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Thread: Chemo side effects

  1. #1
    Senior User dizzylizzy's Avatar
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    Chemo side effects

    I know that the side effects are different for everyone and it makes it fairly scary really not knowing what will happen. I was just diognosed with Hodgkin's Lymphoma and have not begun treatment yet but will be doing so shortly. Hearing alot about side effects such as nausea, hair loss and even infertility. How many rounds of chemo before it begins effecting your hair? What kind of foods did people find tolerable? Just looking for first hand experiences to help ease the anxiety a bit.

    Thanks

  2. #2
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by dizzylizzy View Post
    I know that the side effects are different for everyone and it makes it fairly scary really not knowing what will happen. I was just diognosed with Hodgkin's Lymphoma and have not begun treatment yet but will be doing so shortly. Hearing alot about side effects such as nausea, hair loss and even infertility. How many rounds of chemo before it begins effecting your hair? What kind of foods did people find tolerable? Just looking for first hand experiences to help ease the anxiety a bit.

    Thanks
    First you need to know what chemo you will be getting. Its probably ABVD. RE nausea ABVD is not too bad. Ginger helps, I found sipping dry ginger ale was great, but if it becomes a problem you need medication You may or may not be given some anti nausea meds if so take them the minute you feel queasy, do not wait until you actually get sick, in other words be proactive with the meds. RE hair loss it is very likely you will lose your hair. Most people regardless of gender buzz it short ( it sorta clogs the drains otherwise) don't worry it will grow back. RE infertility plenty of people have had children after treatment, and this is the norm, but steps can be taken in case this is an area of concern for you. Re tolerable foods the general rule of thumb is eat what you like as your taste buds will be screwed up, but eat enough proteins.

    Hang in there the general consensus is that it is not as bad as its made out to be.

    Good Luck
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  3. #3
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    The answer to the nausea question depends on where you are in the world. Here in Europe, they give you anti-nausea drugs at the same time as the chemotherapy, so nausea is never a problem. Once when I was in hospital, another patient was sick after chemo because they'd forgotten to give him the injection (Emend?), and my oncologist said it was the first time in her career she'd ever seen anybody be sick.

    In some parts of the world (the UK?) they don't do it automatically but prescribe anti-nausea drugs for you to take.

    Eat normally, is the best advice, though you might find your tastes changing. It can be a bit like pregnancy - you suddenly find that some smells and tastes turn you off. Be aware that a lot of the nutritional advice that's given to people was written in the bad old days, when patients were throwing up all the time. The information hasn't been adjusted, so cancer patients are still being told to eat as much as possible - which leads, unfortunately, to weight gain which can be very hard to get rid of later. I know of one girl who was told she was too thin for chemo and to put on weight quickly. She dutifully ate spoonfuls of Nutella - and now complains about her 'chemo arse'.

    Having said that, chemo is not the time to diet!

    Re: fertility. I was also given a powerful hormonal drug to shut down my ovaries, in an attempt to protect them from chemotherapy. They asked me if I wanted to freeze eggs before treatment, just in case, and I said no. The reason chemo causes hair loss and - potentially - infertility is that it targets fast-dividing cells. Hair follicles and gonadal tissues are both fast dividing.

    Be VERY proactive on this if you are looking to have children. Many people get through chemo without damage to their fertility, but it's not something you want to risk.

  4. #4
    Experienced User LancashireLass's Avatar
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    Hi DizzyLizzy,

    Welcome from another newbie

    I had my first cycle of chemo on 21.2.11. I have had very few side effects but I did start to lose my hair last week. I did have my cut from shoulder length to just below ear length. Other side effect have included from time to time dry itchy skin, very very slight neuropathy in my finger tips and tiredness . I am having R-CHOP 21 and my next cycle begins tomorrow.

    As a newbie myself, the best advice I can give you is to listen to ChemoMan, Kermica and other senior users as they are the most knowlegeable, really helpful and very supportive.

    Wishing you well
    Michelle
    Age 48 (44 when first diagnosed)
    Diagnosed with Follicular Lymphoma 11th Feb 2011
    Stage 3B
    CT scan & biopsy from under arm
    Lymph nodes in neck, collar bone and under arms. Enlarged spleen.
    Weight loss & fatigue
    Treatment - R-CHOP 8 cycles 21.2.11 to 18.7.11

    2 Monthly Retuximab maintainence starts 12.9.11 for 2 years

    17.4.15 - Relapse confirmed

    I remember the RULES!!!!!

  5. #5
    Administrator Top User ChemoMan's Avatar
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    Hi

    Hearing alot about side effects such as nausea, hair loss and even infertility
    You can get eggs harvested but you need to do this quick before chemo. As Alexie said there are also other options which can be taken to protect your ovaries. Once you have chemo, the dice has been thrown and its down to luck. Discuss this with the doctor as soon as you can. Its always a good idea to write questions down as you think of them and take that to the doctors, that way you won't forget everything
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  6. #6
    Regular User
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    Infertility is what scares me the most.

    Usually, I think, they administer pretty strong drugs to combat nausea. Hasn't really been an issue with me.

    I think also my oncologist gives me steroids during chemo, so I have actually shot up in weight. The only food I find unbearable is those nasty fast food commercials like burger king or subway. Makes me nausea. Or, for some reason blueberry muffins, if it is very sugary. or grilled cheese for some reason.

    My hair, I cut it short as a precaution but never fully lost it. It fell out slowly and sporadically, but seems to have stopped and is even growing back. Not everyone loses it I suppose. My beard is even growing back.

    For the most part, I pig out on food.

  7. #7
    Administrator Top User ChemoMan's Avatar
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    Hi

    Infertility is what scares me the most.
    Infertility in males is uncommon with ABVD and most patients recover spermatogenesis
    I think also my oncologist gives me steroids during chemo, so I have actually shot up in weight.
    Definitely... the P in CHOP and the D in ABVD are steroids. In large doses they are antineoplastic ( a chemo drug). It stimulates the appetite and makes you look bloated and fat. Be careful I threw up for 8 and a half hours after pigging out because I was peaking on prednisolne. Its bloody hard to switch the uber appetite off. I put on 15 kilos in about 6 months after chemo. I found strong tasting or strong smelling foods nauseating during chemo.

    Good luck to all of us
    Last edited by ChemoMan; 03-19-2011 at 07:00 AM.
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
    Senior User dizzylizzy's Avatar
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    Location
    BC, Canada
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    Hello all sorry on the slow reply.
    I am meeting with a specialist in a few days so will discuss all the fertility options then. Looking forward to finding out my treatment and schedual. Becoming fairly high anxiety. Having a hard time really accepting this since I feel so healthy still. Want to soak up as much information as I can as I am finding it very comforting. It is so amazing to hear so many positive stories, gives me so much more hope for my self. Scared though. I know people mean well but I am prefering alot of alone time so I can process everything and do as much reading and research as possible.

    I will try to be as proactive as possible in regards to nausea. Still confused as to what to expect but I know everyone has an idividual experience so have to roll with it as it comes I suppose. Want to know as much about all symptoms and solutions so will know best how to deal when a problem arrives. I am already having trouble sleeping but think it is worry induced. As soon as my eyes close all I think about it needles and chemo... also many late nights researching!

    I know that chemo can make it much easier to get sick. I am working as a nanny right now (usually also lifeguard and teach swimming but am on an extended leave) so I am around kids and am curious if that is still ok. During the summer the 3 kids I work with wont really be exposed to other children so possibly less likely to pick up bugs? I am really hoping to remain working as I find it highly enjoyable and need to keep a little income if possible, but am willing to take a leave/terminate position if I feel it is putting me at risk.

  9. #9
    Regular User
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    Lizzy,

    Here is a well written ABVD for newbs that will help give you an idea of what to expect.
    http://hodgkindisease.wordpress.com/...-to-get-chemo/

    I'm being treated at the Vancouver BCCA. For nausea I have been prescribed, Ondansetron (pre-chemo), Dexamethasone (pre-chemo and for two day following) and Metoclopramide (as needed). My oncologist said this is the typical antiemetic protocol given in BC. It will be adjusted if it is not effective enough or the side-effects are too severe. I haven't started ABVD yet (April 1) so I cannot offer any first hand knowledge.

    Merch
    Age: 26 | Male
    March 2011 | Nodular Sclerosing Hodgkins Lymphoma - Stage IVb
    April.. 2011 | 6 Cycles ABVD + SGN-35
    http://kickingthehodge.blogspot.com

  10. #10
    Senior User Dorney1's Avatar
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    Hi Lizzy,

    I was treated for stage 11b Hodgkins February last year. My treatment was 4 cycles of ABVD plus 30gy radiation.

    I will imagine, if you're stage 1, you will also do 4 cycles (8 treatments) of ABVD but without radiation therapy. Alternatively, there are a number of clinical trials at the moment looking at reducing treatment options and I have heard of some stage 1 people only doing 2 or 3 cycles.

    Anyway, I appreciate this is a scary time but try and think of chemo as your friend. At stage 1 NSHD without symptoms, you have the best possible diagnosis in terms of cure rates. The cure rate is in the high 90% mark so it's highly likely that one day this will all be a distant memory and while it will undoubtably be a difficult few months, stay strong, try and stay positive and use this forum - it's a highly valuable tool.

    Also, the other thing I'd mention, which no one did to me, is ENJOY your free time. This ordeal will provide you with a lot of free time, a lot of it alone. I spent far too much time thinking I should act like a sick person and it wasn't until a bit further in to treatment did I realise that I had a lot of time to do simple things that normally doesn't allow. It also provides a great deal of time for introspection and gaining perspective. A lot of us come out the other side as different people.

    As for working with kids, check with the doc but it's likely to be a huge no-no. I was told to stay away from sickly people and kids carry the most germs. I was told to quit work on the basis I have to get a tube/subway to the city and it's a breeding ground for germs.

    Hope this helps....any other questions just ask.

    James
    Diagnosed Mixed Cellularity Hodgkins Lymphoma 1st February 2010. 4 cycles ABVD and 30 gy radiatiotherapy. NED.

 

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