Questions about what to expect?

Glennda
Glennda Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello all-

My husband has just been diagnosed with Follicular NHL, Grade II, we are going to get the stage on Monday (he just finished the PET scan, the MRI, bloodwork, and bone marrow biopsy). He has swelling in the lymph glands in his groin, neck, and armpit. There is a lot on confusing information out there about this disease; right now we are operating on the assumption that there will be chemo involved (since he is symptomatic with lots of swelling in his leg/foot/glands). My question is this: what do we expect in the coming months with a chemo regimen? I've changed his diet to organic foods with juicing; does anybody have any suggestions about things that are helpful during treatment? I am very worried about this, and want to make sure that we are doing the right thing. We live in a pretty rural area, so there are not a lot of options in terms of second opinions, support groups, etc.

Thanks, I really appreciate any information you can give us.
Glennda

Comments

  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #2
    Glennda
    Welcome. My name is Beth and I have Follicular Stage 3 Grade 1-2.

    You want to know what chemo is like, it's different for everyone but I can give you feedback based on my own personal experiences. The first time I did chemo was back in 2006 and I had CVP+R which is Cytoxan, Vincristine, Prednisone & Rituxan. I had a multitude of issues, jaw pain from the vincristine for a few days, major constipation, ate everything not tied down due to the prednisone, no sleep for a few days too. Later on towards the end I had leg cramps, exhaustion/fatigue, chemo brain (i love this) and neuropathy in my fingers and toes. While all of this is very frustrating, it's also very doable. It did get better after treatments stopped.

    Chemo is nothing like what I had in my head, you know the nausea and vomiting half dead sterotype. They do have wonderful drugs to help and I never had issues with what I thought would be my problem. You need to drink lots of fluid, keep up your strength and LOTS of naps. Rest is very important.

    I've relapsed way too many times and am doing a chemo regimen called RICE, Rituxan, Ifosfamide, Carboplatin, Etoposide. I am exhausted with this one because it really does a number on my wbc, rbc, and platelets. Of course I am bald and I love not having to care for hair, but I loved it the first time around too. This chemo is being done to get me back to remission and then go for a stem cell transplant.

    I am glad you are here, we have a terrific group of folks who can help ease your mind.

    Take care,
    Beth
  • Michele23
    Michele23 Member Posts: 168
    #3
    dixiegirl said:

    Glennda
    Welcome. My name is Beth and I have Follicular Stage 3 Grade 1-2.

    You want to know what chemo is like, it's different for everyone but I can give you feedback based on my own personal experiences. The first time I did chemo was back in 2006 and I had CVP+R which is Cytoxan, Vincristine, Prednisone & Rituxan. I had a multitude of issues, jaw pain from the vincristine for a few days, major constipation, ate everything not tied down due to the prednisone, no sleep for a few days too. Later on towards the end I had leg cramps, exhaustion/fatigue, chemo brain (i love this) and neuropathy in my fingers and toes. While all of this is very frustrating, it's also very doable. It did get better after treatments stopped.

    Chemo is nothing like what I had in my head, you know the nausea and vomiting half dead sterotype. They do have wonderful drugs to help and I never had issues with what I thought would be my problem. You need to drink lots of fluid, keep up your strength and LOTS of naps. Rest is very important.

    I've relapsed way too many times and am doing a chemo regimen called RICE, Rituxan, Ifosfamide, Carboplatin, Etoposide. I am exhausted with this one because it really does a number on my wbc, rbc, and platelets. Of course I am bald and I love not having to care for hair, but I loved it the first time around too. This chemo is being done to get me back to remission and then go for a stem cell transplant.

    I am glad you are here, we have a terrific group of folks who can help ease your mind.

    Take care,
    Beth

    Chemo
    Hi Glennda,Again welcome.I have Follicular low grade Bcell stage 3 Dx1995.Have been around awhile done loads of treatment.Way back when I first had Chop{1996-97} I found it to be quit exhausting.Although I "never" had bad nausea,I was very short of breath and had many of the other symptoms Beth listed.They tell you to eat smaller meals non spicy foods and lots of fluids,non alcohol mouth washes.I also have relapsed many times as the low grades continue to return.Get a journal,keep all the side effects listed and all the blood and scan reports.Depending on what treatment sometimes ya need to avoid crowds and malls.All in All I've had a good quality of life.Please keep us posted we will do best to answer your questions.Healing thoughts,Michele
  • Glennda
    Glennda Member Posts: 4
    #4
    Michele23 said:

    Chemo
    Hi Glennda,Again welcome.I have Follicular low grade Bcell stage 3 Dx1995.Have been around awhile done loads of treatment.Way back when I first had Chop{1996-97} I found it to be quit exhausting.Although I "never" had bad nausea,I was very short of breath and had many of the other symptoms Beth listed.They tell you to eat smaller meals non spicy foods and lots of fluids,non alcohol mouth washes.I also have relapsed many times as the low grades continue to return.Get a journal,keep all the side effects listed and all the blood and scan reports.Depending on what treatment sometimes ya need to avoid crowds and malls.All in All I've had a good quality of life.Please keep us posted we will do best to answer your questions.Healing thoughts,Michele

    Thank you for your responses
    Hi Beth and Michele,

    Thank you very much for getting back to us. Tomorrow is the big day at 11:30. I will let you know what the doctor has to say about the treatment and the pathological stage. Like most people, he is going to have to work during whatever treatment is prescribed; he is a automotive painter with his own small shop. It sounds like there is no way to sugar-coat it, it is going to be hell on his system. Peace and warm thoughts to you both, I will keep you posted.
    Glennda
  • KC13167
    KC13167 Member Posts: 215
    #5
    Glennda said:

    Thank you for your responses
    Hi Beth and Michele,

    Thank you very much for getting back to us. Tomorrow is the big day at 11:30. I will let you know what the doctor has to say about the treatment and the pathological stage. Like most people, he is going to have to work during whatever treatment is prescribed; he is a automotive painter with his own small shop. It sounds like there is no way to sugar-coat it, it is going to be hell on his system. Peace and warm thoughts to you both, I will keep you posted.
    Glennda

    Glennda's Husband
    Glennda,

    My name is Kellie, I have been in remission from Diffuse Large B cell NHL, stage 4 since Oct '10. There are many funding sources on line for those of us that have lymphoma. LLS has two. One offers only $150.00 per year. Their second one offers assistance with co-pays, doctors office and. Pharmacy, I qualified for $2000.00 a year. They have another program that offers assistance in paying your medical insurance premiums, i' m not sure what that caps off at. You don't need to be living in a card board box to qualify ! On the other hand, many folks have lost or remortgaged their homes in order to pay for the medical treatment they needed. Take a look on the web. There's much available there. Your oncologists office may have a list of programs as well. You may think that your finances and health insurance is great but, you never know what's coming down the road. Most sites will tell you to apply early after diagnosis. I am single and found it difficult to keep up with all the paper work, while getting chemo and having multiple weekly appointments. You should be a great help to your husband. In this regard. Kellie
  • Glennda
    Glennda Member Posts: 4
    #6
    KC13167 said:

    Glennda's Husband
    Glennda,

    My name is Kellie, I have been in remission from Diffuse Large B cell NHL, stage 4 since Oct '10. There are many funding sources on line for those of us that have lymphoma. LLS has two. One offers only $150.00 per year. Their second one offers assistance with co-pays, doctors office and. Pharmacy, I qualified for $2000.00 a year. They have another program that offers assistance in paying your medical insurance premiums, i' m not sure what that caps off at. You don't need to be living in a card board box to qualify ! On the other hand, many folks have lost or remortgaged their homes in order to pay for the medical treatment they needed. Take a look on the web. There's much available there. Your oncologists office may have a list of programs as well. You may think that your finances and health insurance is great but, you never know what's coming down the road. Most sites will tell you to apply early after diagnosis. I am single and found it difficult to keep up with all the paper work, while getting chemo and having multiple weekly appointments. You should be a great help to your husband. In this regard. Kellie

    We just got the diagnosis of
    We just got the diagnosis of Grade II Stage IV. It is in his bone marrow, but this will be addressed by the chemo from what the oncologist said. It has however, created a blocakge between his left kidney and bladder.
    It is a miracle, considering how scarce specialists are here in NE Arizona, that he can see a urologist tomorrow and find out if we can get a shunt (?) put in. He starts chemo in 10 days. Rituxan and Treasta.
    Kellie, thank you so much for the information regarding the financial end of things. No, our health care insurance is not great. We have just started the great battle of the bills. Best of health to you and all,
    Glennda

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