Husband with hodgkins

123Kra

tambrak said:

Last Cycle ** AVD

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.

 

my husband is on his first

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

a set back ugh...on #12 of AVD

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

tambrak

123Kra said:

my husband is on his first

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. 

it is hard 123Kra..I know

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

Max Former Hodgkins Stage 3

tambrak said:

a set back ugh...on #12 of AVD

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

RBC

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

Rocquie

tambrak said:

a set back ugh...on #12 of AVD

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

Transfusions

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

Max Former Hodgkins Stage 3 said:

RBC

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

thanks Max

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

tambrak

Rocquie said:

Transfusions

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

 

thank you so much rocquie..=-

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

Transfusion

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

Last treatment #12 today!

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.

Max Former Hodgkins Stage 3

tambrak said:

Last treatment #12 today!

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.

Finish Line

Praying all will be clean on the PET Tammy. It sounds like most likely it will be.

Your husband is a reminder that sometimes even a common, first-line chemo set can be hell to get through.  So many say they never let chemo interfer with their marathon training or finishing their PhD at Oxford, or doing both at once.  I remember when I was in the middle of infusion, this woman began.  Always had the laptop fired up, blazing new trails, conquering empires.  Her cell phone never quit ringing, all important stuff I'm sure. 

I always thought: "Geeze, its ashamed she isn't important enough to be allowed to be sick for a while."   Some of us had no choice but being sick, and acting that way.  I remember in college, a professor from China was teaching us a course on Buddhism.  He remarked that one of the most amazing things he had observed in America was that people eat while working; breakfast with a newspaper, lunch with a phne hanging on their shoulder. He said he found it so sad that people could not even eat without "doing something," as if eating itself were not a part of life.  In Scotland in the 80s, I was in a bookstore in a little village one day, and the clerk said, "Excure me, we're closing."  It was noon on a Wednesday. I asked why they were closing, and he said "the town had always shut down at noon on Wednesdays. Why would they not ?" Take a break world !  The ultimate vacation has no itenerary, no reservations.

max

https://www.youtube.com/watch?v=EnPIOH8bCfk

 

lindary

working

Like most people when I was told I had cancer one of the first things I though of was my kids and grandkids. I wanted to beat this disease for them.

When I was getting R-Chop I left my electronics at home, except for the cell phone. That was more so I could call my husband when I was done. I spent the day watching tv and reading. The days between treatments I did work. A few days from home and then in the office. I guess I felt that if I didn't work I would start laying around sleeping and if I spent too much time sleeping the cancer was going to win. I didn't want that to happen. 

Then I went in for the RICE treatment. Three and a half days in the hospital. Each day it was breakfast, work, lunch work, supper, play on personal laptop, watch tv and read then go to bed for the night. Same motivation,kKeeping moving so the cancer does not win and I can see my grandkids grow up. 

Of course I am not a fool. If my body told me I was doing too much I did take a break and rest. Plus for work I did have a reduced load but my family was my focus in the long run. 

tambrak

finish line

thanks Max!

The doc came by during last treatment and high'fived both of us, and praised my husband for doing so well during his 6 cycles. =-)

We have an appt with doc next week for check up, and to set up the PET..it will be clean!!

regards,

Tammy

tambrak

Max Former Hodgkins Stage 3 said:

Finish Line

Praying all will be clean on the PET Tammy. It sounds like most likely it will be.

Your husband is a reminder that sometimes even a common, first-line chemo set can be hell to get through.  So many say they never let chemo interfer with their marathon training or finishing their PhD at Oxford, or doing both at once.  I remember when I was in the middle of infusion, this woman began.  Always had the laptop fired up, blazing new trails, conquering empires.  Her cell phone never quit ringing, all important stuff I'm sure. 

I always thought: "Geeze, its ashamed she isn't important enough to be allowed to be sick for a while."   Some of us had no choice but being sick, and acting that way.  I remember in college, a professor from China was teaching us a course on Buddhism.  He remarked that one of the most amazing things he had observed in America was that people eat while working; breakfast with a newspaper, lunch with a phne hanging on their shoulder. He said he found it so sad that people could not even eat without "doing something," as if eating itself were not a part of life.  In Scotland in the 80s, I was in a bookstore in a little village one day, and the clerk said, "Excure me, we're closing."  It was noon on a Wednesday. I asked why they were closing, and he said "the town had always shut down at noon on Wednesdays. Why would they not ?" Take a break world !  The ultimate vacation has no itenerary, no reservations.

max

https://www.youtube.com/watch?v=EnPIOH8bCfk

 

yes, thank you Max.

yes, thank you Max.

#12 is in the books!

Now a couple more weeks of hard symptoms, then see the doc next week for check up, and to schedule PET (we assume) and then hopefully another clean, complete remission, NED scan!! (postiive vibes!!)

regards

Tam

tambrak

All done with Chemo! post treatment care......

All good! after 6 cycles of AVD, 2 blood transfusions, and lives turned upside down

oh my, we are done!

Dr. set up a CAT scan for next week to get a pic of abdomen, just to confirm all good, and didn't feel a PET was necessary because the last PET after cycle 3 was clean (remission).

Also the meta-port will be taken out next week! My husband is glad about that for sure..=-)

Then he will see the doc every 3 months for next two years, for a ck up, and blood work...Reoccurance is only 10% at this point, but after 2 years, the percentage goes waaaaaaaaaaaay down.

 

Hair will eventually come back, but all he wants is to gain back about 20lbs, eat a good meal that doesn't require a straw, or a spoon, and just feel stronger!

thank you for listening. Onward and Upward..

 

Tammy K.

 

 

tambrak

Shayfey said:

Our husbands should talk!

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

hi shannon

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...

 

tambrak

One more test!

My husband was de-ported last week ( got his meta-port removed!  lol )

and CAT scan on Friday, fingers crossed that all is OK! and we still have a clean scan

(not sure why they do not do another PET)

Doc very optimistic, and said remove the port anytime, and I will see you in July for a check up!

So I guess he knows from experience that this thing is definetly in remission..=-)

His appetite and taste is already coming back, and energy is amazingly improved.

Will check in soon to update

thank you

Tammy K.

 

 

lindary

PET

PET scans are more expensive that CT scans plus there is the concern of how much radiation a person had already recieved. I had 1 or 2 PETs in 2015 and 2 in 2016, each time also had CT scans. The last set of PET/CT was Nov 2016. I am scheduled to have just a CT scan soon. I am guessing I won't have another PET scan unless there is the possibility that I have cancer again. On the other hand, I still have my port since I am on Rituxan maintainance. 

tambrak

all done!

husbands CT scan was clean, same as PET back in January, no change..

done and done.

He has already has gained back 10 lbs, and getting stronger every day.

God willing he will stay healthy as can be, and we will see doc every 3 months for 2 years, in hopes of NO reoccurance!! 

I will keep you posted

 

Tammy K.

Rocquie

tambrak said:

all done!

husbands CT scan was clean, same as PET back in January, no change..

done and done.

He has already has gained back 10 lbs, and getting stronger every day.

God willing he will stay healthy as can be, and we will see doc every 3 months for 2 years, in hopes of NO reoccurance!! 

I will keep you posted

 

Tammy K.

Tammy

Congratulations!! May you both remain healthy and happy for many years.

Hugs,

Rocquie

 

lindary

good news

Glad to hear the goo dnews Tammy.