My wife

EB303

LacieAnn728 said:

Sounds like she’s in good hands!

i been reading through this thread & have to say it sounds like she has great doctors and that is a relief when you are going through something so scary! I will say that ABVD which is what I was on has minor side effects basically stuff you can handle. With the Bleomcyin they might only give her a few doses and take it out. They did that with me. Wishing your wife & your family best wishes and hope you get all your answers soon! 

Thanks LacieAnn! Wishing you

Thanks LacieAnn! Wishing you all the best as well.

Cheers,

EB

EB303

Official Diagnosis

Just wanted to pop in an update to complete the thread. Her official dx is Lymphocyte Rich Classical Hodgkin's Lymphoma.

From what I (very quickly) read, LR occurs in only approx 5-10% of cHL so a bit rare. Also of note, sometimes NLPHL is misdiagnosed and later found to be LRcHL. This makes sense to me as they kept saying "suspicion" of cHL but really needed that last NLPHL test results. Her doc was very meticulous about this before treatment.

Her first treament was this past Thursday. She handled it well but side effects seem uncommon in both timing and areas effected. We were under the impression the day after would be worst, then following two days only slight improvements but then by the 4th day should start trending back to norm. It's just the start but it seems the opposite. Only effects so far: very sensitive inside her mouth and throat; and dizziness. Fatigue is on and off.

1 down, 7-11 more treatments to go!

 

Max Former Hodgkins Stage 3

None

EB,

Do not read anything into her timing of reactions. The main thing that can cause alarm is fever, so monitor that.   I understand you are using ABVD.  CHOP is a bit more predictable, in that the Prednisone cycle of days is fairly standardized.  But as we have discussed, ABVD has no Prednisone or steroid, so the reactions are more random.

My R-ABVD infusion day lasted about 8 hours, and when I got home around 5:30 PM, I just crashed and slept until the next morning, except for occasional runs to the bathroom to pass that massive amount of fluid.  Urine runs pink for 24 to 48 hours.  My worse days were probably 2 through 4, but memories fade.

Also, as I mentioned, after two infusions my experience seemed mild enough for me to go back to work, which lased about 2 weeks. After 4 infusions, the bottom fell out, and I just slept all day, every day.  No way I could have worked part time, from home, anything.  I slept around 17 hours every day, regardless of where I was in the cycle.... Most sleep less.

Do not read a ton into her first few days or even weeks.  Effects are cumulative, and worsen for most. I'm just being honest.

Mouth sores are common, but I never got any; I have no idea why. I did not take any special precautions for them.  Some patients develop what is called Flu-like Syndrom -- I did.  I felt like I had the flu for 5 months. Yuck, I know.

I also lost all sense of taste, not the norm, but some taste changes occur for most; the so-called "metal mouth" sensation. This by itself will reduce appetite.  I did not get "metal mouth," but rather "salt mouth": my mouth felt full of salt all the time.

My other worst reaction was neuropathy: numbness of hands and feet. This is worse in the cold.  Mine never cleared, 5 years later. Most neuropathy does clear for most individuals who develope it. Mine did mitigate a little after about a year.   And my taste sensation did return after the end of treatment.

Dizziness is less common, but does not surprise me.   Let her rest all she wants for these months. This is not fitness training time, this is live through an ordeal time.  Some writers (NOT you !) seem to think that it is "moral weakness" to get physically weak; that they have to not let the treatments affect them.  This  is an absurd and medically wrong view of things.  Prep for a marathon later.  All the sleep she wants she should get.  Expect it, and then possibly there will be nice surprises.

There is a universal truism that is worth mentioning now also.. Oncologists know that severerity of side-effects (or lack thereof) are no indication of chemotherapy effectiveness.  That is, a patient who has severe side-effects might get poor results agains the disease, and a person with no side-effects might have spectacular results. Or vice versa. Side-effects just are not linked to how successful treatments are, one way or the other.

max

EB303

An update!

Sorry I essentially fell off this grid over the past few months. While my wife was battling, I was essentially a single parent and didn't have much time sign on. Fortunately, good news to report! Wife's laft treatment was in mid April. First scans, post chemo, were in May and came back all clear.  She's feeling better and back to work. Next scan in Sept.

I want to thank those of you who responded to all my questions and concerns, especially Max & Po. You both put a lot of thought and time into your replies and they were incredibly helpful. I signed back in to CSN for 2 reasons - First to say thanks and provide an update. Since you were kind enough to help I wanted to at least let you know how it has panned out to date.

Second reason -  I will start a new post with that....

illead

So happy

I know how you feel, I am the caregiver also, my husband says he thinks in some ways it is harder on us.  I am so happy that your wife is doing so well and that you are getting on with your lives.  Thank you for the update.

Becky