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After Stem Cell Transplant

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

I just had my meeting with the Dr who will oversee the Stem Cell Transplant process. They gave me a binder with all sort of documents and information. There is a section with the Outpatient Guidlines. A lot of the pages come from the Bone Marrow Donor program. (They ae using my own t-cells so no donor.)

It really goes into great detail about cleaning the house and what chores to avoid (garbage, plants). I get all that but I can't see my family cleaning our house from end-to-end every week to keep the germs at bay. We have a dog so vaccuming is important plus I have gotten in the habit of wearing my shoes, not going barefoot, in the house. On the other hand, if there is a room that is seldom used, it might be better to keep the door close so as to not stir up and dust/dirt that is in there. I am going to insist that our kitchen towels be changed every day.

Then there is a section about work saying that the patient can go back to work a year after the transplant. I am able to work from home but I am not sure I will be allowed to do that for a whole year. 

My questions are:

What did your family do to get the house ready before you got home?

Once you were home what level of cleaning was maintained and how often was it done?

If you have a dog, how did you deal with them during your recovery?

Looking back, what would have done different?

If you were still working at the time of your Stem Cell Transplant, when did you really go back to work?

Any other points you can give?

 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi lindary,

I had an autologous stem cell transplant (ASCT) in 2012 at the age of 68. Before that I got a 5 day high dose chemo treatment according to the BEAM scheme which wiped out my bone marrow. The ASCT restored the bone marrow. The high dose chemo made me really weak and my stomach was in disorder for three months. After the ASCT I stayed in hospital for about three weeks. I got no advice about special cleaning of the house, I should only beware of infections. About one week after I got home I got an infection with high fever, and I was in hospital for about one week and got antibiotics intravenously. Then I went home again, and after 3-4 months I was reasonably fit, and after 6 months about as strong as before my disease. I took Temodar chemo pills for 2 years as a precaution against a relapse. Now I am NED (no evidence of disease) since late 2012, and feeling well.

Answers to your questions:

Q: What did your family do to get the house ready before you got home? A: Nothing special.

Q: Once you were home what level of cleaning was maintained and how often was it done? A: Just normal cleaning.

Q: If you have a dog, how did you deal with them during your recovery? A: I do not have a dog or any other domestic animal.

Q: Looking back, what would have done different? A: Nothing.

Q: If you were still working at the time of your Stem Cell Transplant, when did you really go back to work? A: I was retired then.

Q: Any other points you can give? A: Beware of infections.

Take care, and good luck!

Sten

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

Thank you for your response. They gave me so much info at the hospital and some of it conflicts because it comes from different sources. Looking online didn't help. I figure my best resource is people who have been through it. I remember you posting bits & pieces about your stem cell in other threads but I was hoping to get more detail, which you did give. I appreciate that. 

I am getting the same treatment you got except the chemo will be 6 days. I think I am going to tell me family to make sure they dust and vaccum the main rooms before I get home. Especially the bathroom off our bedroom. I am taking note of your comment about the stomach and getting the infection when you get home. My goal will be to get past that first week without getting sick. Each week after that without getting sick will be a plus but they have warned me that I probably will get sick sometime that first month.

I am glad to read that you felt fit around  3 - 4 months. That is a goal of mine too. My process starts next week. 

illead's picture
illead
Posts: 837
Joined: Aug 2012

I just want to wish you well next week and through the process.  I know it must be scary for you, but you have done your homework and sounds like you are trying to stay positive.  Please let us know how you are progressing when you are able.  Hang in there.

Many thoughts and prayers your way,

Becky

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

Lin,

You have been a real trooper, facing this head-on, making all the hard decisions, seeking outside imputs.

Obviously everyone here is pulling for you to get through this harsh trial with your usual success and grace.

max

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I echo all of what Becky has said.

You are a true warrior, leader and the Ruler of your cells and body. 

I will look forward to your posts and can't wait when this is all behind you.

All my best, prayers and positivity coming your way!

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

I am not going in for the Stem Cell Transplant this month. It will be re-scheduled to sometime after the first of the new year. 

I received a call from the doctor’s office late Wed that the transplant was cancelled and an appt with the doctor in charge was scheduled for today. One of the tests on the bone marrow came back after our visit on Monday and it showed that some abnormal cells which can convert to a more aggressive form of cancer. What that means is they cannot use my stem cells for the transplant and will have to use donor stem cells instead. Until then I will be on Rituxan maintenance which is every other month. The last time I got Rituxan was Oct so the next one will be in Dec.

In the mean time the Stem Cell Transplant team will be regrouping and looking into finding a donor for the stem cells. I have a brother so I will be contacting him but there is no gaurantee he will be a close enough match. As the doctor said, I get to enjoy the holidays and we will "regroup" after the first of the year.

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

Bless you Linda, it looks like you are back on your merry-go-round. I know you want to get all this behind you, but as your doctor said, at least you will get to enjoy the holidays. 

I think of you often. You have inspired me (and I'm sure others as well) with your continued positive outlook. 

Maybe we can share some Thanksgiving recipes. Smile

Hugs,

Rocquie

 

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

Our kids were planning on putting together the Thanksgiving dinner figuring it would be them plus their dad. Now that I am going to home they have decided they are still going to prepare the meal but all will be at our house. So one dtr is making the traditional stuffing. Ours is simple, I cook the turkey guts, then grind it up with celery, onion, and some garlic. I cook up pork sausage and cut up bread in cubes. We kind of do one load of bread for each pund of pork sausage. Then all of it is mixed together along with about a doen eggs (beatten) and with a fair amount of poultry seasoning.  I cook it in a slow cooker. We will see how it comes out. Not sure who is taking on the pumpkin pies. 

So Rocquie, what is your special food tradition? Anyone else can join in this too.

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

Lindary,

I have never had the sausage-based Thanksgiving dish, but it sounds tasty.  My brother has been doing deep-fried turkey for about ten years, and I am tired of it now (it was something of a novelty when the propane oil cookers became widely popular years ago).  He still lives in Charleston, where I am initiailly from, and "if it aint fried it aint food" in old, Lowcounty thinking.  This persists also in abundant seafood selections.  My aunt, now long-deceased, owned a Georgetown (SC) plantation for nearly 50 years, and the spreads there were unbelievable. Usually about 20 relatives at the huge dining room table.  Old plantation houses had the kitchen built away from the main house to keep the heat away, but her house (built in 1748) later had an attached kitchen built on.

My wife does the traditional baked bird, but we supplement it with a honey-baked, spiral cut ham., which has the advantage of being EASY (they are pre-cooked).  We supplement with German pasteries, but of course German or Austrian dishes are not per se American "Thanksgiving fare." Sausage-based dishes are, of course, deeply Germanic and extremely popular in Germany, Switzerland, and Austria. My dad's mom was Bavarian, while his father's side came from a German-speaking region of western Bohemia, which is today the Czech Republic. Czech food is also sausage-rich.

White wines, plenty of lager beers, and Turkey Day NFL complete the perfect Thanksgiving for me. I try to schedule in a full weekend for recovery !

 

max

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

As Southerners, we have cornbread dressing rather than a sausage stuffing, although your recipe sounds delicious. Traditional in our family are turkey, gravy, dressing, homemade cranberry sauce, fresh collard greens, mashed potatoes, homemade rolls and a relish tray. For desserts, I will make a coconut cake with lemon curd filling, and also my personal favorite, Sweet Potato Pie. 

If you are interested, here is a link to my food blog where I have posted the recipe: Aunt Ruby's Sweet Potato Pie

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I love the deviation from treatment and neutrophils to food, Amen!

Ha you may want to skip my post for I'm a vegetarian and my traditions consist of going to my sister in laws home where she cooks the bird so to speak.  Although I noticed where most people bring one dish I bring at least four.  These are my tradional foods I bring.  I start with roasted cashews with fresh rosemary as an appetizer.  I also roast shrimp in olive oil, salt and pepper dressed with fresh dill.  The cocktail sauce has a bit of a twisted kick with half traditional cocktail sauce, chili sauce,  Worchestersire sauce, a bit of Tabasco and lemon. I make a cranberry frozen ice to have between dishes.  Polenta with either fresh sage or rosemary and cheese.  Green beens blanched then roasted topped off with either fresh dill or basil (both really good). Sweet potatoes with fresh cranberries  and Armagnac.  I also infused my own olive oil and a favorite is orange and rosemary.

 

Much to be thankful for and wow look at the PIE!!!!!!

jnine's picture
jnine
Posts: 1
Joined: Nov 2015

I am new to the boards but wanted to wish you well with your transplant when you do have it.  I had mine in August of 2014.  It was an Autologus transplant meaning they used my own stem cells.  This was the second time for me having cancer so they thought a stem cell transplant might keep the lymphoma from returning. I had chemo (RICE) 4 weeks before they did the BEAM so I was not real strong in the first place when they did do the transplant.  Like others, I was in the hospital for a little over a month and, at the time, thought I was doing well.  The BEAM they used to kill my blood cells was so very rough. 

I am still trying to recoup.  My transplant didn't quite go as they had hoped.  They had quite a probelm getting enough stem cells to proceed with the procedure.  They ended up having to get them from my bone marrow and they got just enough to move forward but they wished they had had more of them.  I am 15 months out and still having blood tranfusions.  They just started giving me Epogen shots to try and build up my red blood cells.  The blood transfusions are causing an overload of iron and my kidneys aren't doing the best becasue iof it. So I can only hope that the Epogen shots do the trick. 

I would like to return to work but at this time just don't see how.  I have lost 55 pounds (yea for that!) but I would take the pounds back in a minute if it would make everything else go back to normal.  I am 61 so I just may not be able to ever return to work.  Time will tell.

BUT....in spite of all of it, I am alive!  I wake up every morning thanking God that He chose to give me another day!  I feel blessed that He has made it possible for me to sit and chat with my husband and be able to call my kids every week to see how they are doing.  All of what I've been through was very hard on me but I know that it was doubly hard on them.  I feel my whole family has been holding their breath since I was first diagnosed in late 2010. It was the first time around for me and I was cancer free for over a year then it hit again in late 2013.  So we jumped on the merry go round again.  Then after I was cancer free the second time we jumped back on the "stem cell transplant" merry go round and really haven't gotten off yet.  But I put a smile on my face every day even if I don't feel like it becasue I know it helps all of my family whom I know are watching and worrying about my every move and if a smile helps them get through it then it is the least I can do for them.

So whatever the new year brings to you, keep that smile on your face and bravely meet every day thanking God for all the wonderful Dr's you have watching over you and for waking up yet, another day.

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

I was also scheduled to get BEAM and robably still will once a donor is found. I hav heard how hard it can be although it will be more like 3+ months when they do the Stem Cell. I find it scary at times when a Dr or nurse says, this is how it has to be done and then later they say It's ok, we can bend that procedure a little. We have to trust what they are telling us. Yes you canget a second opinion but when they are collecting stem cells and tell you that have managed to get enough, who you going to call for a second opinion in such a situation?

Right now I am going to enjoy looking of these other recipes.

 

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

Saw the dr at Rush who is in charge of the Stem Cell Transplant. She said the latest bone marrow biopsy did not show any evidence of genetic cell abnormality or lymphoma. So we are going back to using my own t-cells. In the next 3 weeks I will be having a new CT & Pet scan. At today's appt the CBC showed my white cell count very low so I will probably be getting a shot of neulasta in the next day or two which is another reason not much will happen for about 3 weeks. They believe this was from the Rituxan had 2 weeks ago and they want to see if my blood counts will build up enough in a few weeks. (If not we I may have to wait longer.) 

My primary Dr wants me to get an ultrasound on my thyroid and a new blood test next week (4 weeks after she changed the rx). So I start the medical appt/testing merry-go-round again. When I went in today I wasn't sure what they were going to tell me. I didn't not expect that we would be able to use my own t-cells would be one of the results of the bone marrow test. I asked about my brother's test as a donor and he is a partial match but not close enough to be a donor. 

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

Super, Linda.

Forward progress is progess..... I have not studied SCT, but I suppose using your own cells is safer and easier ?

max

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

From what I've read. 

When donor t-cells are used the problem is GvHD (graft versus host disease). Everyone has heard of an organ recepient having problems with their body trying to reject the organ so they take drugs to reduce the rejection. With donated t-cells it is the new t-cells that think the recipient's body is the foreign object and tries to attack it. So the patient has to take drugs to prevent that from happening. Such a reaction can also kill off any remaining cancer cells.

When a person's own t-cells are used there is no worry about the rejection. The down side is tha tthe immune system is the same one that allowed the cancer to grow in the first place. From what I've read this is considered to be easier on the patient. 

I also found out I am not getting Neulasta this time around. I am getting a Neupogen shot each day for 3 days, starting today. I was warend that I could have some bone pain as the marrow kicks into high gear to produce more white cells. I also will have to have a blood test done every week for 3 weeks to make sure the counts are going up. I am still waiting to hear when the CT & PET scans will be done. 

Suddenly I am having that feeling of panic of "what do I need to get done before I go in to the hospital for the procedure?". I still have my lists from back in Nov but that doesn't stop my brain from going into high gear.

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Linda, I'm happy the latest bone marrow results showed no evidence of genetic abnormalities or lymphoma, Wa hooooo!!!  What great news and seems like time is on your side.  Any idea why they did in the past (not 100% sure if they did), false positive???  Drugs kicking butt???  Prayers answered!

Sorry counts are down, story of my recent life.  Take care of those and yourself.  

How are you feeling, tired???

Hope you're well!

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

I did asked if the Rituxan could have killed off those cells but the dr said 'no'. Something about it being a genetic attribute that Rituxan wouldn't catch. The Dr said they studied the latest biopsy very closely to make sure they didn't see any of the abnormal cells. 

I start feeling tired and having little energy back in 2014. I was also having problems walking a lot. My dr found I had some leaking veins which were closed off that same year. The day I had the second vein worked on I saw my dr to find out the results of the thyroid test and she said it was off and changed my meds. That was also the day the mass was found in my abdomen. How much of my feeling tired was from the cancer versus the thyroid, I'll never know. All I can say is that even though I do feel tired all the time it is nothing like it was in 2014. There ar edays I really don't feel too bad. but it is all relative. I do know I need to get 7 - 9 hour sleep to feel goof the next day. Less than 7 I am really tired at the end of the day and more than 9 I am dragging. 

So I just hope those blood cell counts get up there and everything continues to go smoothly. 

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

Jnine,

Your story is a marvelous one; I'm glad you shared.   We have had a deluge of SCT writers  at this Board in the last year -- it is one of the most popular subjects for posting recently.  Every patient a hero, with a long ordeal, either before or behind them, or sometimes both.

 

I hope you continue to share, since many can use your story.  May you continue to give that 'thanks' that you mentioned.  The state motto of my state (South Carolina, in Latin), is While I Breath, I Hope.  It seems to fit you well.   Me, as long as I am breathing, will be fighting to face more days, to never give up, to never decline even the romotest long-shot for wellness.

max

Thelma222's picture
Thelma222
Posts: 2
Joined: Jan 2016

2016-01-21 I wish u the best I'm finally getting close to my stem cell replacement and now I'm getting nervous! I may need a donor which my sister is a match depending on the pet scan! What was it like for you? This site is good I haven't really talked to anyone with simular situations.

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

The dr in charge of the SCT just had me get a new bone marrow biopsy. I am still waiting to hear when we are going to do it. I haven't heard yet if my brother is a match or not. I have a feelings things will start rolling in the next few weeks.

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

Saw the SCT dr last Tues. My blood test showed the white cells were very low so I got 3 days of neupogen shots. I believe I am going to have go into for blood tests for the next 2 - 3 weeks. I am also scheduled for another meeting with the SCT dr the beginning of March. My guess is that if the blood counts are good we will be talking about the schedule for the SCT. Based on the schedelu from last Nov, it looks like I will be starting the SCT mid-March. Starting to pull my stuff together again. 

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

 

Welcome, Thelma. Love the wig !  My cancer center, at the infusion center, used to have wigs free for the women to take. I was looking at them one day, and my wife said, "Those are for the women !"  (I never had a lot of common sense.)  But your doo is lovely.  Please be a regular and let us know how the SCT goes.

The following link is excellent for reading about all forms of chemo. It is a University site; it is on the DHAP article (which your Bio says you received), but it lists every FDA approved chemo drug that there is.   

http://chemocare.com/chemotherapy/acronyms/dhap.aspx

 

max

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