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Thread: My dad is struggling with his diagnosis

  1. #11
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    Hi, that sounds more positive and good to see signs of improvement, once treatment starts then he should get some more relief as we explained earlier, don't worry to much about staging and 6 rounds of rchop would be the norm and they may consider 8 rounds once they have seen the scan results. As for radiotherapy a lot will depend on where the dlvc presents and how safe it is to treat those areas, a discussion to have further down the road.

    He may find her gets a metallic taste during part of each cycle that gets progressively worse as treatment progresses, spicy or season food helps as does home made soup, also if food becomes a struggle, little and often - grading can work and he may find he goes off some foods. I could not drink coffee during treatment, plus he should get a list of foods to steer clear of as some can counter the chemo and others increase the risk of picking up infections. Pineapple helps if he gets a dry mouth and it can counter the metallic taste too.

    Lots to share as treatment progresses and you see how it effects him as we all react differently.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  2. #12
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    I can drink a lot of chicken broth , it's my savior during chemo. I drink also a lot of water with berries, candies or cheese. I start miralax a day or two before chemo with Zofran. Works fine.

  3. #13
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    Hi everyone!

    Sorry I havenít been updating as we go, but life, right?

    We finally received the results of the PET SCAN this Friday (although the oncologist made it seem that for his type of lymphoma it didnít matter as much, itíd only affect the number of chemo sessions and not the type), and, as expected, IT IS LOCALIZED. We are very happy with the relieving news. His catheter was implanted already as well and first round of chemo is this Tuesday.

    He seems to be in good spirits now that all of his medical team passes on the message that it isnít a matter of if he beats this, but of when. Itís a matter of patience. Heís also no longer in so much pain after steroids and has been able to eat small portions of food, even some solids (the other day, he ate an egg and toast sandwich and I was so happy for him because he didnít look or feel sick. Heís also been drinking a lot of gatorade since he was unable to eat, and upon explaining to be the rigorous no sugar post chemo diet for a few days, I asked him ďIs there sugar in this? Should you be drinking this?Ē And he replied with ďLet the cancer cells feed a little. They have no idea whatís coming for them!Ē Sense of humor: check. Will to fight: check. Will to comply with doctorís orders: check.

    I feel a lot more positive about the whole thing, I even stopped hovering all the time (calling and texting him every day like a maniac). But I think anxiety is catching up to me because Iím finally start to break down bit by bit. Iím not his primary caregiver (although Iíll argue heís in good shape to take care of himself as well as possible), it is my stepmother ó and sheís the one Iím worried about. Sheís been under so much stress I canít even fathom.

    Thank you everyone so much for the support. Any advice/suggestion on what to expect after chemo (one round every three weeks) and what helps would be great. Iíve been showing all messages to him! I hope everyone is well.

  4. #14
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    I think his doctors have him on Miralax already, as well as a few other digestive meds because of the location of the tumors. Do you take them throughout the whole cycle? What kind of cheese do you eat? Can you eat it right after chemo or just after the following regimen days?

  5. #15
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    Quote Originally Posted by johnr View Post
    Hi, that sounds more positive and good to see signs of improvement, once treatment starts then he should get some more relief as we explained earlier, don't worry to much about staging and 6 rounds of rchop would be the norm and they may consider 8 rounds once they have seen the scan results. As for radiotherapy a lot will depend on where the dlvc presents and how safe it is to treat those areas, a discussion to have further down the road.

    He may find her gets a metallic taste during part of each cycle that gets progressively worse as treatment progresses, spicy or season food helps as does home made soup, also if food becomes a struggle, little and often - grading can work and he may find he goes off some foods. I could not drink coffee during treatment, plus he should get a list of foods to steer clear of as some can counter the chemo and others increase the risk of picking up infections. Pineapple helps if he gets a dry mouth and it can counter the metallic taste too.

    Lots to share as treatment progresses and you see how it effects him as we all react differently.

    John
    Thanks for all the tips, John! May I ask where your tumors were? Iím wondering because since his are GI tumors and he gets a lot of acidity, maybe pineapple and spicy foods wouldnít be very helpful.

  6. #16
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    Quote Originally Posted by fighterm View Post
    I can drink a lot of chicken broth , it's my savior during chemo. I drink also a lot of water with berries, candies or cheese. I start miralax a day or two before chemo with Zofran. Works fine.
    I think his doctor has him on miralax and other meds already since his tumor is a GI tumor. I was wondering, what kind of cheese do you eat and can you eat it right after chemo? Because he loves cheese and that seems like something heíd enjoy!!

  7. #17
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    Hi, mine were multiple in the small intestine and a large mass in the abdomen, so perhaps before his treatment or when it starts discuss food options with his doctor as I may have already mentioned certain foods are a no no. I assume he is to receive rchop so he should start to get some relief quickly and as he is on steroids he should also be on omeprazole or similar so that will counter the stomach acid issues.

    Now for your stress try to slow down and do things that keep you happy and make you smile as this will be for the next 4 to 6 months and you need a strategy to help you support your dad.

    as we often say, let battle commence and don't worry about sugary drinks, sugar feeding cancer cells is much more complex than people understand so cutting out sugar is impossible, just make sure he does not lose to much weight and his body has the energy it needs to fight the disease, in simple terms.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  8. #18
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    Hi
    I hope that your dad is doing ok with his chemo. One more thing to think about: If he does end up taking omeprazole or another stomach acid blocker, and heíll be doing so for an extended period, he should consider asking about B 12 supplements or injections. Hopefully he has gotten a B 12 level. As we age, we donít absorb it as well and B 12 deficiency is common even in a healthy older population. But lack of stomach acid can further impair B 12 absorption, and low B12 levels can lead to both cognitive and hematologic problems

    Cheers,

    Jim

  9. #19
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    Hey guys! Sorry for the lack of update. Iíve finally been able to relax a little and take care of my own life again. Also, there hasnít been much to update on now that heís started treatment.

    John, my dad is definitely getting a lot of relief already, even after just steroids and the first round of chemo. Heís had a larga mass in his abdomen like you, so, Iím sure you know what it feels like. However, heís eating better and more and heís back to work and a lot more perked up (I talked to him on the phone today and he sounded really well). The only side effects heís had so far was lack of appetite for a couple of days and some diarrhea. And heís been getting tired really easily ó like daily naps after work. Otherwise, I feel heís been doing very well, thankfully. He has lost over 30lbs already, though ó he was overweight so I feel that when this is over heíll be in a healthy weight ó although weight was lost for the worst reason!

    Jim, Iíll ask him about B12, even though Iím 99% sure I saw it on his list of medications. Iíll make sure of it, though. Thank you for caring and for the advice!

  10. #20
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    Thats a great update and good to read you are more relaxed, re lack of appetite many of us have experienced that and whilst not feeling like eating I did as I knew I had to, it was something I could do that made a difference, all part of being positive and doing what I could do to get the outcome I wanted. Some people who still struggle with food find grazing can help and I know from others who I met during treatment they just struggle and lost lots of weight and for them it was forcing protein drinks down that kept them going. The fatigue may progressively get worse but the naps do help, all bodes well. Is he having a mid point scan?

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

 

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