Husband with hodgkins
Comments
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AppetiteMrsF said:appetite
Lindary,
Thank you for your insight! It has been a challenge trying to find food he likes. To make matters worse a couple of weeks ago he had a "stomach thing" going on that he felt was brought on by dairy. He has never been lactose intolerant but both his sister and brother are so he made the correlation when his gut started acting up. The doctor told him it could have just been a bit of the stomach bug that has been going around everywhere but he is reluctant to put dairy back into his diet. So now I am also trying to find things he likes that are dairy free. Not the easiest job.
I too was trying to use spices to make things have more flavor for him but he says the spices don't set well with him, sweet seems to work better. So, a couple of nights it was pancakes for dinner! He does like fruit, fruit cups are a go to. I did have him drinking Boost and Ensure before the whole stomach thing so now I don't know what to do, they all seem to have a dairy base to them. Maybe the V8 is an option, they have different fruit flavors that might work!
If we can just get rid of the fever and get back on the treatment path I think we will be doing a lot better also!
It is difficult to find foods that are palatable. The only thing Jon would eat was blueberry pie.
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depression is here
just a note to vent a little..
My husband is 2/3 of the way finished with this scheduled 12 avd treatments for HL, and after #6 he received a clear PET, and remission.
that was great news and very positive, however....
the downside is that we have 5 tx to go..He is in the homestretch, but is very down and out, just wiped out! Eating and drinking is a challenge every day, and his positive spirit seems to have dissapeared.
He is off of his BP meds now, because of weight loss, and his bp is now a little low. And I do everything in my power to keep up the positivity, but sometimes I will go cry by myself, or call a friend, as to not upset him.I fear dehydration, as he hardly drinks water, but will sip gatorade, or milk is his drink of choice, milkshakes, ensure, boost,,etc...
his oncology nurse, says any liquid is good, as long as he hydrates.
Venting over, just thoughts or any additional suggestions are welcome.
thank you all,
Tammy
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Thoughtstambrak said:depression is here
just a note to vent a little..
My husband is 2/3 of the way finished with this scheduled 12 avd treatments for HL, and after #6 he received a clear PET, and remission.
that was great news and very positive, however....
the downside is that we have 5 tx to go..He is in the homestretch, but is very down and out, just wiped out! Eating and drinking is a challenge every day, and his positive spirit seems to have dissapeared.
He is off of his BP meds now, because of weight loss, and his bp is now a little low. And I do everything in my power to keep up the positivity, but sometimes I will go cry by myself, or call a friend, as to not upset him.I fear dehydration, as he hardly drinks water, but will sip gatorade, or milk is his drink of choice, milkshakes, ensure, boost,,etc...
his oncology nurse, says any liquid is good, as long as he hydrates.
Venting over, just thoughts or any additional suggestions are welcome.
thank you all,
Tammy
Tammy,
It is normal and reasonable to be down at this point. The same reactions happened to me. At three of 12 infusions, a CT showed my tumors had shrunk 60%. This meant that two more infusions should have been curative. AS I have written, I did not eat or get out of bed my last few months.
Chemo dosing is based upon extensive research. It is critical for him to finish all planned chemo, to dramatically lessen the liklihood of relapse. My "2 cents worth." He is not now being treated for lymphoma that can be seen on scans. He is now being treated for lymphoma cells that CANNOT BE SEEN on scans.
(Actual value of my opinion: 1 cent.)
max
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thank you maxThoughts
Tammy,
It is normal and reasonable to be down at this point. The same reactions happened to me. At three of 12 infusions, a CT showed my tumors had shrunk 60%. This meant that two more infusions should have been curative. AS I have written, I did not eat or get out of bed my last few months.
Chemo dosing is based upon extensive research. It is critical for him to finish all planned chemo, to dramatically lessen the liklihood of relapse. My "2 cents worth." He is not now being treated for lymphoma that can be seen on scans. He is now being treated for lymphoma cells that CANNOT BE SEEN on scans.
(Actual value of my opinion: 1 cent.)
max
thank you max
opinion value is $1mill!
Tammy
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all the best to you and yourMrsF said:Congratulations!
I'm so happy for you and your husband for the negative scan
That does make all the rest a bit more bearable!My husband has only had 1 treatment so far and the doctor could tell that it had already shrunk the tumor and the severe pain he was in prior to treatment had gone away! Unfortunately last week was supposed to be his 2nd treatment that was postponed for fever and yesterday we were to try again but still the fevers. The doctor does not feel it is tumor fever, he thinks that would have come on sooner after the treatment. So, he has run all kinds of tests to see if something else is going on; blood culture, urinalysis, x-ray, ultrasound. We hope to have some of the results tomorrow. Just hoping there is not something more serious than what we are already dealing with.
If we can just get rid of the fevers and get him back on treatment I think the appetite part will be a bit easier. If nothing else he is on prednison for 5 days after treatment which naturally increases appetite!
I hope all continues to go well for you and your husband with the rest of his treatments.
all the best to you and your husband, also.
prayers and thoughts for recovery..for everyone on this journey.
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Appetite /weight loss after AVBD
I know what you are going through...My husband was diagnosed in July of 2015 with HL...We were told he was in total remission after 6 rounds of A(B)VD = ( stopped Bleomycin after 3 due to "Lung issues ). His neutrophil count went down to >.01 then they started Neulasta. He hated the smell of cooking food...Loved Shakes At Arby's and Protein shakes. He lost almost 30 lbs. But we also all increased our H2O Very important...Fatigue was a Biggy... He would nap after coming down in the morning after Breakfast ! It will get worse with subsequent treatments. Be there for him let him talk when he wants VERY Important. We were " Lucky " He was retired. Let him do what he can when he can..He's continued to be in Full remission from the HL since Chemo ended in January 2016
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thank you so much for thatIslandgirl50 said:Appetite /weight loss after AVBD
I know what you are going through...My husband was diagnosed in July of 2015 with HL...We were told he was in total remission after 6 rounds of A(B)VD = ( stopped Bleomycin after 3 due to "Lung issues ). His neutrophil count went down to >.01 then they started Neulasta. He hated the smell of cooking food...Loved Shakes At Arby's and Protein shakes. He lost almost 30 lbs. But we also all increased our H2O Very important...Fatigue was a Biggy... He would nap after coming down in the morning after Breakfast ! It will get worse with subsequent treatments. Be there for him let him talk when he wants VERY Important. We were " Lucky " He was retired. Let him do what he can when he can..He's continued to be in Full remission from the HL since Chemo ended in January 2016
thank you so much for that Islandgirl.
He is trying to consume more h20 (he is not a water drinker) so that has been a challenge, but will do his best to drink other liquids..etc..
with only 4 tx left (out of 12), I hope an pray the bloodwork continues to hang in there..rbc is low, but no transfusion needed at this point, and wbc continues to be good (he receives Neulasta shot after every tx), plateletes are lower but Dr. has not addressed..etc.. We are confident he will be on top of the levels!
he (we) are hanging in there, nonetheless.
As you know, this has been life changing, and we continue to as positive as we can, since remission, and pray full remission will be the outcome, when we finish last tx on April 3!!
thank you again
tammmy
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Fevers, drinking and energy
After having a fever for almost 3 weeks and running a bunch of tests to check for infection the doctor determined the tumor was causing the fever and the only way to combat that was to continue treatments so last Friday my husband finally had his 2nd treatment 2 1/2 weeks after he was supposed to. The fever went away during treatment and so far had not returned!
He has 5 days of prednisone after each treatment so he has an appetite for about a week and then appetite and energy crashes after that. The one thing that came out in blood work was that his potassium and sodium were low, they gave him a couple fluid infusions with potassium plus he was on potassium pills for a couple weeks. The doctor felt he was drinking too much water and was diluting his blood. He advised he get fluid intake from more than just water; juice, broth, fruit, we also got him pedialyte. If you are not getting enough electrolyte, potassium and sodium that will also affect energy levels.
So, now we are just hoping he will be able to have his 3rd treatment on schedule the 24th!
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fluids, etc...MrsF said:Fevers, drinking and energy
After having a fever for almost 3 weeks and running a bunch of tests to check for infection the doctor determined the tumor was causing the fever and the only way to combat that was to continue treatments so last Friday my husband finally had his 2nd treatment 2 1/2 weeks after he was supposed to. The fever went away during treatment and so far had not returned!
He has 5 days of prednisone after each treatment so he has an appetite for about a week and then appetite and energy crashes after that. The one thing that came out in blood work was that his potassium and sodium were low, they gave him a couple fluid infusions with potassium plus he was on potassium pills for a couple weeks. The doctor felt he was drinking too much water and was diluting his blood. He advised he get fluid intake from more than just water; juice, broth, fruit, we also got him pedialyte. If you are not getting enough electrolyte, potassium and sodium that will also affect energy levels.
So, now we are just hoping he will be able to have his 3rd treatment on schedule the 24th!
good luck with the treatment!
thank you for the pedialyte suggestion.. My husband also likes Gatorade with a little Equal added to it, to enhance the taste =-)
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The doctor recommended thetambrak said:fluids, etc...
good luck with the treatment!
thank you for the pedialyte suggestion.. My husband also likes Gatorade with a little Equal added to it, to enhance the taste =-)
The doctor recommended the pedialyte (I got the CVS brand in strawberryflavor) he said the gatorade was all sugar :-/. My husband also likes the V8 Fusions, I got him strawberry banana because it's higher in potassium. He also likes fruit cups and Nestlé Outshine fruit ice pops and they all help towards liquid intake. I hope you find something that works for your husband!
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Drinkstambrak said:fluids, etc...
good luck with the treatment!
thank you for the pedialyte suggestion.. My husband also likes Gatorade with a little Equal added to it, to enhance the taste =-)
Remember Ensure and Carnation Instant Beakfast (numerous flavors). They kept me alive. We had a writer here a few years ago named Matthew Butts who had to be hospitalized due to emaciation, ended up fine as I recall.
I jokingly told people after my recovery who commented on how thin I was that I had "been on a $300,000 chemo diet."
.
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H2O
I was not a big water drinker before having cancer. I kept telling myself I had to drink it to flush out the unused drug and dead cells. My husband made sure we had bananas around so I had one 3 or 4 times a week. I do drink apple & orange juice (usually for breakfast) but water has become my main source of fluids.
A co-worker who had multiple myeloma always said that cancer was a hell of a way to lose weight! I was glad to have lost 30 lbs but have put some of it back on. Need to work on losing it.
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THANK YOU.MrsF said:The doctor recommended the
The doctor recommended the pedialyte (I got the CVS brand in strawberryflavor) he said the gatorade was all sugar :-/. My husband also likes the V8 Fusions, I got him strawberry banana because it's higher in potassium. He also likes fruit cups and Nestlé Outshine fruit ice pops and they all help towards liquid intake. I hope you find something that works for your husband!
THANK YOU.
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3 MORE avd infusions!lindary said:H2O
I was not a big water drinker before having cancer. I kept telling myself I had to drink it to flush out the unused drug and dead cells. My husband made sure we had bananas around so I had one 3 or 4 times a week. I do drink apple & orange juice (usually for breakfast) but water has become my main source of fluids.
A co-worker who had multiple myeloma always said that cancer was a hell of a way to lose weight! I was glad to have lost 30 lbs but have put some of it back on. Need to work on losing it.
3 MORE avd infusions! Hemoglobin very low, so my husband is very anemic. He will have a blood transfusion tomorrow per Oncol recommendation. =-)
to build up the count. Just experiencing some shortness of breath, but my husband has been tolerating the anemia at this point..
in the home stretch now, he is wiped out!
thank you all for your thoughts and experiences.
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a little freak out? almost done...
My husband has his #10 out of 12 AVD infusions (doc removed bleo a few chemos ago) this Monday. With a 'remission' diagnosis after #6, which was great news, however, he still has a way to go....and still is most difficult as you all know.
I don't want to freak out, but he has had 2 nights of of sweating on the front of his t shirt, no where else, and just 2 nights so far..he NEVER had any symptoms of Lymphoma initally, except the lump on his neck which prompted all the testing...etc....
I was thinking replapse? but how can you replapse during chemo? AND, could this just be that he has been warm last couple nights, because its still winter where we are, and heavy blankets are the norm..
we will tell Oncol on Monday, but just thought I would post in case anyone had some insight..
thank you
Tammy
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No
Tammy,
To restate: We are not doctors. But given your husband's particulars, I would say that there is about a 0% chance that his sweating was from revitalized lymphoma.
One thing that is strongly indicative of long-term success of a patient's treatment is how fast a patient's chemo gets them to Complete Remission (CR or NED). Some get there fast, some get there slowly, and some never get there (cases known as P.R., or "partial remission"). The worst and most aggressive cases never even see ANY tumor reductions (clinical failure). Your husband had the best-possible results: rapid elimination of the tumors, CR. To go from that to renewed vigor of the disease is, as I suggested, very close to impossible.
The obvious things to watch are fever, allergic reactions, and blood counts. Virtually all patients on chemo have a nurse or NP on call 24/7. If it would help, give his 24 Hour number a ring and discuss this with them. It will; be a free call, part of his care. As all carregivers are taugh, allways call the doctor for any fever of 100.5 or above. Always.
But it would astonish me if HL itself were making him sweat while on first line treatment that has been working great thus far.
max
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Thank You, MaxNo
Tammy,
To restate: We are not doctors. But given your husband's particulars, I would say that there is about a 0% chance that his sweating was from revitalized lymphoma.
One thing that is strongly indicative of long-term success of a patient's treatment is how fast a patient's chemo gets them to Complete Remission (CR or NED). Some get there fast, some get there slowly, and some never get there (cases known as P.R., or "partial remission"). The worst and most aggressive cases never even see ANY tumor reductions (clinical failure). Your husband had the best-possible results: rapid elimination of the tumors, CR. To go from that to renewed vigor of the disease is, as I suggested, very close to impossible.
The obvious things to watch are fever, allergic reactions, and blood counts. Virtually all patients on chemo have a nurse or NP on call 24/7. If it would help, give his 24 Hour number a ring and discuss this with them. It will; be a free call, part of his care. As all carregivers are taugh, allways call the doctor for any fever of 100.5 or above. Always.
But it would astonish me if HL itself were making him sweat while on first line treatment that has been working great thus far.
max
Thank You, Max
Just a little nervous here and there! We have chemo on Monday, so we will mention to his nurse, and oncol then. He has no fever, and no NEW symptoms.
However last week, he had a blood transfusion due to severe anemia, because his hemoglobin was 8, and they didn't want it to get any lower..
and had no reactions to that, just that it improved his shortness of breath.
best regards
Tammy
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"Memories of Me"tambrak said:Thank You, Max
Thank You, Max
Just a little nervous here and there! We have chemo on Monday, so we will mention to his nurse, and oncol then. He has no fever, and no NEW symptoms.
However last week, he had a blood transfusion due to severe anemia, because his hemoglobin was 8, and they didn't want it to get any lower..
and had no reactions to that, just that it improved his shortness of breath.
best regards
Tammy
I had terrible breathing problems throughout chemo, but my doctor refused to discontinue the Bleomycin for me.
About two years after I ended treatment, my annual bloodwork detected that I had become seriously anemic. I had to go on IV iron for about two weeks (4 infusions). My onc started testing me for everything, but the cause was never found, and the anemia has not returned again now, about 4 years later.
Odd stuff happens while on these drugs. I say again that most likely he will end up ok. That and $1.00 will get you a cup of coffee at Waffle House !
max
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Our husbands should talk!tambrak said:hi Mrsf.
hi Mrsf.
You are not bothering at all!
So sorry that this is what you are going thru also, although we find the strength somehow to push through don't we?
My husbands mid treatment scan was negative, and the chemo is working! Dr. used the word, 'remission' when he called us this past Friday, with the results. We still have 5 more treatments to complete, to finish the total of 12, for his HL.
And I do not want him to lose any more weight as you stated, but doing the best we can!
The eating issue still is a huge problem, and I feel like I am in a test kitchen for 'chemo recipes'! We try different things to eat/drink, and feel so bad for him, because he says things either have no taste, or taste different, or feel different..etc.. And its not that he is not hungry, because he has an appetite, and that is what makes it all the more frustrating..
Liquids, smoothies, milk shakes, boost, ensure..etc. and lots of soups, seems to be the foods of choice lately, and I sneek in a scoop of whey protein sometimes, to boost nutrition levels. He has eaten a couple burgers from Five Guys, etc.. and says those have good taste =-) because they are juicy, and lots of sauce, so is able to tolerate.
The fatigue and weakness is also an issue, but my husband gets up every day, and goes to his shop (he owns a car restoration shop) and stays as long as he can, either 3 hours, 1 hour, or sometimes 5! Just depends.
I will keep you posted, and please do the same. I check this board a few times a week, when I can.
best regards and thoughts
tammy
Hi Tammy,
I'm new to the discussion boards and have been reading up on other's whose spouses have various forms of lymphoma. My husband was just diagnosed a few weeks ago and it's been a whirlwind. He's stage 3 of classic nodular sclerosing HL and just started his first round of chemo on Monday 3/6. He's receiving ABVD. I'm so happy to hear that in the halfway mark your husband's scan was negative--wow! That's the kind of news we're hoping to hear 3 months from now. So far he has had mild side effects, naseua and constipation, weakness. But I believe he's doing better than most--he's been out of bed for the most part, has taken short walks and is eating every day (so far). I know all this can change.
The reason I said our husbands should talk is because mine is a HUGE hot rod/car guy, has been his entire life. His biggest upset about all of this is that he can't be out in the garage working on his 59' chevy pick up or out joyriding in his '70 el camino! You said your husband owns a car restoration shop, so I was wondering if he has anyone to chat with. We just moved to the west coast 2 years ago and none of our friends or family (with the exception of my in-laws) are out here with us. Maybe your husband would have some encouraging words or advice for mine, who is just starting out with this.
Thanks, and now that it's been a couple months, I wonder how much further along he is in his treatment and how he's doing?
-Shannon
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Last Cycle ** AVD"Memories of Me"
I had terrible breathing problems throughout chemo, but my doctor refused to discontinue the Bleomycin for me.
About two years after I ended treatment, my annual bloodwork detected that I had become seriously anemic. I had to go on IV iron for about two weeks (4 infusions). My onc started testing me for everything, but the cause was never found, and the anemia has not returned again now, about 4 years later.
Odd stuff happens while on these drugs. I say again that most likely he will end up ok. That and $1.00 will get you a cup of coffee at Waffle House !
max
Cycle 6 (2 more chemo's) comin up on Monday!
My husband is hangin in there, to say the least. The last treatment (#10) seemed to knock him on his butt, just has the earlier treatments did.
His last couple treatments seemed hard, but symptoms were different and not as severe. As with all the treatments, the hardest time is about 4-5 days after the chemo.
However #10, the Dry mouth was worse, appetite, and fatique. His leg/muscles are weak, and he is using a stationary bike to try to help with that.
He had a little depression/melt down moment a few days ago, and just teared up wishing this was over, and wondering how he is going to get through two more treatments. Heartbreaking for me...
He has lost about 31lbs since the start, and has said that he cannot wait to put weight back on, and just get his taste back!
the simple pleasures...=-)
His platelet level was a little low, (94,000) for #10, but that did not delay his treatment. Hopeful he can get the last two without any delays...
I understand there is not much you can do about the Platelets being low, except to watch for bleeding, etc..which so far is ok.
Thank you again for insight and support
As his wife and caregiver, I have had my own stuggles but continue to plug away.
Have a good day
Tammy K.
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