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  • Still feeling weak 3 months post ABVD

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    Old 11-05-2008, 03:28 AM   #1
    lymphpre
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    Still feeling weak 3 months post ABVD

    I'm now coming up to 3 months since the end of my R-ABVD, and still feeling rough. I think I've adapted quite well to the shortness of breath, which I know won't improve as it's due to scarring. I still feel really hot, sweat profusely, and get lots of headaches and light-headedness: this was there pre-chemo, and is what I have been referred to a general physician for.

    However, I also still feel really weak, and get tired easily. This, I think is due to the chemotherapy, and was definately not there before. I'm working just afternoons at present. Yesterday, I worked 1-4.30, came home and cooked dinner, after which I had a headache. I sat down at 7.30, and slept until 9. Got up for an hour, at which point the headach came back and I went to bed. Today, no headache yet (they tend to come on afternoon/evening), but still feeling really weak and tired, despite only getting up at 10am.

    Can this really be me still recovering from the ABVD? Oncology don't seem particularly interested as the HD is apparently in remission, and now suggest I go to my GP when I phone them up (it really is astonishing how little support you get with this, considering the enormous effects of treatment for lymphoma). Should I be pushing myself to do more exercise, which is what generally seems recommended for post-chemo fatigue? I really don't feel that things are improving at all.

    Simon

    Last edited by lymphpre; 11-05-2008 at 03:30 AM.

     
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    Old 11-05-2008, 09:34 AM   #2
    singer78
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    Re: Still feeling weak 3 months post ABVD

    Simon,
    It's good to hear from you, and I'm so sorry you're still having a rough time.
    With your first treatment (years ago?)..did it affect you this badly?
    They always say "everyone's different" and reacts to chemo/radiation differently.
    I've come to believe this is definitely true.
    In my case, I had no idea it would take me almost a whole year, before I would start feeling remotely "normal." I felt "flu-ish" for months after being in remission, and of course, I had breathing problems, too...along with a multitude of other problems.

    I know what you mean, about our doc's not being as "hands-on" as they were, before you go into remission. I think their first priority with everyone, is to erradicate the cancer, and when (and if) that happens, you're no longer "top" priority.
    It now becomes one's own responsibility, to a degree.

    Yes, I do think whatever exercise you can muster---whether it be walking, sit-ups, yoga, stretches....anything to move, will help. Are you doing deep-breathing exercises, too? Our bodies are designed to heal themselves....I have scarring, too, in both lobes--but, I'm a firm believer that my singing (sometimes power-singing) is strengthening them.
    Are you on any medication for breathing?
    It could be, also, your med's are making you feel tired.

    Remember, too...drink LOTS of water. Flush your system with at least 2 liters of water daily. I have to remind myself daily.

    I wish I could say and do more for you. My heart goes out to you. This is all so hard. Only someone that has "been there" can truly relate....and even then, I realize your situation is so different from mine...but, nonetheless, my friend, hang in there. With every passing day, you're getting stronger.

    God Bless,
    S.

    Last edited by singer78; 11-05-2008 at 09:35 AM.

     
    Old 11-05-2008, 01:22 PM   #3
    lymphpre
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    Re: Still feeling weak 3 months post ABVD

    HI Singer,
    thanks for replying.

    No, my previous chemo did not affect me this badly, which is why I cannot understand why I feel like this. With the last one, the first month was really bad, because my bloods were still low, and I had several infections and needed a blood transfusion. However, by about three months post I was pretty well back to normal: running, circuit training etc. Some residual digestive problems, of the IBS kind, but other than that, nothing. I even took up kick-boxing for a couple of years, just because I could. I really did not struggle with anything, and about the only long-term effect I noticed was that my memory was never quite as sharp again. That only became a problem when I was stupid enough to do a diploma that was assessed by exams!!

    I know that I'm 10 years older, and second chemo is supposedly worse than the first, etc etc. But is it really supposed to be this hard? Not that I want to particularly, but I haven't even put back on much of the weight I lost during the treatment.

    I know you said once before that it took you a year to feel ok again. That's such a long time, when you consider you have lost so much time already whilst undergoing the treatment. It all just feels like such a struggle. During that year, did you feel a progressive improvement? I just feel like I'm not improving at all, and in some ways going backwards.

    Best wishes
    Simon

    Last edited by lymphpre; 11-06-2008 at 01:34 AM.

     
    Old 11-06-2008, 08:04 PM   #4
    singer78
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    Re: Still feeling weak 3 months post ABVD

    Simon,
    In some ways, yes...it felt like I was going "backwards," too.
    I had no idea chemo/radiation was so difficult on one's body.
    Of course, again...different reactions occur in different people.

    When I developed pneumonitis, I swear...I have NEVER coughed so much in my life.
    It was an unproductive cough, too---which made it perplexing.
    I know I've bored you before with my plight...but, my Onc thought I had the flu for 3 months! Consequently, I was being treated with antibiotics, etc....which did absolutely nothing. I also developed a "rather large" gallstone---and the "achiness" that I felt, until August, was only relieved by massive amounts of Tylenol or Advil.
    It's not until "now," that I'm feeling somewhat normal---and even now, I'm not totally up-to-par. I think my official remission date was December 7, 2007...
    So, I'm slowly approaching my first year.

    But, just realizing that the cancer is gone is a major feat....
    Everything else should pale in comparison.

    We're alive and working toward staying healthy.

    One day at a time, my friend.

    Remember how much positive thinking plays a part in one's healing.

    Singer
    p.s. I'm sorry...I forget...did you see your Pulmonary Specialist? Are you doing anything, outside of med's, to help with your breathing?

    Last edited by singer78; 11-06-2008 at 08:08 PM.

     
    Old 11-07-2008, 03:13 AM   #5
    lymphpre
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    Re: Still feeling weak 3 months post ABVD

    HI Singer,

    thanks for your post. Positive thinking is so difficult, but I am managing it a bit more these days. There are a lot of really good strategies you can use post crisis, but not mid-crisis, and the last year has been a state of permanent crisis. Even though being back at work is making me realise just how fatigued I am, being there does make me feel a little bit more "normal" again. Even silly little things that we take for granted, like being in a room full of people, feel like an achievement.

    Your posts are really helpful to me. If I can appreciate that other people experience such difficulty after chemo, and that it could all be part of a recovery process, it stops me speculating about what other as-yet undiagnosed pathologies are about to disable or kill me.

    The pulmonologists are not actually doing anything at the moment, other than repeating the PFTs in a couple of weeks. Initial plan was to just repeat them in 6 months. They are not prescribing any meds, because their stance is that my lung function is still quite good, with only the gas transfer score (DLCO) being low. It almost seems like they consider that score unimportant, even though they know from the scan that fibrosis is present. The breathlessness is still there, but I think I have acutally adapted to that quite well. The tops of my lungs do hurt when I take a deep breath, or when I am breathing heavily, and I cough a bit in the mornings: I notice this far more than the breathlessness. But overall, if the breathing does not deteriorate (and I realise that is an enormous "if"), this is something I can deal with. I have asked for a second opinion from another pulmonologist, but I suspect it could be six months or more before that appointment comes through.

    I spoke to someone else recently, who had undergone ABVD, and continued to feel even worse after treatment finished. He's four years post, and said it took almost two years for him to feel really good again. The health system just does not prepare you for any of this, although I suppose the majority of people do not experience this many problems.

    Take care
    we'll speak again soon.
    Simon

     
    Old 11-09-2008, 09:58 PM   #6
    singer78
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    Re: Still feeling weak 3 months post ABVD

    Just wanted to pop on and say "hi."

    I won't have access to a computer for awhile, & just wanted to wish you well in your healing process.

    I,myself, am trying to continue working and keeping my stress-levels at bay.
    I have a lot of family issues right now, and I'm trying very hard to stay centered.
    My husband, and both my parents have some medical issues at hand.

    In the meantime, remember to nurture yourself.
    There was a period of time that I was considering accupuncture.
    Maybe you might benefit from some alternative methods?--Might be worth looking into.

    Take care.
    I'll check back soon.

    Singer

     
    Old 11-18-2008, 10:06 AM   #7
    lymphpre
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    Re: Still feeling weak 3 months post ABVD

    Hi Singer,

    not sure whether to start a new thread, as I have a question about prednisolone. I had repeat PFTs today, and my lung function had continued to decline quite markedly. A second radiologist has also reviewed my scans, and decided that I do have bleomycin-induced lung toxicity, and that the probable fibrosis is not due to the radiotherapy I had 15 years ago after all. In light of this, I have been prescribed prednisolone.

    I know it often does not work, but if it is going to, how quickly might I expect to feel a result?

    Best wishes
    Simon

     
    Old 11-18-2008, 10:51 AM   #8
    singer78
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    Re: Still feeling weak 3 months post ABVD

    Hi.
    It's always nice to hear from you.

    I, myself, noticed I was breathing better immediately on prednisone...but, the scans didn't show improvement for a few months.
    Are you starting off at a large dose and tapering to a smaller one?
    I started off at 60 mg. for a few days, then 50 for a few days...until I got down to about 10 mg. daily.
    I repeated the whole process again, since they thought it was the flu.
    When the scans showed it was pneumonitis, I was on a steady dose of 10 mg. for months.
    I "still" have a bit of wheezing, and it's been almost a whole year.
    I added "combivent" (an inhaler) and am still using that....as a matter of fact, I woke up in the middle of the night and used it.
    I'm so sorry you're facing this.
    Are the doc's telling you it will get better?
    I would imagine any steroid will help with the inflammation in your lungs.
    I really didn't care much for the side effects.
    You may feel none...but, in my case, it messed with my appetite.
    I just didn't ever really feel hungry---although I did not lose any weight.
    Go figure. There's side effects to everything, and you have to weigh your options.

    The best of luck to you.
    Hang in there.....
    I'm "hanging" with you....
    Singer

     
    Old 11-18-2008, 03:50 PM   #9
    lymphpre
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    Re: Still feeling weak 3 months post ABVD

    Hi Singer,
    thanks for the reply.

    I am starting off at quite a low dose, 30mg, because I found it a very difficult drug to tolerate when I had it as part of my chemo 11 years ago. It made me feel highly anxious, and unable to relax. My apetite also decreased rather than increased. I stay at this dose for 4 weeks, then repeat PFTs. Pulmonologist said if there is no improvement, we will have to increase it. She does not seem particularly clear about what she is doing, but fortunately my appointment for a "second opinion" has come through for next week, so I might fare better there. With regards prognosis, she said she is "optimistic" the pred will improve my breathing: I suppose it depends on how much is true fibrosis and how much is inflammation. Although a good radiologist can evidently distinguish the two, my scan report did not attempt to do so.

    Cannot deny that I am dreading this, but I will try it anyway, as things are clearly heading in the wrong direction without it.

    Best wishes
    Simon

     
    Old 11-18-2008, 04:42 PM   #10
    singer78
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    Re: Still feeling weak 3 months post ABVD

    Hello,

    I'm glad you're getting the 2nd opinion.
    2 head's are better than 1, that's for sure.

    I can imagine how you feel, knowing the side effects of Prednisone, yet realizing you should try it, to help with your breathing. Since you know it makes you irritable and anxious, why don't you ask for something for your nerves? I found xanax helped a lot, and I could still function.

    Keep me posted...
    S.

     
    Old 11-19-2008, 01:34 AM   #11
    lymphpre
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    Re: Still feeling weak 3 months post ABVD

    Thanks Singer,
    I do not know that one. Last time I was prescribed lorazepam, which I find quite effective. But it's addictive, you build up a tolerance really quickly, and it makes me drowsy. I will quickly look up what xanax is. We may not even have it in the U.K.
    Best wishes
    Simon

     
    Old 11-19-2008, 09:07 AM   #12
    singer78
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    Re: Still feeling weak 3 months post ABVD

    Hi,

    The generic form is "alprazolam."

    I believe it's milder than what you spoke of, and doesn't stay in your system as long.
    Of course, everyone's different.

    As always, the best of luck to you.

    Singer

    Last edited by singer78; 11-19-2008 at 09:08 AM.

     
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