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Hi Guys, I'm new to this so hope i'm doing it right. I have just recently been diagnosed with Hodgkins Lymphoma advanced stage 4. I started with the pains 3 yrs ago and have only just been diagnosed.
I've just had my 2nd dose of chemo (ABVD) and a blood transfusion and am so fatigued (plus my hair has just started falling out badly). I was expecting a bit of energy after the transfusion as i was anaemic but i still feel absolutely shattered. Is this common? Does it get any better as the body gets used to the chemo or not? I'm probably sounding really negative at the moment but its suddenly hit me how serious this is and stage 4 is not the best place to be. All my pre chemo symptoms have stopped now but i'm just very scared at the moment. ;-(
I have to tell you that with Hodgkins, the stage is not so important with regards to prognosis. The chemo will work the same on the 'lumps and bumps' regardless of whether you have 1 or 100. So my consultant told me when I was staged at 3a.
It's very common to feel tired post chemo. I certainly did - it took me a week to feel 'normal' again. Being scared is normal too... but one thing that made me feel better is something a doctor told me - being diagnosed with diabetes would have been much worse for me at age 20 than having the diagnosis of Hodgkins.
Ask your doctor about having something called GCSF after chemo to help your body recover from each round (if you're not already).
Hi Steph, Thanks for that. You have made me feel much better. I will ask about the GCSF next time. I'd been ok about it all up until yesterday and it had all kind of hit me and i suddenly kept thinking it was all going to go wrong for me. I have a 6 & 4 yr old which makes me scared thinking that they may have to grow up with no mummy. I guess these are normal feelings.
Hi may I ask you how you are doing today? WHich treatment did you go on? I am on the RATHL trial myself and today found out the ABVD has not done a good enough job and will now be going on Beacopp escalated... I like you feel so scared my 3 kids will grow up without a Mum and it terrifies me. I was sooo ok on the ABVD and I thought it would be a clear scan today.. I hope you are fine by now.
Hi Anni, I'm so sorry to hear that it hasn't done a good enough job but I am of the understanding that Beacopp WILL do a damn good job with a 90% success rate?? Had your symptoms gone with ABVD? Mine have, i no longer have itching, nightsweats, bone pain and my bloods are improving. I just had my 4th (2nd cycle) ABVD yesterday and am having my PET scan next Weds to see if has worked. I will find out the results the week after. I like you have been very ok on ABVD since week 4 onwards, almost normal except for my body feeling tired if i do too much. I am hopeful and thinking that it will be ok but my husband reminds me that if i move to beacopp it doesn't necessarily mean the ABVD didn't work its just a better option for my body.
It's so awful when you have children to think of, it's bad enough thinking you may no longer be here but to think they will grow up without their mummy is heartbreaking. I am scared of going for my results but also desperate to know either way so i can just go ahead and get myself sorted. I admit i'll be devasted if they say it's not been good enough but i just have to think, do whatever to get rid of it.
I really hope Beacopp is successful for you and please keep me updated.
Hi Jackie thanks for your email and I must admit it does help to know that there are other people going through the same thing even if I am sorry to hear that you too have to suffer through the same difficulties. I think it was a great advice your husband gave in terms of thinking of it as an unsuitable treatment - I think that's probably how it is. Some people just done respond as well as others. My consultant did say that I should not forget that I had indeed responded, and had it not been for the RATHL trial we would have never known that I was in the group which is at higher risk for poor outcomes. To answer your question yes I had gotten rid of my symptoms. The lumps on my neck were gone, my energy levels have been great and I have gained all the weight I had lost. I really thought it would all be gone but please dont take that as a sign that the same will happen to you. He said it is only 10% that don't scan clean so I hope you will!!! I am now getting mentally ready for the start of Beacopp next week. Will have a picc-line inserted on Monday. In a way I think we are 'lucky' to be on this trial because like my doctor said- had it not been for this early scan people like me would scan clean at 4 months and then have a greater risk of relapse at the end of treatment - but be unaware of it if you see what I mean. Now we get the opportunity to act on that information by escalating treatment. I really hope it will be ok thought and not too tough. Keep me posted how your scan goes!
I was diagnosed with HL Stage 4B in Jan and 12 doses of ABVD showed great initial progress, but failed to wipe it out. I am due to complete the final of 3 cycles of MINE salvage chemotherapy next week, and hope to see a clean result. Midway through the ABVD course, bleomycin (the 'B' in ABVD) caused lung damage which gives me breathlessness and giddiness after even basic exertion. Warn your doctors and omit bleomycin at the first sign of pain when breathing deeply.
Hi Jackie, just wanted to see how it went on your scan? I have been thinking of you and hope that you get to continue on the ABVD. I have now lived through the first week of beacopp- day 1-9 in fact. The first few days I must say were horrendous, probably mostly because I already had a stomach bug when it started so my stomach was empty and I felt weak already. Day 2-5 was actually ok. Stayed at home, played with kids and was running at about 70% This all changed on day 6 when I woke up feeling like someone had just drained all my energy. I have now been like that for 3 days - yesterday probably the most tired I have ever been after it was all topped up with day 8 infusions. Today I have been resting a lot and taken the first Neulasta shot to 'recover' the white blood cells. No side effects of that yet which is nice. I take comfort in the little moments of time when I feel good and I am actually feeling a lot calmer now it has all started, and I don't have to worry about the unknown. It feels like a very very tough regime but something I can go through with. The benefit is that now I will have 2 weeks of recovery time until the really tought infusion week starts again.
Let me know how you are getting on and really hoping you are still able to do ABVD! Annika
Hi and sorry to take so long to respond. Thanks for this I did ask them if they would be testing however they said not until it is all over with the chemo...hmm a bit strange I guess since by then the damage would be done. I hope your last chemo has gone well - is this it for you now or is there more to come?
Hi Anni, I am very happy to say that my scan was clear on Mon. I must say a huge thanks to you as before you had sent the message regarding your scan I was getting quite worried about it. However, after you saying it would have scanned clear if not for the trial, I was quite prepared for being told similar. You were a great help ;-)
Did you ask to see your scans? I did. which was good to see as i had seen the original one which was frightening as it had a lot of black areas (tumors) and now there was none.
You should try not to worry, (which is hard i know) but think positive as it sounds to me like this new treatment is gonna kick its ass!! you've already responded to ABVD so this is gonna finish it off. It does sound a really tough regime, hopefully once you start another round you may react better as your body gets used to it. My first dose of ABVD was a real shock to the system and absolutely floored me but got better after that. As you say at least you have 2 weeks recovery time and i hope you have raised energy levels as i know how important it is to try and be normal especially with kids.
I feel really lucky to have the results I wanted. I really do hope you are ok throughout this and that you get the results you want.
Keep updating me on your progress & when will you get a scan?
Take Care Jackie x
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