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New thread for DaddysGirl/fathers SCT discussion

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

I started this new discussion for DaddysGirl. The old thread was getting too hard to pull up. Here is her last post concerning her father. Love...Sue (FNHL-2-3a-6/10)

July 3, 2012 - 1:25pm
DaddysGirl...
going to keep it short I

going to keep it short I appreciate all the messages above VERY VERY much and all the thoughts and prayers along with it... I read the messages to my Dad and family and it gives us comfort knowing you are all there with us... Dad had a very tough time today stem cell infusion.. he had 8 syringes, first 5 was no problem, 6th started to get chest discomfort, throat discomfort heaviness... cramping diarhea with 6th they had to give him in the bathroom, blood pressure went way up over 200s shaking so bad they couldn't measure blood pressure even manually... they administered some medicine through iv to stop shaking along with other medications, then started throwing up, coughing... it was terrible I couldn't watch him the whole time had to leave the room didn't want to have my anxiety effect others... mom left at one point too and couldn't go back in... it was so scary... they held on the 8th shringe for about 5 1/2 hrs later... it was the dsmo chemical the stem cells were stored with... he had too many bags so too much of dsmo... he did well with the last syringe... no reaction... what's important is for others anyone going through it is to tell the SMALLEST bid of reaction they feel so they can give breaks in between bags... I'm glad it's over... he has no apetite at the moment... again thank you very much for all the notes and everything... not sure of how to start a new thread can't think at the moment... unless someone else wants to start it for me...

DadysGirl
Posts: 314
Joined: Aug 2011

Glad to hear from you Mike... Dad actually lost 17 lbs in 21 days while in hospital... Not fluid weight...
Did you loose weight while in hospital?

coachmike
Posts: 139
Joined: Oct 2011

16lbs and was very happy bout it lol

coachmike
Posts: 139
Joined: Oct 2011

How is your dad doing

DadysGirl
Posts: 314
Joined: Aug 2011

He is ok Mike, I keep thinking of you but feel so tired lately... When I write to you I want to share more info with you but can't seem to do it... Sometimes talking seems to be an easier task than writing... His platelets were down to 20 and then went up 37 then 43. WBC was like 6.8 at discharge but went down to 5.6 then after shot went up to 19 something... Hct is ok around 33 if I recall correctly... We saw the doctor last Wednesday and dad had a difficult time to walk even to the wheelchair 3 steps he said he felt tired very tired though then later it went away... Last three days he has been eating better... But still picky and don't know what he wants usually. I just hope and pray you and my Dad both will have clean results... I hope dancoman I think that's his userid here he had it come back at the 102 day check.. I hope he goes into remission again... I know I haven't written but believe me you are in our thoughts and prayers and many times I wanted to write but as I said I want to share more info with you details and couldn't get myself to write... Dad says hi and he appreciates you asking of him, the whole family does too Mike. PLEASE be careful about not touching dirt for a yr, I 'm sure they told you about it... Also, Regarding yogurt they have mixed info as to whether it is safe to consume or not so Dad decided not to eat yogurt to be on the safe side... How are you doing? Are you going into work at all? Don't overdue it as it can probably setback recovery time... Last night Dad was doing some floor exercises leg raises etc :) he got a cute way of doing them... Are you a smoker? That was another biggie one of the nurses shared with us not to smoke or be around smokers for at least two yrs as one of the chemo you both were given can effect the lungs in acute or chronic form...
Hoe are your bloodwork levels and do you still get any transfusions? I don't know why I feel so tired.... Take care Mike and please let us know how you're doing?
Regards...

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi DadysGirl,
I wrote to you on another post (excellent news from Lisha)! I have also been thinking about your dad and how he wad doing? I'm keeping you and your dad in my prayers! Take care sweetie (((hugs)))

Sincerely,
Liz

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi DadysGirl,
I wrote to you on another post (excellent news from Lisha)! I have also been thinking about your dad and how he wad doing? I'm keeping you and your dad in my prayers! Take care sweetie (((hugs)))

Sincerely,
Liz

DadysGirl
Posts: 314
Joined: Aug 2011

Sweetie I'll be writing to you soooon.
Lots of prayers and luv...

DadysGirl
Posts: 314
Joined: Aug 2011

He is ok Mike, I keep thinking of you but feel so tired lately... When I write to you I want to share more info with you but can't seem to do it... Sometimes talking seems to be an easier task than writing... His platelets were down to 20 and then went up 37 then 43. WBC was like 6.8 at discharge but went down to 5.6 then after shot went up to 19 something... Hct is ok around 33 if I recall correctly... We saw the doctor last Wednesday and dad had a difficult time to walk even to the wheelchair 3 steps he said he felt tired very tired though then later it went away... Last three days he has been eating better... But still picky and don't know what he wants usually. I just hope and pray you and my Dad both will have clean results... I hope dancoman I think that's his userid here he had it come back at the 102 day check.. I hope he goes into remission again... I know I haven't written but believe me you are in our thoughts and prayers and many times I wanted to write but as I said I want to share more info with you details and couldn't get myself to write... Dad says hi and he appreciates you asking of him, the whole family does too Mike. PLEASE be careful about not touching dirt for a yr, I 'm sure they told you about it... Also, Regarding yogurt they have mixed info as to whether it is safe to consume or not so Dad decided not to eat yogurt to be on the safe side... How are you doing? Are you going into work at all? Don't overdue it as it can probably setback recovery time... Last night Dad was doing some floor exercises leg raises etc :) he got a cute way of doing them... Are you a smoker? That was another biggie one of the nurses shared with us not to smoke or be around smokers for at least two yrs as one of the chemo you both were given can effect the lungs in acute or chronic form...
Hoe are your bloodwork levels and do you still get any transfusions? I don't know why I feel so tired.... Take care Mike and please let us know how you're doing?
Regards...

DadysGirl
Posts: 314
Joined: Aug 2011

I'm feeling pretty down now, Dad has been having lowe abdominal discomfort or what he doesn't share much... yesterday he said he probably sat too long leaning forward playing game online so his groin area bones hurt... today mom noticed him lowering his pjs under his stomach and asked if similar to before... he was feeling discomfort tenderness before after 8 rchops and when he had petscan the lymph nodes had grown... :(
mom asked if he wanted larger pjs he said no...
now he is just laying down and says stretching his lower abdominal groin area that way since he thinks it happened from sitting too long for past few days... and i sometime notice he is pulling his legs upward toward his stomach like babies do for some reason maybe finds comfort that way andthen a little later they are straight out again...
i noticed him pushing his pjs down below his stomach just a little ago and asked him if his abdominal area hurts too if he has pain, he said no, i then said you lowered your pj that's why i asked and he got upset saying did i say i have pain... i wish he would tell us all of his symptoms little and big in detail so we don't have to question him ... but he won't complain unless it is like 10/10 :(((((((((((((((((((((((((
i'm feeling very sad, i hope it is not the cancer :((((

DadysGirl
Posts: 314
Joined: Aug 2011

I'm feeling pretty down now, Dad has been having lowe abdominal discomfort or what he doesn't share much... yesterday he said he probably sat too long leaning forward playing game online so his groin area bones hurt... today mom noticed him lowering his pjs under his stomach and asked if similar to before... he was feeling discomfort tenderness before after 8 rchops and when he had petscan the lymph nodes had grown... :(
mom asked if he wanted larger pjs he said no...
now he is just laying down and says stretching his lower abdominal groin area that way since he thinks it happened from sitting too long for past few days... and i sometime notice he is pulling his legs upward toward his stomach like babies do for some reason maybe finds comfort that way andthen a little later they are straight out again...
i noticed him pushing his pjs down below his stomach just a little ago and asked him if his abdominal area hurts too if he has pain, he said no, i then said you lowered your pj that's why i asked and he got upset saying did i say i have pain... i wish he would tell us all of his symptoms little and big in detail so we don't have to question him ... but he won't complain unless it is like 10/10 :(((((((((((((((((((((((((
i'm feeling very sad, i hope it is not the cancer :((((

DadysGirl
Posts: 314
Joined: Aug 2011

I'm feeling pretty down now, Dad has been having lowe abdominal discomfort or what he doesn't share much... yesterday he said he probably sat too long leaning forward playing game online so his groin area bones hurt... today mom noticed him lowering his pjs under his stomach and asked if similar to before... he was feeling discomfort tenderness before after 8 rchops and when he had petscan the lymph nodes had grown... :(
mom asked if he wanted larger pjs he said no...
now he is just laying down and says stretching his lower abdominal groin area that way since he thinks it happened from sitting too long for past few days... and i sometime notice he is pulling his legs upward toward his stomach like babies do for some reason maybe finds comfort that way andthen a little later they are straight out again...
i noticed him pushing his pjs down below his stomach just a little ago and asked him if his abdominal area hurts too if he has pain, he said no, i then said you lowered your pj that's why i asked and he got upset saying did i say i have pain... i wish he would tell us all of his symptoms little and big in detail so we don't have to question him ... but he won't complain unless it is like 10/10 :(((((((((((((((((((((((((
i'm feeling very sad, i hope it is not the cancer :((((

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi,
He is probably not sharing how much he hurts to keep everyone from worrying. Men have a tendency to do that. His shortness with you is most likely coming from the pain. It's so hard to sit back and watch someone we love hurting, and then feel so helpless. Hang in there and try to get some rest for yourself. I'm sure this is wearing on you too...my heart and prayers are with you. Much love...Sue (FNHL-2-3A-6/10)

DadysGirl
Posts: 314
Joined: Aug 2011

he seemed warm checked he has 99.8 and then 99.8 100.2
going to er.

DadysGirl
Posts: 314
Joined: Aug 2011

he seemed warm checked he has 99.8 and then 99.8 100.2
going to er.

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

So Sorry DadysGirl that your dad hasn't been feeling better! I'm constantly thinking of your dad and you, hopefully its nothing serious. Please let us know what they find out! I will be praying for him and you sweetie. Take care and sending you a huge, warm hug!

Sincerely,
Liz

coachmike
Posts: 139
Joined: Oct 2011

I pray for your dad daily and will definitely say a very special prayer tonight for him.

DadysGirl
Posts: 314
Joined: Aug 2011

Mike thank you so much ... Dont know how to say thank you. Will tell Dad when he gets back... Told mom already and we appreciate it very much... I hope you are well???

DadysGirl
Posts: 314
Joined: Aug 2011

You guys are all so sweet made me cry at er room they'll admit him bcuz of temp... They did EKG cardiac enzymes nothing acute resident doc said they did culture they just took him for chest X-ray to check for pneumonia he said during deep breath he gets pain in chest he had it at discharge and feels like its getting worse... Resident doc said his lungs sounded clear.. His groin area they checked for hernia didn't feel it on one side it hurts when they press otherwise it hurts while walking both sides as well as when getting sitting down or stretching hoping its just muscular... Thank you so much Liz... You're so kind and great

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi Daddy's Girl,

Just wanted you to know I'm thinking about you guys and your father.
I also hope it's nothing serious. Please keep us updated.

Hugs,

Jim

DadysGirl
Posts: 314
Joined: Aug 2011

Thank you so much Jim, unfortunately he has pneumonia :(
We are admitted to the stem cell unit.. Medicine not oncology doc checked him out and when she pressed two locations in abdominal area it hurt and that worries me of cancer stuff since he had abdominal,lymph nodes left going into sct... I asked doc whymitnhurt she just told me of one of the locations not having anything there it's empty space... When I mentioned of lymph nodes in abd. area she said the onc doctor will check him tomorrow too.
Please keep us in your prayers... Regards

DadysGirl
Posts: 314
Joined: Aug 2011

Thank you so much Jim, unfortunately he has pneumonia :(
We are admitted to the stem cell unit.. Medicine not oncology doc checked him out and when she pressed two locations in abdominal area it hurt and that worries me of cancer stuff since he had abdominal,lymph nodes left going into sct... I asked doc whymitnhurt she just told me of one of the locations not having anything there it's empty space... When I mentioned of lymph nodes in abd. area she said the onc doctor will check him tomorrow too.
Please keep us in your prayers... Regards

DadysGirl
Posts: 314
Joined: Aug 2011

They ordered ctscan to get clear pic very worried theyre not sure if pneumonia
I'm scared I'm worried did they see something else

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

You and your dad are in my thoughts and prayers today. Let us know what the scan results show. I'm worried about you and your health during all of this. Are you taking something to help you cope? If not, it might help. Much love...Sue
(FNHL-2-3A-6/10)

DadysGirl
Posts: 314
Joined: Aug 2011

I got copy of X-ray it said about both lungs bottom having patches more on left than right which may represent fluid, lung collapse partial or pneumonia
I'm not taking anything to cope...
Luv

DadysGirl
Posts: 314
Joined: Aug 2011

Ctscan showed many lung nodules he already had a few These are larger, there is hazing and something else... Could be chemo related, bacterial infection like pneumonia, opportunistic infections, cancer... :((( they were thinking of doing bronchoscopy to put some saline and suck fluid to check for other possible organisms fungal too,
They decide not to, for now to treat it like pneumonia and if he doesn't feel better get better than look for other things... If gets better then they'll assume pneumonia... I don't know what to think anymore I'm worried lot before he had 2mm 3mm 4mm nodules. Now much more both lungs before both too and largest 1cm and I have to get report like 6mm 7mm 8mm ones... I'm scared it's cancer. I asked nurse practioner at unit I cancer you can't treat him too now right she said if it is he is in trouble.

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

I hope things improve, Daddysgirl and that this is
all some sort of treatable infection as a result of his treatments.

Hang in there.

Hugs,

Jim

coachmike
Posts: 139
Joined: Oct 2011

I am sending up some serious prayers for your dad. Please remember to try and surround him with positive thoughts and prayers, I truly beleive that there is power in prayer. Please keep us posted

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Really sorry DadysGirl to hear that your dad is not doing well. I got pneumonia in Jan and I seriously felt like c**p! I lost about 15 pounds in one week and had a lot of fevers, ended up at the ER and stayed in the hospital for 2 days.
Have you gotten any results yet? Just wondering how he is doing today? please let us know...I always read your post but sometimes I can't post at the time I read them. Praying for your dad and you and many others here in the group! Take care (((HUGS)))

Sincerely,
Liz

DadysGirl
Posts: 314
Joined: Aug 2011

I'm sorry about your pneumonia... Dad had fever of only 100.2 and no coughs ....just weakkkk Jim, Mike, Liz and everyone, thank you very much for your prayers and kind words. Dad has more energy, no fever still weak, apetite a little better changes though, so far sputum didn't show anything, fungal stuff so far nothing showed, onc team wants a repeat of ctscan tomorrow, he had one on Monday, infectious team and lung doc don't feel much change will show as it'll take sometime for things to clear, but onc wants to see whether it is better or things are getting worse... Talked to his own onc he stopped by between his patients today... Questioned him about the enlarged lymph noes and nodules... He said lymphoma of lungs rare... He didn't think so right now he thinks probably due to infections....I hope pray it is not cancer ...
His ck level was way high but direct cardiac enzymes were ok.. The infectious team suggested to change his liver medication... His onc said he thinks he may have been feeling so awful bcuz of it being so high... He said this could be viral too what he has... These things confuse me even more... If not infection then what are all those nodules..will write more so far this I it. How is everyone? Take care all and pls don't forget us ....

DadysGirl
Posts: 314
Joined: Aug 2011

Waiting for ctscan with dye this time...

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Dadysgirl,
Be sure to post the results of your dad's scan. I've been keeping you both in my prayers and read all of your up-dates, which is very sweet of you to do. I hope you are getting a little rest and taking care of yourself...this has been a rough road for you as well as dad. I'll be checking in while gone on vacation...maybe not as often, but I'll be around.
Take care...Sue (FNHL-2-3A-6/10)

DadysGirl
Posts: 314
Joined: Aug 2011

New ct showed worsening of both lymph nodes and nodules...
By how much dont know no measurements given...
If it is in fact lymphoma they said there's nothing they can do...
No fever, WBC going down...
Infection if so it doesn't make sense either....
Just scared out of our minds

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Oh MY God DadysGirl!!!
I'm just without words right now DadysGirl, Don't know what else to say but that I'm really really sorry that this is happening again. Damn this cancer to hell!!! I wish I could be there by your side helping you through this very difficult time but just know that I'm thinking about your daddy and you and I'm really praying hard that the Drs can do something else for him! Please as soon as you know something let us know I will be checking several times today for your posts. HHHUUUUGGGSSS dear friend!

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi DadysGirl,
I'm so sorry the scan results didn't show better news! I pray the doctors will find something to turn things around. My heart and prayers are with you. Don't give up hope, as hard as that may be right now for you...God has a way of bringing light in when we feel none is possible. Please keep us informed....prayers coming your way. Love...Sue
(FNHL-2-3a-6/10)

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi DadysGirl,

I'm so sorry about this. Know you guys are in our thoughts.
Like Sue said, don't give up hope - it does have a way of
springing out of nowhere and you know there's plenty of hope
here and positive thoughts and prayers coming your way from
the folks here.

Hugs,

Jim

coachmike
Posts: 139
Joined: Oct 2011

DaddysGirl

I am absolutely shocked. I am so sorry for you and your family. Please try and keep the faith especially in a time like this. Dont give up yet, stay strong and know that God is with you and your dad right now. He is a mighty and powerful loving God. I will pray for you and your dad continuosly

DadysGirl
Posts: 314
Joined: Aug 2011

I hope it is somehow some infection and not cancer

DadysGirl
Posts: 314
Joined: Aug 2011

Imaskedmhow,much larger the np net to radiology they said lymph node doubled,in size. I asked If one or all she said they didn't say...

DadysGirl
Posts: 314
Joined: Aug 2011

Imaskedmhow,much larger the np net to radiology they said lymph node doubled,in size. I asked If one or all she said they didn't say...

DadysGirl
Posts: 314
Joined: Aug 2011

I asked how much they got enlarged..she didn't know.. Report didn't say th np went to radiologist and they said lymph node doubled in size...I asked all,she said she doesn't know they didn't say...I asked about nodules she said they did t say anything specific to them just worsening...

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

DadysGirl,
Just know that I'm here that for you, praying that something changes for the better. Like everybody else already said, don't lose faith I know it's really hard right now to not lose it but you just have to believe. Praying for your family, your daddy, and you! Sending you lots of hugs and love your way!

Sincerely,
Liz

DadysGirl
Posts: 314
Joined: Aug 2011

It just hurts so much. I want him to be ok so badly. Please God make my Dad well again please

miss maggie
Posts: 929
Joined: Mar 2010

Hello,

I too am so sorry for the difficulties your dad is having.

Hopefully, he can drink Ensure to pick up his strenth. Your dad sounds like a
real trooper. You are such a wonderful daughter for all you do.

You and your family are always in my prayers. hugs and love Maggie

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