My father in law was diagnosed with hodgekin lymphoma 3bs...
He is quite ill and very weak. He has lost an extreme amount of weight. He was having his first round of chemo today. I would like to know who has had this and hear your story. I am worried because he is so weak even befor echemo that he will not have much fight in him...
Hi Carebear3, I am sorry for what your father-in-law is going through. Although, I do not have direct experience with this, I am here to help you in any way that I can. Your father-in-law is in my thoughts and prayers.
Last year in September I was diagnosed with Hodgkin's Stage 3B, high risk. I had noticed in January of 2010 that it sounded strange when I cough - I referred to it as my "death rattle" cough, because it had a strange reverb quality to it. I wrote it off as the lingering affects of a cold, and thought nothing of it. It remained consistently, every time I coughed. I assumed I had pulled a muscle or something in my chest, and once again thought no more about it.
As the year progressed, I moved into a new apartment and began to experience intense itching in my hands, feet, and across my stomach. I assumed that I was allergic to something in my apartment and (you guessed it) thought nothing of it. I also began sweating profusely in the night. I assumed I was just too hot, and got rid of most of my blankets and cranked the A/C up to "super cold" every night. I was tired and cranky, because I just didn't feel myself, but I'd gone through a serious breakup shortly before my cough sounded funny, and just thought I was depressed. It wasn't until I went to visit my brother and his family, and began coughing all the time, that I was concerned. I was very worried that I'd exposed my niece (who was only 1) to whooping cough.
I went to see my doctor, who did a whole gamut of tests on me, from blood tests to a chest x-ray. It was the chest x-ray that revealed a blurry mass spread across the top of my chest - almost the size of a football. Needless to say, life has been very exciting since then.
One thing you should know is that Hodgkin's is very reactive to chemotherapy drugs. Honestly, after two doses of chemo, I was breathing easier, I was no longer itching, I was sleeping better, my cough went away, and the night sweats abated. I was sick and listless because of the chemo, but I did feel stronger and better than I felt coming out of diagnosis. As chemo progressed, I felt sicker and sicker with each dose, but as I recovered (before the next dose), I felt stronger and better. Never normal, or totally healthy, but stronger and better. It will help, and it's worth the struggle and the pain.
If you can, I would recommend going with him to chemo. It helped me to have a hand to hold, and someone else's strength to lean on when I was feeling scared or weak.
Also, if he's going to be treated with ABVD (I would be surprised if they didn't start with this regimen), I'd recommend bringing mints, gum, or some strong-flavored candy for him to suck on during the administration of the "A" part - it's a dark red drug that many people can taste or smell.
I was treated with ABVD for four months, and escalated BEACOPP for 2. I'm now moving on to radiation therapy, and my prognosis against Hodgkin's is very positive, and my doctor is hoping for complete remission.
I hope I didn't talk your ear off too much - and I hope something in this helps.
thanks so much to both of you, I really appreciate your support.
Stratafied, your info is very helpful and reassuring. He has done well with his first round of chemo. the next round is in 2 weeks. I will definately pass on the info about the gum or mints.thanks
I just wonder if it is in his spleen does it make it worse...
Hi Carebear3 - I had similar to Stratafied. I began to feel weak and tired, and thought I was unfit. One day, I decided to try running around my block. I turned back after 50 yards. Shortly after, I coughed up a bit of blood, and headed for the doctor. Then I lost 15kg in a couple of months. By the time I got to hospital, my wife had to help me from the lift to the ward.
The reverse was just as dramatic. One blood transfusion later, I felt a lot better. Not only did I pick up with the chemotherapy, but I lost my arthritis of several years for a while. The one thing I never got back was the weight. Which is good. Don't panic!
Okey... but he was small to begin with as looks so frail.
I really appreciate people commenting on their stories...
I must say I did not think he would make it, but your stories and others I have read on here are very encouraging.
carebear3 - I had whithered away to a shadow of my former self, but in this case, size is not important. A blood transfusion set me up for the treatement.
I posted a description of what to expect with chemotherapy on an earlier thread, “Hodgkins lymphoma diagnosed and began” was the heading.
Oh yes - didn’t notice first time. I had it in my spleen. It was no big deal. After the chemo, they irradiated it, just in case.
Okey, I know they had to give him two blood tansfusions a week before chemo because they were before they did the biopsy his blood was way too thin.
Your information is very helpful... thanks so much for sharing it. If you do not mind my asking what stage did you have?
My husband is 34 and has stage 3bs also..he starts chemo on thursday... dr says he has good odds and he is very positive...hopefully the avbd therapy does the trick...hope your father in law is ok!
Carebear3 - you know, it's so long ago, I forget my stage. I had it in my mediastinum, it was bulky, and in my spleen, so I must have been a 3bs or more. I had two transfusions to get me up to scratch before surgery and chemo, 4 units then 3 units, with a further 3 units part-way through the chemo. This sounds like your father in law to me, and I hope this encourages you and him. There are no guarantees, of course, but the treatment is well established. The advances have been in diagnostic tools, I guess. The great majority of patients will be cured, first time. I was treated by the much-maligned (yet truly wonderful) British National Health Service - the good ol' NHS. Think how much better it will be in space-age America!
Shanna 44 - same goes for your husband, and he is 11 years younger than I was, which is good for him.
Stratafied makes some good practical points. Every chemo patient should be accompanied on Day One. A voyage into the unknown will frighten any non-astronaut. Not only that, he will be given a great deal of information, and a secretary with pen and paper might recall something important later. Once the needle is in, though, the excitement is over. You have three hours to kill, so don't forget a newspaper and a book. I brushed up my French whilst I was in treatment. One of the drugs turns your urine a vivid red colour temporarily, this is normal, not harmful, and a good place to start when someone asks what it was like.
I didn't think of mints or gum, but good idea. The chemo messed with my taste buds, leaving a faintly metallic tinge to everything for a few days. I used to love hot curries and chillis, but not now. It's my son's birthday today, we are going to his favourite Indian restaurant tonight. I shall take a walk on the mild side.
I came home from my first session with two big bags of drugs. Some had to be taken daily, some alternate days, some before food, some after, and the only way I could keep track was with a timetable, written in a spreadsheet. This, by the way, was only for the first couple of treatments.
After Day One is done with, your father in law, and shanna44's husband, may feel they can better flirt with the nurses if you aren't around. Let them decide - if they are happy to go alone, let them. I drove to my appointments most of the time, although on a couple of nice days, I walked. It was less than 2 miles, but it was harder going home, I admit. Especially as the first half mile was up one of Bristol's less forgiving hills. So take money for a bus or cab if you do this, or make a call for a car when the nurse fits the last bag of drugs to your line.
Having said all this, my wife says the thing I remember most about my first chemo was being given the wrong lunch. That speaks volumes.
Shanna 44 I hope that things go good for your husband, I feel so much better about things since I joined this message board. Good luck.
Tony K you have been so helpful... thanks again.
If you have all been visiting this thread for 5 months , hoping to see if I found out my stage, then wait no longer. I asked today, when I went for my annual.
I was Stage 3 BE when staged. Since treatment, I have been a Stage Zero, a happy place to be!
My husband was diagnosed 3A in June of last year. He was in remission after the first three cycles and did three more just for good measure. He is doing well now!