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Husband with hodgkins

tambrak
Posts: 29
Joined: Jan 2017

Hello,

I am new to this discussion. My Husband was diagnosed with Hodgkins Lymphoma In October of 2016. Dr gave a good prognosis, and Lymphoma is curable, but that is down the road. Getting through the treatment is quite an experience.

He is approaching his 6th chemo treatment coming up on Jan 9,  2017. Regimen is set for 12 treatments..

I am at a crossroads, as I am trying to help him battle the chemo side effects, although feeling so helpless and scared at the same time, but trying to keep up a strong front.

He is fatiqued, and does not want to eat much, due to the taste bud issues that go along with Chemo. He does well with soups, shakes, smoothies. boost, ensure.etc.

I offer different things for him to eat/drink, however I want him to eat more, because we do not want to lose any more weight!

He has lost abound 20lbs since the beginning, and has 6 more treatments....

 

Bottom line is I feel so very bad for him, and he is a very postive person normally, so he  gets up every day and goes to work, even it is a half day,

then comes home and is just exhausted..

I don't want to be a nagging wife, and irritate him with questions about how he is feeling, or if I can get him a drink or food.

 

thank you for listening.

tammy k.

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Tammy, you are obviously a blessing to your husband.  Your worry is unavoidable.

It sounds like he is on ABVD, which is what I took (the 12 infusions and the fact that he has HL is what makes me think this).  Anorexia, or adversion to eating is common after numerous infusions have been applied. I stopped eating anyting and had to live on Ensure, or other breakfast drinks for the last few months.

Get whatever nutrition in him you can; any calories are better than none.  He might develope food fetishes, or cravings for odd foods, almost like a pregnant woman will experience. Feed him what he likes at those times. The anorexia is due to the drugs, not the disease. When he ends chemo, his appetite will return over time. Mention his weight to his doctor, but what you are experiencing is common on ABVD (when given over long-term), and should not damage his health after he recovers.

max

tambrak
Posts: 29
Joined: Jan 2017

Thank you so much for your response Max. I hope your are doing well after your treatment.

Yes he is on ABVD, however the Bleo  (B) was dropped from his meds last session, as the doc felt it was not necessary for him, since his latest lung testing was good.

Hodgkinninja
Posts: 14
Joined: Jan 2017

Just have him eat whatever he will eat when he is craving....I had weird   food fetishes and I we I got those craving I went town.   Depending on what state you are in you might have success with cannabis to increase appetite.

tambrak
Posts: 29
Joined: Jan 2017

thank you for responding..

Just a worry, but we will get thru this, as we are not gonna let this kick our butts!

 

just heartbroken for my husband, is is such strong, positive and giving person, to be dwindling away with chemo symptoms

and feeling crummy...=-(

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Your husband will rebound: Let that be your primary viewpoint.  HL is usually beatable, and ABVD is very effective, but harsh while taking.  I developed pulmanory problems while on it, but my hematologist said it was not from the Bleomycin, and had me finish it full-strength, but it is a potential danger to the lungs.

You asked above:  I am lymphoma-free today, six years later.  In six years, he will be lymphoma-free also.  I looked horrible at the end of treatment, but rebound will begin to occur rapidly.  Side-effects may linger up to a year: Weakness, mental confusion, and the others.

max

tambrak
Posts: 29
Joined: Jan 2017

thank you Max, you have been most encourging..Laughing

 

 

 

tambrak
Posts: 29
Joined: Jan 2017

After 6 abvd treatments, my husbands Pet is scheduled for next week.

Fingers and toes crossed for positive news.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

tammy,

I had trouble keeping my toes crossed -- as a southerner, decided to use duct tape on them !

Kidding, but wishing you both well, and a clean PET: NED, CR, all the "good" alphabet arrangements

max

tambrak
Posts: 29
Joined: Jan 2017

haha thank you Max.

here in Ohio we also use alot of duct tape..lol

 

My husbands' PET scan after 6 tx's was negative. Dr used the words 'remission' and that is exacty what they had hoped for and strived for.

however, he has to continue with chemo, to finish scheudled 12 tx's..5 more to go!

 

thank you so much

Tammy

 

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

Thank you for posting this

MrsF
Posts: 6
Joined: Jan 2017

Hi Tammy,

Boy can I relate to what you are going thru! My husband was diagnosed with NHL in November. His first treatment was the week after Christmas and all seemed to have gone well, at least he didn't have any of the possible side effects during treatment (he is on RCHOP). Last week we went in for his 2nd treatment, he is supposed to have 6- 3 weeks apart, and he had a temp of 100.3 so they did not want to treat. We are rescheduled for tomorrow but he has been getting temps every day for the last week so not sure what will happen tomorrow. I've called twice to talk to the nurses. they say if the Doc determines it is "tumor Fever" he may just put him thru treatment anyhow. If it's from the treatment we will have to make some adjustments (there are no other symptoms to indicate infection so they feel its just Tumor Fever).

Of course my husband is discouraged by this set back. His appetite is also off because nothing tastes good. I keep buying different things that I think might interest him but hard to find things he likes. He has lost quite a bit of weight; fortunately he had some to lose but at this point we don't want him losing much more. Its a daily struggle trying to make sure he's fed, comfortable, how high is his temp? is anything else going on I should know about...I too feel like I'm badgering sometimes.

Tammy, it is good to know someone else is going thru the same thing. I feel like I am grosely under-trained for this job I find myself in right now. We never even had kids so I don't even have the mother instinct going for me!

I wish you both well and much success with treatments and recovery <3

 

 

lindary's picture
lindary
Posts: 642
Joined: Mar 2015

MrdF,

When going through chemo forget what food should tastes likes. If her husband loves the taste of certain foods I am not surprised that he has toruble wanting to eat. 

Over 30 years ago a guy I knew was going through cancer treatment (don't remember what kidn of cancer) and he decided that his goal every day was to eat. He felt that if he start losing wieght he was going to die. He survived and also gained weight during treatment. Since then I've known many who have had various types of cancer, each with their own situtation.

When I was diagnosed I knew I needed to make sure I ate. I also knew I was enough overweight that if I lost even 50 pounds I would still have room to lose more.  So I told myself that as long as I didn't lose more than 5 lbs in a week, I was ok. I made a list in my mind of things I would try to have every day, regardless of taste. (I modified that later to skip food if the taste was bad instead of flat.) 

I won't go into what ended up on that list but I will say that I had a surprise. I love spicy foods and the surpised was that most of the time those tastes came through. My husband was adamant about me eating healthy stuff so our compromise was his vegetable soup. I am not a big vegetable eater so I had the soup knowing it was healthy. He agreed to let me skip 1 meal a day, if I was not feeling hungry. And my go-to-food, what I would eat when I didn't want to eat at all, was mac 'n cheese. I've heard of others where french fries were their go-to food and someone else mashed potatoes. It seems the common denominator is starch.

I will admit that I wasn't dealing with a fever and probably some other things your husband is dealing with. Just keep trying. I iwll add at this point that V-8 and nutritional drinks also helped me. Good luck to you & your husband. 

 

MrsF
Posts: 6
Joined: Jan 2017

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!

 

 

abcma
Posts: 24
Joined: Aug 2006

It is difficult to find foods that are palatable.  The only thing Jon would eat was blueberry pie.  

tambrak
Posts: 29
Joined: Jan 2017

hi Mrsf.

You are not bothering at all! Cool

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

MrsF
Posts: 6
Joined: Jan 2017

I'm so happy for you and your husband for the negative scan Smile 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.

Sal0101's picture
Sal0101
Posts: 124
Joined: Sep 2015

I've gone through 3 chemo's, and several fevers. The 3rd chemo was BEAM before my stem cell transplant.  That one was the one that caused me to lose my appetite! I didn't think it would ever happen!  I loved all food! I even loved ice water! Spicy, sweet, sour, crunchy, warm bread with butter, everything!  But it happened!  I was full after 2 bites of anything,  nothing appealed to me and water tasted like metal! What was it that I ordered in the hospital and eventually had for every meal just so I ate?  Kelloggs Sugar Frosted Flakes and milk!  I ate and that's all they cared about! 

No worries!  4 months after the SCT, I am back to loving all foods! 

lesson learned...eat what you want regardless of what time of the day it is! 

Sharon

tambrak
Posts: 29
Joined: Jan 2017

all the best to you and your husband, also.

 prayers and thoughts for recovery..for everyone on this journey.

 

 

Shayfey
Posts: 10
Joined: Mar 2017

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

tambrak
Posts: 29
Joined: Jan 2017

yes, my husband would love to talk to your husband anytime..

 

my email is Tk@qkd.com, if you/he wish to send along a note, and I will forward on to my husband.

 

Tammy K.

we are in OHIO...

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Welcome to you, Mrs F

Your husband's fever is very possibly neutropenia, a routine side-effect of many chemo drugs; it causes certain forms of white blood cells to drop below normal range, and induces fever. I was hospitalized for a weekend with neutropenia after my first infusion.   Neutropenia is ordinarily controlled with a shot of a drug called neulasta or similiar drugs, within 48 hours after an infusion ends.  I would ask the oncologist about both neutropenia and whether or not he is getting neulasta (most R-CHOP patients do receive it).  Many oncologist's refer to 'neutropenia' with the layman's term 'tumor fever.'

Rituxan (the 'R' drug in R-CHOP) also routinely causes fever and chills, but the chills are usually of short duration.

Loss of taste and eventual aneroxia are common, but apppetiete and normal taste return with in a month or so after chemo ends for almost all patients. Get him to eat and drink what he will, but I went on Ensure for about two months during my six months on R-ABVD, which is a combination used against HL.

I would ask the oncologist about neutropenia, and if he is getting neulasta.

I have always said: My cancers were harder for my wife than they were for me.  Although I was in pain and miserable, she had to do so much more than I did during that difficult period.  But his treatment period will end faster than you can imagine.

max

neutropenia: https://en.wikipedia.org/wiki/Neutropenia

Rituxan: http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

MrsF
Posts: 6
Joined: Jan 2017

Max, thank you for the information!

I have seen the commercials for Neulasta, never realized what it was actually treating. I have also heard of neutropenia and never realized that is what "tumor fever" is. I am armed with some knowlege and questions for our appointment tomorrow thanks to you! Hopefully it won't be postponed due to the weather.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Mrs,

The link above to Rituxan is from chemocare.com  - a great source for every FDA-Approved chemo drug in the US.  Anytime you have a question about anything Mr.F receives, you can get a good overview there.  It also has articles relating to side-effects and conditions, such as his taste issues, and all other routine problems.

For more technical stuff, the journal Blood is probably the best professional publication for blood-cancers in America.

http://www.bloodjournal.org/?sso-checked=true

max

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

Pathophysiology

This gets a little technical but neutopenia just means an abnormal total number of neutrophils.

For adults that number is around 1500.

Tumor fever is noninfectious fever caused by/triggered by the tumor, acts differently and responds differently than say infection related fever

The pathophysiology of neoplastic fever is not completely understood, however, cytokines are known to be the key players. These endogenous pyrogens induce prostaglandin E2, which in turn causes hypothalamic set point surge, and fever. IL-1, TNF, IL-2, IL-6, IL-12, or interferon may be elevated with neoplasm or infection [8]. While the cause of elevated cytokines during infection is precipitated by pathogens, the trigger in cancer is unclear. One study found that activation of Il-1? was induced by mutated RAS [9]. Another possibility includes inflammation secondary to ulceration or necrosis caused by the tumor itself. A key player in this cytokine jumble is IL-6. High levels of IL-6 are seen in Hodgkin’s Lymphoma, Diffuse Large Cell Lymphoma, and CLL. IL-6 is associated with B-symptoms and has prognostic value in these three cancer types, as well as renal cell carcinoma [10, 11, 12, 13, 14]. Notably, in Diffuse-Large Cell Lymphoma, the independent factor that most correlates with complete remission and disease free survival is IL-6 serum level [15].

tambrak
Posts: 29
Joined: Jan 2017

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.Cool

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. Cry 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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

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

tambrak
Posts: 29
Joined: Jan 2017

thank you max

opinion value is $1mill!

 

Tammy

Islandgirl50
Posts: 2
Joined: Feb 2017

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

tambrak
Posts: 29
Joined: Jan 2017

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

 

 

MrsF
Posts: 6
Joined: Jan 2017

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!

tambrak
Posts: 29
Joined: Jan 2017

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 =-)

MrsF
Posts: 6
Joined: Jan 2017

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!

tambrak
Posts: 29
Joined: Jan 2017

THANK YOU.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

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."

 

.

lindary's picture
lindary
Posts: 642
Joined: Mar 2015

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.

 

tambrak
Posts: 29
Joined: Jan 2017

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.

 

 

tambrak
Posts: 29
Joined: Jan 2017

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

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

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

tambrak
Posts: 29
Joined: Jan 2017

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

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

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

tambrak
Posts: 29
Joined: Jan 2017

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.

 

123Kra
Posts: 6
Joined: Mar 2017

my husband is on his first treatment... day 4. ive found he has no energy. He was badly awake for 6 hours today. And half of that time he fell back into a crazy state of fatigue. Its hard watching him feel this bad. its encouraging to hear after day 5 things look up. It's hard as a caretaker watching your loved one suffer like this. 

tambrak
Posts: 29
Joined: Jan 2017

it is hard 123Kra..I know exactly how you feel

just need to stay strong, and definetly have your alone time and moments to cry, or be sad, or whatever you need for yourself..

what treatment is your husband receiving?

 

thoughts to you

Tammy

tambrak
Posts: 29
Joined: Jan 2017

my Husband went in for his last chemo treatment today, and his Hemoglobin was 7.5, too low for full treatment, so needless to say, we need another 2 pints of blood! (transfusion is tomorrow am) and LAST treatment (#12) will be in one week, god willing!!

He had his 1st transfusion on Feb 22, when Hemo was 8, and had some shortness of breath..It helped alot....

He was totally deflated when the doc said we need to pospone a week. He was almost ready to throw in the towel, and just say forget the last treatment, but I talked him down, and he realized what needs to be done..so very sad, and heart wrenching...

what a morning!  hopefully this is not a sign of any further issues, but just the  side effects of the AVD...=-(

 

thanks again,

tammy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

tam,

As a sub sailor for years, that infusion is the Lighthouse on the shore: You see it and know you will be in port soon with that final infusion over.

Watch the breathing and low RBC issues.  I had to get infusion iron (IV drip) over the period of a week two years after full remission was achieved; the doc could not figure out why. But it cleared and has not returned. I do take a daily Iron tablet, OTC, per his recommendation.

max

tambrak
Posts: 29
Joined: Jan 2017

thanks Max

He had 2 pints of RBC yesterday, and almost immediately retained good color, and left the center feeling better.

hopefully this will last the week, and LAST infusion on Monday!!  god willing, and fingers and toes, and whatever I can find, will be crossed..lol

thanks

tam

Rocquie's picture
Rocquie
Posts: 829
Joined: Mar 2013

Hello Tammy, I hope your husband feels better today. I had to have many transfusions, any time my hemoglobin dropped below 8.0, which it did many times. I had so many transfusions that my doctor began to worry about Iron Overload. But I got to the place I actually looked forward to the transfusions. The first one freaked me out, but after that I realized how much better I felt afterwards. I could breathe better and the fatigue would improve. 

You have both been troopers. Hang in there--it's almost over!

Hugs,

Rocquie

 

tambrak
Posts: 29
Joined: Jan 2017

thank you so much rocquie..=-)

after transfusion yesterday of 2 pints of RBC, he feels better.. just have to get thru this last week, feeling strong and ready for #12 on Monday

regards,

Tam

lindary's picture
lindary
Posts: 642
Joined: Mar 2015

I've been on iron pills since I was a teen. So my dr kept an eye on it through my treatment. I was fine through the R-Chop. Three cycles of RICE knocked me for a loop. WBC, RBC, Hemoglobin and platelets went in the basement. Neulasta helped with the WBC. Platelets usually came up enough before the next treatment. After the second treatment RBC & hemoglobin was down enough I was given a transfusion. I was amazed how much better I felt when it was done. Counts came up but were borderline when I went in for the last RICE. So I first got a transfusion. I think it was on the second day of treatment I needed another one. My blood counts were monitored for a few weeks afterwards aand they did work their way up.  None of my counts have gotten to normal levels yet and it has been 1 1/2 years. They hover just below the low end but I just keep moving. 

tambrak
Posts: 29
Joined: Jan 2017

today at noon, my husband will have his last treatment ! He had to have a transfusion last week to boost hemoglobin, so hopeful it worked and we can get this last chemo in today!

Then we meet with doc in a couple weeks for a check up, and then a repeat PET (we are assuming ) to see if this thing is kicked!

will keep you all posted, thank you again for your support and stories

 

Tammy K.

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