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my mother

Ok to start off this story. My mother got told she had lymphoma. Stage 3 and aggressive. She started treatment pretty quickly. The first treatment she was a trooper. Had a couple of here and there but most of the part. Her body did pretty well.  Well next round of treatment is doing a number. She having hard time holding down food even with the patch. Hair is coming out in a faster pace. Which we was told the first one is the hardest and rest of them get better. So question is do they? Other questions is my mother is one strong lady. Has pretty much everything thrown at her. I'm very proud of her. But I can only do so much and answer so many questions. I was hoping to find her a Freind that has been threw it or going threw it. Cause I think that's what she really needing now. I seen a lady walking down the neighborhood that has lost her hair. But don't know if it's rude to go ask if that's why. Millions of questions can be asked but heading it from someone that has walked the path sounds better than one that hasn't. 

Thanks Jeremy 

Comments

  • lindary
    lindary Member Posts: 710
    your mom

    There are many types of Lymphoma and each have their own treatments. Do you know what kind of lymphoma she has? What drugs is she being given to fight her lymphoma?

    Some people have more trouble with nausea than others. In my case I have not had any nausea.

    Hair loss is normal. Mine didn't start falling out until 29 days after my first chemo and then most of it was out within 2 or 3 days. I had bought some turbans & caps and have been wearingthem every since. 

    This site also has a lot of good resources about treatments and side effects. Once you know the details of your mom's lymphoma you can also look for the web sites particular to that type. I find it best to only look at ones where the data is no more tha 2 years old. Anything older may be outdate since there is a lot of research going on for lymphoma treatments. 

    Linda

  • lindary said:

    your mom

    There are many types of Lymphoma and each have their own treatments. Do you know what kind of lymphoma she has? What drugs is she being given to fight her lymphoma?

    Some people have more trouble with nausea than others. In my case I have not had any nausea.

    Hair loss is normal. Mine didn't start falling out until 29 days after my first chemo and then most of it was out within 2 or 3 days. I had bought some turbans & caps and have been wearingthem every since. 

    This site also has a lot of good resources about treatments and side effects. Once you know the details of your mom's lymphoma you can also look for the web sites particular to that type. I find it best to only look at ones where the data is no more tha 2 years old. Anything older may be outdate since there is a lot of research going on for lymphoma treatments. 

    Linda

    ditto

    Jeremy,

    Linda is spot-on with all of her observations.  To make any kind of informed comments we need to know the strain of the disease that she has, and what her chemo combination is (this is usually written as something like "EPOCH," "R-CHOP," "R-ABVD," etc.).  Her age and general health issuses are also important. How are her kidneys ? heart ?, and so forth.

    Almost always, nausea is pretty controllable with the right drugs. Is she getting the anti-nausea drug EMEND ? Ask. If they say no, ask why not.  I never had nausea during six months of R-ABVD taking EMEND.

    Generalizations:  Side effects for MOST people get worse as they receive more cycles of the drugs, and most people on any of the common lymphoma combinations lose ALL of their hair, usually within a few days after the second cycle (set of infusions).  Whoever told you that the first infusion is usually the worst gave you some very mistaken information.  Your doctors should be giving you all of this information regarding what to expect directly.  As I said, these are generalizations, and individuals at times have differing experiences. 

    The folks here can tell you more if you provide some more specifics.  I wish you and her well, and a full recovery. Lymphoma is usually beatable !

    max

  • lindary
    lindary Member Posts: 710

    ditto

    Jeremy,

    Linda is spot-on with all of her observations.  To make any kind of informed comments we need to know the strain of the disease that she has, and what her chemo combination is (this is usually written as something like "EPOCH," "R-CHOP," "R-ABVD," etc.).  Her age and general health issuses are also important. How are her kidneys ? heart ?, and so forth.

    Almost always, nausea is pretty controllable with the right drugs. Is she getting the anti-nausea drug EMEND ? Ask. If they say no, ask why not.  I never had nausea during six months of R-ABVD taking EMEND.

    Generalizations:  Side effects for MOST people get worse as they receive more cycles of the drugs, and most people on any of the common lymphoma combinations lose ALL of their hair, usually within a few days after the second cycle (set of infusions).  Whoever told you that the first infusion is usually the worst gave you some very mistaken information.  Your doctors should be giving you all of this information regarding what to expect directly.  As I said, these are generalizations, and individuals at times have differing experiences. 

    The folks here can tell you more if you provide some more specifics.  I wish you and her well, and a full recovery. Lymphoma is usually beatable !

    max

    note on Nausea

    I got this from a nurse who said she read it somewhere. Women who had morning sickness when pregnant are more likely to have nausea if they have chemo. I never had morning sickness which may explain why I have not had nausea. At least not yet.

    As Max said, there are drugs they can give to control nauesea. 

  • Scharfschutze15
    Scharfschutze15 Member Posts: 12
    Hi Jeremy,
    sorry to hear

    Hi Jeremy,

    sorry to hear you're both having such a hard time with it - I know it's hard to watch, too. My wife went through this during 2014.

    From my experience, the first session is commonly not too bad, partly because people expect it to be so, then things ramp up after the second. They may tell you it will plateau and get a little easier as the body acclimatises after the second or third but I'd say probably not. Many oncologists and oncology NPs aren't very honest about this issue. Most symptoms will likely get worse through 4 or 5 sessions then might level out somewhat. Remember chemo is heavyweight poison that's almost killing you to save you. It's likely to get harder after 3 and 4 and depending on the kind of regimen she's on (as noted above) it may continue to get worse as her body grows weaker. The exhaustion will likely become only more intense.

    You might consider this: if she's really struggling with nausea someone needs to advocate on her behalf (if she can't) for better anti-emetic medicines. The patches commonly don't work for many are among the most lightweight options. Talk to her doctor about zofran/ondansetron or phenergan in suppository or ideally liquid form. The latter is the only thing that would work for my wife but in liquid form; it lets her take little enough to control the nausea so she could still maintain some nutrition, without being knocked out. Either way, there are other options and you shouldn't let the doctor's dictate what help she gets here without a good clinical justification for denying a stronger medicine.

    The hair will commonly fall out between sessions 2 and 3. This can be really hard, especially for women. It can take some time to get used to this. I think the best you can do is reinforce that she's beautiful to you regardless, that you admire her stength and courage through this. Maybe talk about wig options - there are lots of very realistic wigs available. My wife (who now has a medium-long head of shiny black hair back) has a collection of different style/color wigs in our bathroom on the wall. They can be pricey but it's something that can really help you get through and manage some of the emotional toll of treatment. If your budget allows, you might consider treating her to such? I don't know much about them, myself, but we shopped for a couple online and bought a couple in oncology hospitals. She might find something that would work for her here: http://www.wigs.com/medical-wigs.html. It may help her to actually shave her head instead of watching it fall out over time, then move to the wig till it grows back. This is also something you might be able to help with?

    On your last question - no, I don't think it would be rude to discreetly ask your neighbor so long as you explain why you're asking in the question. If they've had cancer and chemo then they're very likely to be willing to help. I don't know if not might not be a bad time, if she's in the middle of treatment too, but then again they may find support in each other. I think if you ask the question delicately it can do no harm. Others might disagree, however.

     

  • lindary
    lindary Member Posts: 710

    Hi Jeremy,
    sorry to hear

    Hi Jeremy,

    sorry to hear you're both having such a hard time with it - I know it's hard to watch, too. My wife went through this during 2014.

    From my experience, the first session is commonly not too bad, partly because people expect it to be so, then things ramp up after the second. They may tell you it will plateau and get a little easier as the body acclimatises after the second or third but I'd say probably not. Many oncologists and oncology NPs aren't very honest about this issue. Most symptoms will likely get worse through 4 or 5 sessions then might level out somewhat. Remember chemo is heavyweight poison that's almost killing you to save you. It's likely to get harder after 3 and 4 and depending on the kind of regimen she's on (as noted above) it may continue to get worse as her body grows weaker. The exhaustion will likely become only more intense.

    You might consider this: if she's really struggling with nausea someone needs to advocate on her behalf (if she can't) for better anti-emetic medicines. The patches commonly don't work for many are among the most lightweight options. Talk to her doctor about zofran/ondansetron or phenergan in suppository or ideally liquid form. The latter is the only thing that would work for my wife but in liquid form; it lets her take little enough to control the nausea so she could still maintain some nutrition, without being knocked out. Either way, there are other options and you shouldn't let the doctor's dictate what help she gets here without a good clinical justification for denying a stronger medicine.

    The hair will commonly fall out between sessions 2 and 3. This can be really hard, especially for women. It can take some time to get used to this. I think the best you can do is reinforce that she's beautiful to you regardless, that you admire her stength and courage through this. Maybe talk about wig options - there are lots of very realistic wigs available. My wife (who now has a medium-long head of shiny black hair back) has a collection of different style/color wigs in our bathroom on the wall. They can be pricey but it's something that can really help you get through and manage some of the emotional toll of treatment. If your budget allows, you might consider treating her to such? I don't know much about them, myself, but we shopped for a couple online and bought a couple in oncology hospitals. She might find something that would work for her here: http://www.wigs.com/medical-wigs.html. It may help her to actually shave her head instead of watching it fall out over time, then move to the wig till it grows back. This is also something you might be able to help with?

    On your last question - no, I don't think it would be rude to discreetly ask your neighbor so long as you explain why you're asking in the question. If they've had cancer and chemo then they're very likely to be willing to help. I don't know if not might not be a bad time, if she's in the middle of treatment too, but then again they may find support in each other. I think if you ask the question delicately it can do no harm. Others might disagree, however.

     

    Wigs

    After I got my diagnosis and chemo schedule I started looking a WIGs at the TLC site, part of ACS. Two things got to me - price and the care items I needed to take care of the wig. I knew a good wig is not cheap. I also know you need a stand for it. But then there was the cleaning and stlying stuff. My hair is straight and long, wash and wear. So I went rebel and flipped over to the turbans. I got some from TLC and from Headcovers, along with scarves and other descorations. Had fun wiht some of my co-workers who would comment if a paticular combination really looked sharp or 'forgot that combination'. I will say there is one turban I got that I thought would be a dusty green color. When it arrived it's more of a brownish-green. Doesn't reall go with any work clothes so I wear it around the house and to me chemo sessions.