you have turned to a different doctor and/or hospital, it is important that you tell them of that 2013-2014 episode, as your husband may then have had an indolent form of lymphoma (possibly follicular lymphoma) which can naturally wax and wane for a long time and is known to transform into DLBCL.

    If such is the case, and with his best interests in mind, your husband's medical team need to be aware of the fact that they are dealing with transformation, as this could impact treatment decisions.

    I hope this helps.

    Good luck to you and your husband.

    PBLz
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 03-15-2020, 05:10 PM   #4
    Sparkle Lolie
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    Re: Husband was just diagnosed with DLBCL

    I have to agree with PBLz. The previous suspicion of lymphoma is extremely relevant here and it's important that the current team be aware of it.
    __________________
    DLBCL diagnosed December 2019
    R-CHOP 14 started 16 January 2020
    R-CHOP completed 24 April 2020
    HD-MTX completed 29 June 2020
    PET 5 August 2020 shows no remaining signs of DLBCL
    Adenocarcinoma of lung confirmed 8 September 2020

     
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    Old 03-16-2020, 12:13 PM   #5
    anniam
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    Re: Husband was just diagnosed with DLBCL

    Quote:
    Originally Posted by PBLz View Post
    Hello Anniam,

    I am sorry to read your husband's news - obviously it takes some adjusting to. R-CHOP is a well-known chemotherapy regimen that yields excellent results, and DLBCL is a form of lymphoma which can be completely cured.

    I could not help but notice that although his diagnosis only dates from a couple of days ago, you have been on these forums since 2013, and had a look at your earlier posts, to find that your husband seems to have had lymphoma for at least seven years. It also seems that this has never been clear in your minds.

    I do not know where you are, but if you have returned to the same oncologist you saw previously, you may want to consider seeking a second opinion from a hematologist at a university hospital or designated cancer care center. If you have turned to a different doctor and/or hospital, it is important that you tell them of that 2013-2014 episode, as your husband may then have had an indolent form of lymphoma (possibly follicular lymphoma) which can naturally wax and wane for a long time and is known to transform into DLBCL.

    If such is the case, and with his best interests in mind, your husband's medical team need to be aware of the fact that they are dealing with transformation, as this could impact treatment decisions.

    I hope this helps.

    Good luck to you and your husband.

    PBLz
    6 years ago, he was never officially diagnosed. Although the doctors kept on labeling him as a lymphoma patient. At that time, he had pain in his abdomen and through scans then, they saw enlarged lymph nodes. They did a colonoscopy looking for colon cancer. The didn't find any cancer, but they did find that he had "very bad diverticulosis". They finally did a PET scan and the oncologist we saw then told us that there was NO cancer in that scan. We are with a completely different oncologist this time and my husband definitely likes him a lot better!! I like him a lot better, too! I asked that oncologist back then, could that have been an infection, perhaps from diverticulitis that had enlarged the lymph nodes then?? He said yes. It was possible. He asked my husband to come back in a few months for bloodwork. My husband did and things looked good. Then the doctor said he wanted to do another CT scan because "lymphoma can come back!" We felt like How can they say he had lymphoma when nothing was ever found back then?

    Now this time, we know for sure through that biopsy, so the news is real and it needs to be fixed. But I feel like the doctor didn't do a real good job of being optimistic about it. I can only believe we found this very early, as he has no other symptoms at all. I thank you for telling me something very positive on this in that this is something that can be cured!! Not just put into remission, but CURED! That is huge and I pray that they have correctly diagnosed this!! We have told this doctor and ALL doctors that he has seen all about 2014 and what we went through, what tests were done, the results that we got... Everything. They also wanted to say it must have been lymphoma back then that went into remission before the PET scan without any treatment whatsoever(?). None of that makes sense to me or to my husband. Again, labeling him with lymphoma that we never had proof of.

    I thank you for your reply and if I can take anything positive out of it, it's definitely helpful right now! Things are so upside down!!

     
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    Old 03-16-2020, 01:36 PM   #6
    johnr11
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    Re: Husband was just diagnosed with DLBCL

    Hi and sorry to see your husband has had issues for a while, all the advice above is excellent so rather than repeat I would suggest you ask did the biopsy only show DLBC or was the any evidence of follicular NHL, as its possible both may show up when they do the pathology.

    If it is only dlbc then take heart from my experience I was diagnosed stage 4 in April 2009 and after 8 cycles of rchop I made remission and am now classed as cured.

    any questions just ask

     
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    Old 03-16-2020, 01:50 PM   #7
    PBLz
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    Re: Husband was just diagnosed with DLBCL

    Quote:
    Originally Posted by anniam View Post
    We have told this doctor and ALL doctors that he has seen all about 2014 and what we went through, what tests were done, the results that we got... Everything.
    You did well in making sure they were aware of that previous episode. Now, in the case of transformation, both types of lymphoma can coexist in the same patient. If they have done a biopsy and found only DLBCL, it doesn't mean there is no follicular lymphoma in another tumor. The same treatment works for both, so no worries there - only, it may get rid of the DLBCL without completely eradicating the indolent strain, so that may change the surveillance post-treatment.


    Quote:
    Originally Posted by anniam View Post
    They finally did a PET scan and the oncologist we saw then told us that there was NO cancer in that scan. [...] He asked my husband to come back in a few months for bloodwork. My husband did and things looked good. Then the doctor said he wanted to do another CT scan because "lymphoma can come back!" We felt like How can they say he had lymphoma when nothing was ever found back then? [...]
    They also wanted to say it must have been lymphoma back then that went into remission before the PET scan without any treatment whatsoever(?). None of that makes sense to me or to my husband.
    That is the whole point with indolent lymphomas such as follicular: it can wax and wane, i.e. flare up and go into spontaneous remission repeatedly over the course of many years. Also, in the case of an indolent lymphoma, the FDG uptake may be very low.

    Quote:
    Originally Posted by anniam View Post
    Again, labeling him with lymphoma that we never had proof of.
    Yes, a biopsy is primordial in definitely identifying the strain of lymphoma you're dealing with. However, imaging enables the medical professionals to see some tell-tale signs of cancer, especially with respect to the structure of the affected lymph nodes.

    It is excellent news if you are both comfortable with your husband's new oncologist. Trust is essential in such circumstances.

    I am glad if I was able to be of assistance to you and your husband.

    I wish you the best possible outcome. Do make sure your husband is safe and out of COVID-19's way as chemotherapy will lower his immune system.

    PBLz
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 03-16-2020, 02:01 PM   #8
    Sparkle Lolie
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    Re: Husband was just diagnosed with DLBCL

    One thing I haven't seen mentioned is the intensity of the pre-chemo workup. I found it almost overwhelming.

    Each test brings with it a new round of anxiety and they're happening one after the other. Finally being cleared to start treatment and getting that first cycle out of the way brings with it a certain measure of relief, despite the remaining uncertainties.

     
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    Old 03-25-2020, 05:30 PM   #9
    anniam
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    Re: Husband was just diagnosed with DLBCL

    My husband's port was put in on Monday. And yesterday was his PET scan.

    Of course reading the results scares the hell out of me, but we don't truly know the extent until we speak with the doctor. I am trying to stay positive, but when you read everything and try and decipher the news, it brings horrible thoughts. Summed up, it says: Severe extensive abnormal confluent masslike pathologic adenopathy throughout abdomen and pelvis as described above with additional abnormally prominent lymph nodes in the axillary regions and cervical lymphatic chains bilaterally. These areas demonstrate pathologic hypermetabolism as detailed above. The appearances are consistent with lymphoma. Based upon degree of activity this would be compatible with Deauville 5 disease. Please correlate clinically.

    This is where I wish the doctor would call us and tell us what we're dealing with in plain English because for something we feel just got going in the last few months, this is startling to me. I have kept this to myself as I don't want to show my husband at this time. He would rather not read his chart at all, he'd rather speak with the doctor on this. He was supposed to have a colonoscopy and scope tomorrow, but it was cancelled due to our daughter having had a fever of about 100.2 the last few days. I made sure she was in her room and she had very little distant contact with my husband, meaning she was in the same room, but not near him for a very short period of time.

    Today, he's got very little energy and his legs are still swollen. I am wishing we could get treatment going right now!! As of now, chemo is set to begin April 6th. Of course he has prescriptions that will begin this coming week in preparation.

     
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    Old 03-25-2020, 09:47 PM   #10
    Sparkle Lolie
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    Re: Husband was just diagnosed with DLBCL

    None of that is especially troubling. Remember that you're dealing with a blood cancer and not a solid tumour here.

    I had a dramatic response to the pre-phase Prednisone. Don't be surprised if your husband has a rapid improvement before chemo even starts.

     
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    Old 03-26-2020, 01:09 AM   #11
    johnr11
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    Re: Husband was just diagnosed with DLBCL

    Hi, as has been mention blood cancers are not like solid tumour cancers so whilst we can say don't worry, that will be hard as it all sinks in. Treatment is normally very effective and because its given to the blood the treatment goes everywhere the disease is and stops it and kills it at the same time. Thats why people often report feeling a benefit early on in treatment. Have they said if steroids are to be given before treatment starts? if not ask today and see what they advise.

     
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    Old 03-26-2020, 09:00 AM   #12
    anniam
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    Re: Husband was just diagnosed with DLBCL

    He has been on Prednisone before. Just after the biopsies had been done. He actually loved the energy he got off of it. LOL He will begin Prednisone again this coming week before he begins chemotherapy. I am so anxious to get this ball rolling. I just want my husband back!! This is a living hell, as you know. Thank you for your messages. It definitely makes me feel better. I pray we can beat this sooner rather than later. There's just so much going on with the Coronavirus and all. It's all so overwhelming.

     
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    Old 03-26-2020, 12:35 PM   #13
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    Re: Husband was just diagnosed with DLBCL

    Once he starts treatment then here are some tips, keep a daily diary of how he is and any issues, also use it to note any questions to ask his team. Next make sure he stays hydrated and drinks lots, exercise daily and eat plenty of fresh food if possible, after that see how he goes and what effects he experiences as its a very individual experience where some sail through treatment and others suffer various side effects.

    Any questions once treatment starts ask as we have all been through it and learnt some tricks to help.

    John

     
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    Old 03-28-2020, 09:52 AM   #14
    anniam
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    Re: Husband was just diagnosed with DLBCL

    I am wishing we were starting chemo this Monday instead of Next Monday. He's got very little energy now, food does not taste good so he's not eating a lot, and he's lost so much weight and muscle now. I feel like they should have already started to treat him with chemo before now when he was still somewhat strong! I will definitely keep taking daily notes on how he's feeling, if there are any issues and so on. This is all so hard on him, and on the rest of us as we have just watched his body beign a downhill spiral in the last 2 months. I worry he won't be strong enough to even begin chemo soon!!

     
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    Old 03-28-2020, 10:12 AM   #15
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    Re: Husband was just diagnosed with DLBCL

    You have the hardest role as the carer, all you can do is support encourage and listen and try gentle persuasion when needed. I know it seems a long wait and I am surprised they have not started treatment at the earliest opportunity, but as we have said once they do he should quickly get some relief.
    sending some positive vibes your way.

     
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