Very weak after 2nd chemo treatment-need some support

pepperflynn
pepperflynn Member Posts: 8
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I have been diagnosed with large b cell lymphoma and just finished my second round of  5 day chemo treatment 2 days ago. I have been prescribed the R-EPOCH treatment. This 2nd time I am so much weaker and my stomach is quite sick in spite of taking the meds. I am also having to fight the insurance company to cover the Zofran which adds to the stress.  I would appreciated any encouragement about getting thru this. I can hardly eat and am feeling pretty scared. Anyone whose gone thru this and is getting better, any words of encouragement would be appreciated.  

Comments

  • PBL
    PBL Member Posts: 366 Member
    #2
    Support

    Pepperflynn,

    Chemotherapy is no picnic, and understandably, administrative and financial worries can increase the distress that goes with it. I do hope you are not facing this alone. In the event that you are, it is high time you open up to family members or trusted friends - or even neighbors who may be willing to step in and assist you. If this is not possible for you, perhaps you could turn to your medical team and ask if they have a social worker or patient advocate who could help you navigate through those insurance issues.

    As regards treatment and its side effects, you should also let your medical team know when they are overwhelming as they seem to be for you now. There probably are simple solutions they can offer to help you feel better.

    Do keep in mind that however harsh treatment is, we have gone through all of this, and have come out the other side - so you can do it too.

    Hang in there!

    PBL

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    #3

    Ask the insurance if they cover emergency room visits. If they do, then tell them you either take Zofran of make an ER trip each time you are nauseated. You might be surprised how quickly they respond.

  • dana-mihaela
    dana-mihaela Member Posts: 39
    #4
    Hi Pepperflynn

    I got through 5 rounds of R-CHOP treatments a year ago. I understood from this forum that R-EPOCH is quite similar and you did not have the Prednisone that I had. I did not do well with the withdrawal from Prednisone which you stop after 5 days of taking 100mg. To be honest with you my second chemo was a little better than the first one since I knew what to expect from it. After day 7 after infusion I would feel very tired and without energy but after day 11 I would start getting better. Once you get to # 4-5 there is a cumulative effect of side effects and you feel more tired your body gets full of the poison. 

    You are going to be fine I am sure. All the people here got through 6 to 8 rounds of chemo.  Good luck.

    Dana

  • Evarista
    Evarista Member Posts: 336 Member
    #5
    Chemo struggles

    Dear Pepper, so, so sorry to hear that you are having such a difficult time.  I, too, had an incredibly tough time following the first couple of rounds of my R-EPOCH.  Hopefully you will have enough strength to read through some of the suggestions on this site.  This thread is particularly helpful, I think. Some of these issues will resolve as you move into week 2 & 3 post-chemo and hopefully you can figure out tricks for yourself to face the next rounds.

    For your immediate concerns:  remember that many things are related.  You feel weak and have no appetite. Very common. But if you do not consume something, you will continue to get weaker. So you have to try.  Likewise, I'm sure you don't want or can't get out of bed.  But you have to try, as long as you can do so safely.  The more you can fight these things, the better it be down the road.

    Food:  if you can do nothing else, try to get in at least one but preferably two cans of a nutritional supplement every day.  "Ensure Enlive" and "Boost Optimum" have the highest amount of protein that I could find.  Delivery from Walmart or Amazon is the easiest way to get these.  If you have issues with blood glucose, check with your doc about whether these are OK for you. Next, ask your palate what sounds good (if anything) and eat that.  I only wanted pasta for months;  Lean Cuisines are generally bland but high in protein. Bland fiber cereal will help with constipation (Fiber One) or Nutri-grain Eggo waffles.  Other things that went down easy for me:  Haagen-Daz vanilla ice cream, plain cream cheese on the toast, fresh avocado (good for low potassium), peaches, etc. in light syrup. You have to work out what you can tolerate and don't be surprised if your preferences change. I ate things that I never ate before or since and just decided that nothing was too weird.

    Nausea:  if you cannot get the Zofran, ginger chews actually do help, as does Ginger Ale.  You can get the chews at Whole Foods or from Walmart/Amazon.

    Other things are going to come up as you move through this, but you just have to cross each bridge as you get to it.  Please don't hesitate to come back and ask..Everybody will help.  And as PBL says, this is too hard to try to do alone.  Get help if you need it.

    Lastly, you are getting Prednisone with your treatment (that's the "P" in EPOCH) and prednisone withdrawal is difficult.  The good news is that you are almost past withdrawal for this round and should be sleeping better and hopefully feeling better in the next few days.  Hang in there.

  • pepperflynn
    pepperflynn Member Posts: 8
    #6
    Evarista said:

    Chemo struggles

    Dear Pepper, so, so sorry to hear that you are having such a difficult time.  I, too, had an incredibly tough time following the first couple of rounds of my R-EPOCH.  Hopefully you will have enough strength to read through some of the suggestions on this site.  This thread is particularly helpful, I think. Some of these issues will resolve as you move into week 2 & 3 post-chemo and hopefully you can figure out tricks for yourself to face the next rounds.

    For your immediate concerns:  remember that many things are related.  You feel weak and have no appetite. Very common. But if you do not consume something, you will continue to get weaker. So you have to try.  Likewise, I'm sure you don't want or can't get out of bed.  But you have to try, as long as you can do so safely.  The more you can fight these things, the better it be down the road.

    Food:  if you can do nothing else, try to get in at least one but preferably two cans of a nutritional supplement every day.  "Ensure Enlive" and "Boost Optimum" have the highest amount of protein that I could find.  Delivery from Walmart or Amazon is the easiest way to get these.  If you have issues with blood glucose, check with your doc about whether these are OK for you. Next, ask your palate what sounds good (if anything) and eat that.  I only wanted pasta for months;  Lean Cuisines are generally bland but high in protein. Bland fiber cereal will help with constipation (Fiber One) or Nutri-grain Eggo waffles.  Other things that went down easy for me:  Haagen-Daz vanilla ice cream, plain cream cheese on the toast, fresh avocado (good for low potassium), peaches, etc. in light syrup. You have to work out what you can tolerate and don't be surprised if your preferences change. I ate things that I never ate before or since and just decided that nothing was too weird.

    Nausea:  if you cannot get the Zofran, ginger chews actually do help, as does Ginger Ale.  You can get the chews at Whole Foods or from Walmart/Amazon.

    Other things are going to come up as you move through this, but you just have to cross each bridge as you get to it.  Please don't hesitate to come back and ask..Everybody will help.  And as PBL says, this is too hard to try to do alone.  Get help if you need it.

    Lastly, you are getting Prednisone with your treatment (that's the "P" in EPOCH) and prednisone withdrawal is difficult.  The good news is that you are almost past withdrawal for this round and should be sleeping better and hopefully feeling better in the next few days.  Hang in there.

    Thanks so much for all your

    Thanks so much for all your ideas. I have been drinking flat ginger ale and that helps a lot. I do feel alone, but I have sons who help and a few other people who are driving me to chemo and bringing me food. I hope to get the doc to fill out the paperwork and get the Zofran approved in the next few days. In the meanwhile, I have 4 more 8 mg. tablets to get me thru.

     

  • pepperflynn
    pepperflynn Member Posts: 8
    edited September 2017 #7
    Has anybody heard of "the chemo cocktail"?

    It's supposed to help with the nausea. Is it prescription?

  • pepperflynn
    pepperflynn Member Posts: 8
    #8
    PBL said:

    Support

    Pepperflynn,

    Chemotherapy is no picnic, and understandably, administrative and financial worries can increase the distress that goes with it. I do hope you are not facing this alone. In the event that you are, it is high time you open up to family members or trusted friends - or even neighbors who may be willing to step in and assist you. If this is not possible for you, perhaps you could turn to your medical team and ask if they have a social worker or patient advocate who could help you navigate through those insurance issues.

    As regards treatment and its side effects, you should also let your medical team know when they are overwhelming as they seem to be for you now. There probably are simple solutions they can offer to help you feel better.

    Do keep in mind that however harsh treatment is, we have gone through all of this, and have come out the other side - so you can do it too.

    Hang in there!

    PBL

     

    PBL, thanks for all your

    PBL, thanks for all your support. I am just afraid I won't have enough strength to get thru this by chemo treatment 6. 

     

  • pepperflynn
    pepperflynn Member Posts: 8
    #9
    po18guy said:

    Ask the insurance if they cover emergency room visits. If they do, then tell them you either take Zofran of make an ER trip each time you are nauseated. You might be surprised how quickly they respond.

    Thanks Po18guy, If desperate

    Thanks Po18guy, If desperate I will have to go to the ER. Problem is they leave you out there in the room with all the germy people to wait.

  • pepperflynn
    pepperflynn Member Posts: 8
    #10
    dana-mihaela said:

    Hi Pepperflynn

    I got through 5 rounds of R-CHOP treatments a year ago. I understood from this forum that R-EPOCH is quite similar and you did not have the Prednisone that I had. I did not do well with the withdrawal from Prednisone which you stop after 5 days of taking 100mg. To be honest with you my second chemo was a little better than the first one since I knew what to expect from it. After day 7 after infusion I would feel very tired and without energy but after day 11 I would start getting better. Once you get to # 4-5 there is a cumulative effect of side effects and you feel more tired your body gets full of the poison. 

    You are going to be fine I am sure. All the people here got through 6 to 8 rounds of chemo.  Good luck.

    Dana

    Dana, was the R-CHOP

    Dana, was the R-CHOP successful for you? Did they give you a PET scan after your 3rd treatment?

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #11
    pepperflynn said:

    Thanks Po18guy, If desperate

    Thanks Po18guy, If desperate I will have to go to the ER. Problem is they leave you out there in the room with all the germy people to wait.

    Emergency room

    i will say I had to make 1 visit to ER when I ran a fever after the first treatment. They got me back within 10 minutes when I told them I was on Chemo. They did not want me sitting out there with a chance of infection. Turns out I had the flu that I caught from my nurse who gave me the Chemo treatment. I was fortunate I had  nausea medicine but never needed it.

    Wishing you the best.

    Sandy Ray

  • dana-mihaela
    dana-mihaela Member Posts: 39
    #12
    pepperflynn said:

    Dana, was the R-CHOP

    Dana, was the R-CHOP successful for you? Did they give you a PET scan after your 3rd treatment?

    Hi Pepperflynn

    I had marginal zone lymphoma (malt) this is a slow growing lymphoma ,indolent. My doctor wanted to treat it with a strong chemo hoping that it will not come back. Usually my type of lymphoma is treated with less invasive chemo sometime only with Rituxan or only radiation if it is bulk. And yes you are right after 3rd treatment I had a PET scan that showed no cancer left. I had 2 more treatments afterwards just to make sure all was gone. 

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited September 2017 #13
    pepperflynn said:

    Thanks Po18guy, If desperate

    Thanks Po18guy, If desperate I will have to go to the ER. Problem is they leave you out there in the room with all the germy people to wait.

    Not exactly...

    I meant it as leverage to get insurance to pay for even generic Zofran - must less costly. With a suppressed immune system, I would not go to an ER without mask and gloves - but I've been doing that in public for two years now.

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited September 2017 #14
    R-CHOP

    Is the gold standard for almost all B-Cell Lymphomas. Yet, there is no regimen that produces 100% response, so ask your hematologist what plan B, C and D are. Seriously. If I did not have a hematologist who likes to stay 'three steps ahead of the cancer', I would not be here. Just that simple.

  • Justiny35
    Justiny35 Member Posts: 22
    #15
    CBD oil

    CBD oil helps with nausea. I don't know if you live in a medical state or what not but I've heard that is helping alot of people.

  • Evarista
    Evarista Member Posts: 336 Member
    #16
    CBD etc

    There is also a prescription THC derivative called "Marinol" that I was offered at one point.  I didn't use it so cannot comment on it's efficacy or effects.  Also, don't know if insurance would have paid.  Some people try "edibles".  My doctor's office was not willing to say "OK" to this, just emphasized that under no circumstances should anything be taken by an oral inhalation route. (i.e., no smoking).

  • pepperflynn
    pepperflynn Member Posts: 8
    #17
    dana-mihaela said:

    Hi Pepperflynn

    I had marginal zone lymphoma (malt) this is a slow growing lymphoma ,indolent. My doctor wanted to treat it with a strong chemo hoping that it will not come back. Usually my type of lymphoma is treated with less invasive chemo sometime only with Rituxan or only radiation if it is bulk. And yes you are right after 3rd treatment I had a PET scan that showed no cancer left. I had 2 more treatments afterwards just to make sure all was gone. 

    Dana, I am happy for you and

    Dana, I am happy for you and hoping my treatment results will be like yours. It would be so nice to live a normal life again. And thankyou for sharing your experience. It would be easy to turn your back and go on living your life and removing your name from here.

  • pepperflynn
    pepperflynn Member Posts: 8
    #18
    Justiny35 said:

    CBD oil

    CBD oil helps with nausea. I don't know if you live in a medical state or what not but I've heard that is helping alot of people.

    Thanks. I am in Calif. CBD

    Thanks. I am in Calif. CBD oil has helped my son's friend. I will ask my doc what she thinks. 

  • Nicholas25
    Nicholas25 Member Posts: 7
    #19
    Finished R-EPOCH

    Just finished all 6  rounds 3 days ago. It was  a haul and cannot believe I am finished and  am in remission. I expect I will have a blood transfusion in a few days as that has become my pattern after the 3 round. Expect to feel rough for a while until we get our health back...that is the plan.  By the way I had Diffuse Large B Cell Lymphona of multiple regions.  Fatigue is tough and I am literally laying around reading books, etc.  Whatever problems I had in hospital I would ask the nurses and they would figure it out for me. Having a tough time eating but trying to eat anything. I have found a protein drink at Whole Foods called Orgain that is pretty tasty. Allowing myself anything I want in order to get food. You will make It!

  • Ralphie62
    Ralphie62 Member Posts: 61 Member
    edited November 2017 #20
    Zofran

    so with a good rx card, you can get generic very reasonably priced at Kroger ... Costco would probably be even cheaper... that's what my daughter dud

  • Ralphie62
    Ralphie62 Member Posts: 61 Member
    edited November 2017 #21
    pepperflynn said:

    Thanks so much for all your

    Thanks so much for all your ideas. I have been drinking flat ginger ale and that helps a lot. I do feel alone, but I have sons who help and a few other people who are driving me to chemo and bringing me food. I hope to get the doc to fill out the paperwork and get the Zofran approved in the next few days. In the meanwhile, I have 4 more 8 mg. tablets to get me thru.

     

    Nausea

    ginger extract is over the counter, and sooo much better than ginger ale. Also, with a good rx card, which is free, you can get generic zofran at Kroger very affordaably priced... Costco is maybe even cheaper... when in doubt , do it without insurance if you have to... that is what my daughter did... much cheaper

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