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RICE treatment onto Stem Cell Transplant

lindary's picture
lindary
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Joined: Mar 2015

Met with my oncologist today and the final word on my FNHL is that although the tumor had shrunk a lot after the first 4 R-CHOP treatments, there wasn't much shrinkage after the last two. So my options are to do Rituxan to try and keep the cancer held back. Radioimmunotherapy which I had not read up on at all. RICE followed by possible stem cell. I decided on the RICE with the hope it does what it needs to do so I will be eligible for Stem cell. For RICE I will be getting the drugs over 3 days in the hospital and then home untl the second cycle. After the 2 cycles there will be another scan. If all looks good I will be eligible for the Stem cell. All of this will be done at Rush in Chgo. I am not sure what to expect. 

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

This disease of ours!

I'm sorry to hear your doctors found that the R-CHOP had not done all that they (and you) had hoped. And so you are faced with additional treatment. RICE was discussed with me at one point, as well as stem cell transplant. My own lymphoma sneaked into remission but those options are not off the table for my future. 

You are a very positive person and that will take you far as you move into another phase of treatment. You did very well with R-CHOP (with a bit of a bumpy start) and even continued to work. I have been very impressed and inspired by you. 

I will look forward to hearing updates and will pray for you and your doctors.

Big hugs,

Rocquie

 

lindary's picture
lindary
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Joined: Mar 2015

Thanks Rocquie. I heard from the dr office at Rush. Since my last scan was in June they want me to have one next week. They are going to schedule me next week, early in the morning to avoid heavy traffic. After the test we will wait for the results and then meet with the dr. I think they also said there will be someone from the clinic area there. I am expecting to hear more about the RICE treatment and we will schedule them. I will definitely have the first treatment within the next 2 weeks. Looking at the calendar and trying to see ahead, it looks like I will be doing the stem cell Oct-Nov. I am going to miss Halloween or Thanksgiving. My 2 favorite holidays. 

I will admit that the last couple of days I haven't felt very positive. I think one reason is that all of this will be done at a hopsital that is not close and I don't know. Being there for 3 days for 2 cycles and then about a month for the stem cell, I can't see my husband making that drive a lot. With how bad traffic can be I don't want him doing that drive too often. We'll be doing a lot of talking on the phone. 

Rush is a leading hospital in the country and the couple of times I have been there I have found that the people are great. Their oncology dept is supposed to be one of the best. It is also very big and easy to get lost in. I am sure all will go well and I will feel better as I learn more about what to expect. 

Linda

Rocquie's picture
Rocquie
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Joined: Mar 2013

Hi Linda,

The way it was explained to me, and the way Duke University Hospital handles Stem Cell Transplant:

I could have the RICE at my local hospital. Then I would report to Duke, which is about a 4-hour drive from our home. They have affiliated apartments where patients stay for approximately 3 months, while reporting in to the clinic every day. Experience has shown that staying away from the hospital setting, as much as possible, reduces risks. I was told someone would have to be with me at all times. Our insurance would cover this.

It turned out that I did not need to have the SCT at that time. And I'm sure all hospitals handle things differently. 

I hope you get reassuring answers to all your questions soon.

Blessings,

Rocquie

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I would have had the Rice at our local hospital but my oncologist is on vacation most of this month. She felt since the stem cell would be done at Rush it would be a good idea for me to do teh RICE there so I get used to the staff and oncology area. Makes sense. It is about an hour drive from our house, two hours during rush hour. 

I didn't hear from the hospital today so I gather they are having trouble scheduling me. I left a message and hope they will call me on Monday.

 

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

"RICE" of course is "ICE" plus "Rituxan."   One of the drugs is given in "hyperdosage". The combo is specifically for pre-SCT prep.  Doc told me a few years ago that if I relapse I would require ICE, so I read a little regarding it. (I have not relapsed, and have not required ICE myself.)

I hope everything is successful for you,

max

 

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

 

.

lindary's picture
lindary
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I've been doing a lot of reading on RICE and SCT. Now it's down to learning exactly how my treatments will be done. I kow I am doing the 3 day RICE. I have no idea if I will be able to go back to the office between treatments or have to stay home. All questions I hope to get answers on next week. Or at least some quidance. I have been told that I can bring my computers. (Yes that is plural.) I'm a geek and plan on connecting to work as well as me personal stuff. I will share my experience with all. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Lindary,

Our cancer center does SCT inpatient-only.  Hyperdose R-ICE (even without SCT) is usually inpatient, with neither going home or to work.  All commentators describe R-ICE as very, very harsh, usually much worse than ABVD. Hydration must be carefully monitored to avoid kidney damage, and WBC drugs (neulasta or similiar) are considered manditory.  It is not somethng that one can do on the run...

Some events require that the workaday world be put on hold, even if only briefly.  Best of luck.  I am interested in what your protocol ends up being, since clinics do vary from place to place.

max

lindary's picture
lindary
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Joined: Mar 2015

Max,

The RICE treatment is 2 cycles, 21 days each, with the actual treatment the first 3 days. Are you saying that I will have to be in the hospital the whole 21 days for the cycle? One place where I was reading up on RICE I got the impression that after the 3 days the paitient goes home. The WBC drugs is adminstered either in the office or at home. I had R-CHOP already with few problems. My biggest issue was the withdrawl after the 5 days of Prednisone. I worked 14 of the 15 days R-CHOP cycles. Graned, some days what I did was minimal and I got less day in a day than I usually did, but it took my mind off the treatments. My job allows me to work from home (or hospital). I am really hoping I get all the details this week. 

Rocquie's picture
Rocquie
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Hi Linda, I guess I wasn't very clear above with my reply. I was once considered a possible candidate for a stem cell transplant. I was referred to the Bone Marrow Clinic at Duke University which is about a 4 hour trip from our home. 

I would receive RICE at our local hospital where I would be an inpatient for approximately 3 days for each treatment. 

After the RICE treatments were done, I would go to Duke. As an inpatient, I would have the stem cells harvested and the transplant completed. After I was considered stable enough, I would be discharged to a private, nearby, affiliated apartment. For approximately 3 months, I would report into the clinic, every day, for labs and check up with my physician. 

We live too far from the clinic for it to be feasible to live at home during this 3 months, thus the need for the temporary apartment. Our living expenses during this time would be covered by our insurance. 

Because you are closer to your hospital, I don't know how it will be handled. But it will all be explained to you. 

I believe you will be just fine. You have good doctors and you are going to a wonderful hospital. I'll be following your journey. . 

Hugs,

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Lindary,

Rocquie gave an excellent answer that accords with all that I have read regarding R-ICE. 

I suspect that after the three days of infusions you might be well enough to jaunt home if doing well, but that is pure speculation. Your oncologist or their lead RN/NP could surely answer these questions via a telephone call. 

My neighbor with NHL did some kind of chemo similiar to R-ICE (but he never required SCT), with four days as an inpatient and then about two weeks home back-and-forth for six months, but he was never able to get out of bed, and was not seen outside except when his room-mate would carry him to the car to return to the hospital.  Continuous inpatient care would have surely been much easier and safer for him. 

I hope RICE and your entire process is much easier, and also hope that safe returns home are OK for you. No two cases of even the same disease at the same stage and with the same drugs are ever identical here. Some patients are hospitalized for months on various drugs, and others are never hospitalized.

max

lindary's picture
lindary
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Joined: Mar 2015

It keeps getting more and more interesting. The nurse from my oncologist's office is back from vacation and called me. I told her what conversations had been had and all that. She informed me that Rush often has problems getting approval for Rituxan when the treatment (like R-CHOP) is started at another location because the insurance is reluctant to ok it being given at Rush. So she said what will be done is I will go to Rush for 3 days for ICE. Then day 4 at home and day 5 at my clinic getting the Rituxan. I am still waiting to hear back from Rush to find out when we have to go there to get things started. I just want to get things started.

 

Linda

 

lindary's picture
lindary
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After some mis-communications I finally got the appts for today at Rush. The blood draw, dr and last the CT scan. The dr's assistant when over the major points of the blood test. Number look good and osme are better than they would expect for someone who had dones 6 cycles of R-Chop. I will get a call tomorrow with the results of the CT scan and then schedule the ICE treatment. I'm looking at maybe starting it on Thur. Then I can have my clinc schedule the Rituxan on Monday. Let's see if this goes smoother than trying to arrange the tests. 

Rocquie's picture
Rocquie
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Linda, they really do have you on a merry-go-round! I hope things smooth out for you before you begin treatment.

Hugs,

Rocquie

lindary's picture
lindary
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Things did go better today. The medical assistant to the dr at Rush called me to go over the CT scan results. Tumor has grown a bit since June but that is not surprising since I have not had any chemo or Rituxan since June. The plan is for me to start the ICE chemo on Thur, if there is a bed available. I will be notified Wed after 5 pm on that. This way I'll be home on Sunday and at my oncolgist office for the Rituxan and Nurlasta on Monday. Before I head home I iwll also know how often I have to get a blood test done. As goofy ans things may be I keep reminding myself that this is only 2 cycles. Then another CT scan (probably at Rush) to see what progress was made and if Stem Cell is next. At least I feel like there is a plan in place. 

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

Lin,

Yes, there is relief in having a plan in place and a schedule that a patient can orient themself around.  You know that everyone here is checking daily on you and pulling for you to get through this easily and successfully,

max

lindary's picture
lindary
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Everything is coming together. I was told I would hear from the hospital after 5 pm and the called about 6:30pm, about 20 mins after I got home from work. I need to be there about 8 am so I am getting my stuff together. Since I will be there 3 days I am bringing both latops with (work and personal). Our youngest lives in the city and is going to visit me on Saturday. Now that things are rolling I am feeling more comfortable about everything.

lindary's picture
lindary
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Today has gone well. Got the first day of the treatment. Tomorrow is when I start the drugs that takes 24 hrs. 

 

 

lindary's picture
lindary
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Just finished my first round of iCE. I go home tomorrow and then on Monday go to my oncologist for the Rituxan and Neulasta.

Only issues during the ICE was when I was getting the Ifosfamide the pump kept beeping every 90 - 120 mins for "air in pump" They said this is because the drug is fizzy. Usually it was right around the time I was going to go to the bathroom to pee. But it did leave me tired. 

Other good news is that my son & daughter-in-law are at the hopspital having a baby. This is #4!!

 

 

Rocquie's picture
Rocquie
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Linda, you are amazing! You made it through your first ICE treatment and the most negative thing about it was a beeping pump. Bless you. I hope you stay in your PJ's and rest all day before going for your Rituxan Monday. 

Thank you for the update. I have been thinking of you all weekend. And I suppose #4 has been born by now? Smile

Blessings,

Rocquie

 

lindary's picture
lindary
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Actually I got dressed today. It is my way of telling myself life goes on and I have things to do. Plus it was a nice day too. 

My newest grand daughter was born last night at 8:40 pm. She is 8 lbs 3 oz and 21 inches long. Little bigger than their first 3. The neat thing that my one daughter got the to pick up the other 3 from the hospital. Just as they were about to leave the nurse came out and told them that if they stuck around for a bit they would get to see the baby. It was about 30 mins but then Haley was born. Her brother & sisters got to see her before their sleepover at the auntie's place. They sent out some great pictures. 

I can't visit with them right now but we did skype so I could see mom & the baby. My daughter-in-law is doing good. They are both spending a second night at the hopsital. Main reason is mom had Group B strep and they need to keep the baby there 24 hours. So mom is taking a break from the other 3 for another night. Dad will have them tonight. 

I have Rituxan tomorrow. Also need to do an online meeting for work. Will be interesting since I've never done one during chemo. Right now I am tired from the last 3 days. Peeing a LOT with all of the fluids pumped through me plus the chemo brain, mainly in the evening. One thing I know for sure, I am going to bed early. I think it all went well. 

 

LindaSmile

lindary's picture
lindary
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I forgot my laptop so no meeting when I went to the Rituxan treatment. Good thing because I was at a different location for the clinic and I was in a large room with a bunch of other people. I don't think they would have appreciated my meeting conversation. Still very tired and took little naps throughout the whole thing. Could't wait to get home to lay down. Today was better. I was still kind of dragging when I got up but not tired. Just lack of energy. As I went through emails and dealt with some of the stuff going on I realized I was also feeling better too. After putting in a day's work I laid down on the couch but did not go to sleep. Just needed to lay down. Trips to the bathroom are fewer and longer apart. When I came home from the hospital I weighed myself and I was up 20 lbs. They are now gone and I feel better for that too. I have some blood tests scheduled. I am just going to keep working from home and manage stuff at work the best I can.  

OO7's picture
OO7
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Sorry I have been away.  Different day another story.  I have thought of you from time to time and wish things were easier.  I won't go into my stuff or why I as away but I hope you know how incredible you are.  This is hard stuff but fight harder than you even know possible.  You're smart and strong.  Your mind is your weapon.  Stay strong!  When you need kick a_ _ backup, message me I' m there.

I'm praying for you and Believe in you.

 

 

lindary's picture
lindary
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Was getting down last week with the counts. The White cells and platelets were really low. When I saw the specialist on Friday I was planning on him ordering a platelets transfusion. Instead he said how the white cell counts we now in acceptable range and the platlets were coming back strong. That made me feel a lot better. I am getting another platelets count done on Tuesday. If it is over 75 then I should be heading for the the second round of RICE on Thurs. If not, he would prefer to wait an week for start the next round of RICE. I keep telling my body to get to work creating those platelets. I do not want to delay the treatments. I am going into the office on Wed to see my co-workers and meet with my new boss (also a former boss). They have done a reorg of our areas and I really want to talk to her as to what she wants me to do. She is a breast cancer survivor and is one of my go-to people with all of this cancer stuff. 

 

So how have you been? More important, how is your health doing?

OO7's picture
OO7
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A while back my counts were bad.  Actually they were never good through treatment and kept falling and never went up.  They suspended treatment and all antibiotics.  I was testing my blood frequently then was about to get Neulasta and bam Progress.  My point is, I was upset.  I felt like I was doing everything right and nothing was helping.

It's easy to slip on this road and get a mental and physical bruise.  That's when the boxing gloves come on!

As for me, I'm physically great.  I still have shortness of breath which is not getting better but worse.  I have a new specialist who is very curious and interested in figuring it out.  MRI is next week.

My hell centers around losing my Father.  

Its been awlful.  There are so many terrible things that have happened, watching my father while hiding my own cancer from my family....ridiculous yet necessary.  I was with my father in the end.  We were told six months and got 48 hours.  He left at 2:53 in the morning and a month and six days later I still wake up at the same time every morning.

I thought I would be able to shed this horrible secret when my father passed but my mother is destroyed and now I'm protecting her like I was my father.

 

Of course this is the simplest version of my story.

For me what is important is to annihilate cancer and kick it where the sun don't shine.  Be happy when I'm sad, laugh when I want to cry, fight when I feel defeated and always get up swinging.  

All my BEST!

lindary's picture
lindary
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I am sorry to hear about the loss of your father. Even worse when youare told he should have 6 months and it turned out to be only 2 days. What a shock to your whole family. So many suggestions are running through my head right now. I will spare you from having to listen to them. Based on past conversations I am sure you have already run many of them through your own mind and you know your family. I hope the day will come when you will be able to tell them about your cancer.

I pray the specialist can figure out what is going on with your breathing and that the cause is not cancer related. Isn't it ironic that they pull you off everything and then your counts finally did start building up. I hate how we can do whatever we think is right and not know if it is relly helping or not. Until the test (CT/PET) is done to show if there is still cancer or not. The only thing I am sure of is drinking a lot of water during and after treatments to flush the extra drugs out of the system.

I wish you all the best too. Keep up the good fight.

OO7's picture
OO7
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My counts sored immediately they pulled the plug on the meds..  Eight months they were bad.  Lots of head scratching, little listening to me.  Rituxan is fabulous but hard on me.  A bit harder than most.  I'm not complaining, I received the best outcome possible.  My issue is not cancer.  Too many scans, makes me nervous but thankfully I'm good. Most likely a side effect that is taking it's time and lingering on.

Hydration is an absolute.  I don't drink water, it's always been a problem for me.  

 

I recieved the best outcome yet my father recieved the worst.  It's so unfair.

 

When I lost my father, I wondered why he had Mantel and I follicular?  Three weeks apart in diagnosing and I had to witness his hell while he blindly knew mine.  I knew I was better to fight it.  What a nightmare.  I feel guilty for surviving so well in the wake of his loss.

 

Tomorrow is a day we can both climb a new and higher mountain!  Let's do it!

 

 

lindary's picture
lindary
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Who knows why things happen the way they do. Like you said we can only go forward. 

I got good news in that my platelet count is up to 180. My oncologist is sure that the sepcialist doing the RICE treatments will decide to go ahead with the second treatment starting this Thur. I should hear from him or his office tomorrow. It's mountain climbing time!!!

OO7's picture
OO7
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What a great sign, now anillate this crap once and for all.  If treatment goes ahead tomorrow, I will be sending you power and peace along with a steadfast calm that cancer has never seen before that will shake it cells into oblivion.

Be extra good to yourself, you're not only climbing mountains but about to rule your world and reclaim your universe! 

You Got This!

 

 

lindary's picture
lindary
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Got the call from the hospital to check in tomorrow. Choice of 6:30 am or 10 am. We are going in at 10 am. It's about an hour drive. I did go into the office today and I think your "charge up the mountain" theme went with me. Several people commented how I didn't act like someone who was going through chemo or going in for a treatment tomorrow. My laptops are ready to go.

OO7's picture
OO7
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Thought of you today destorying and conquering bad cells!  Warrior you are!

I hope you take time to be good to yourself, rejoice and relax.  Breath easy.  Job well done.

lindary's picture
lindary
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Checkin at 10 but day 1 of chemo not started until 5 pm. They had to do some blood tests and such first. Clock in romm doesn't work. Other little problems like auto-blood pressure machine broken so the nurses had to do it manually. Today day 2 of chemo started at 5 with the caroplatin followed by the etoposide. Nurse called pharmacy for Ifosfamide while the etoposide was running. Was told they just completed a bunch of orders and sent them out, then hung up. She called back when the etoposide was done and was then told they were just working on it. It is not 8 pm and it is still not here. Hopefully the change didn't cause another delay. Last time I was told I could not be release until 24 hours after the Ifosfomide was done. At this rate they won't be discharging me until 8 or 9 pm on Sunday. I hope they don't decide I have to stay until Monday. That would mess up the scedule for the Rituxan treatment on Monday. All I can do is go with the flow. Nurse I had today said I was the easiest patient she had. That made me feel good. 

OO7's picture
OO7
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That does not sound like a fabulous day but what made you feel good through all of that says a great deal about you.  Patients is a virtue and you have it.  Good for you.  I would have been a nervous wreck and in a rather pissy mood, giving me all sorts of negativity .  You graced the day in what sounds like a perfect manner and you will reap the benefits.

I hope you're not in the hospital longer than expected but if you are how can we make this pleasant for for you? 

Regrettably I'm horrid at telling jokes but might I recommend pulling up Ellen on your computer and watch a few episodes and allow yourself a giggle or two.

I'm sending you peace and strength.  Rest and reach out if you need.

 

lindary's picture
lindary
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The good news is that since I had no after effects the last time they sai I could go home on Saturday. The bad news is that the Sat chemo didn't get done until around 8:30pm. We got home a little after 10pm. I slept until noon the next day, with breaks for the bathroom. Today I had the Rituxan and Neulasta. Now I need to find out when the appt will be with the specialist. Still feeling the affects of the chemo fog. 

lindary's picture
lindary
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Blood tests scheduled for this Friday and next week Tuesday. Then I go to Rush next week Friday for another blood test and meeting with the specialist there. From what I understand he will go over what is next and the schedule which is probably for a bunch of tests. I iwll admit that the stem cell doesn't bother me as much as having to be in that hospital for 2 - 3 weeks for stem cell. Their menu is poor. It didn't change one bit from last month and some of the meals I don't even sound good. I barely make it through 3 days and don't know how I will get through a longer period of time there. When We start talking stem cell I will need to talk to them about food. 

Rocquie's picture
Rocquie
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I don't believe there is a hospital around that is known for their delicious food. But when you think of how many patients they are feeding and all the different types of diets people are on, it gets easier to understand why the food is so lifeless. I was personally on a neutropenic diet which meant no fresh fruits or vegetables, which are ordinarily a major part of my diet.

During my hospitalizations, I learned a few things. Each meal came with a menu for choices of the next meal. I learned I could order everything on the menu. I could pick and choose what I would actually eat and often my husband would eat some of it too. I always ordered extra condiments, salt and pepper, lemon juice, soy sauce, so I could add more seasonings to my food. When I ordered oatmeal, I asked for cinnamon, brown sugar, and raisins. I would write in things that were't listed like yogurt, cheese and crackers, fruit (which in my case was canned) tuna salad. A couple of times I even got chocolate milkshakes. I don't know if you will get these freedoms but it is worth asking.

Another thing I know is that the food served in the hospital cafeteria is often more flavorful than the patient trays. When my husband spotted something he thought I would like, he would bring me some.  

Hang in there. . .you are doing great.

Hugs,

Rocquie

 

lindary's picture
lindary
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I've kept in mind that Rush is a very large hospital and they can't have too many options for the patients. It wold be hard to cook. That do have a Tilapia crusted with tortella like covering and mexican spices that isn't bad. Although their salsa is terrible. I am the opposite from you, I am finding with not having fresh fruit and veggies However, I am in the habit of having a banana every day largely for the potassium. They actually have yogurt listed as well as crackers. I tried the yogurt once. I am not a fan of yogurt and only eat the Yoplait chocolate whip. I just want to be able to keep up with may daily chocolate yogurt, V8, nutrtional drink (which they will give) and protein shake. But you do have a lot of good suggestions. I like the idea of stock piling condiments. Asking about a milshake also sounds great. Thank you so much.

lindary's picture
lindary
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Decided to update this thread. Third Rice was Oct 1. Had 2 blood transfusions, one before chemo started and one the second day of chemo. This time they did not let me leave early because last time I ended up gett a little dehydrated after I got home.  So after sevral blood test and eventually a blood tranfusion last week I am feeling better. Pet Scan & CT scan came back all clear. Still have no heard the results of the bone marrow biopsy. Had pulmonary & heart tests on Monday with some meetings on Tues. Looks like I am in the final stretch towards Stem Cell Transplant. Right now the SCT team is in charge of my case. Next Monday I meet with the Dr in charge of my case. Later in the week I start the shot to increase the t-cell growth. 

I know the chemo given as part of the SCT kills off the bone marrow but it never quite hit me that meant all the immunities I built over the years are also going to be gone. This revalation came to me when teh SCT nurse told me that after STC is done the dr will give me a list of immuzations I will need to get, like MMR. When they say that with SCT you start a new life, they are right. At first I compared it to be like a new baby but then I remembered that a new baby at least he gotten immunities from the mom. I won't even have that. That is why sites about SCT say that it can take years to get the immunities back to "normal". 

One of the drugs I will be given is know for causing mouth sores. The SCT nurse said the best way to try and avoid or at least lessen the sores is to drink a lot of cold liquids and eat ice cream. That made me think of the milkshakes. Yummy.

OO7's picture
OO7
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I have been thinking of you and wondering how you have been doing with treatment.

It's weird, right?  No immunitpies.  Don't like that with you going into cold and flu season no less.  Earlier this year my counts were just above .5.  Not good and my family was SICK.  I rushed both my husband and son on two different occasions to the emergency room for illnesses.  I never got sick, it was all around me.  My doctors were worried yet I was sleeping on the cold floor next to the toilet helping my son Then rushing him into the hospital.  I know I take heat for my healthy eating on this site but I totally think it helped.  Especially my green juices, I still make them.

Yet et another road to travel...

Biotene mouth wash helped my mouth sores.

Lay low and take care of yourself!

Enjoy the shakes!!!!!!

lindary's picture
lindary
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For me it is always chocolate. 

I love Biotene and may keep taking it even when this is all done.

Even though your white count was low you still have the imunnities you've built up over the years so the white cells that were there already had an attack plan. After Stem Cell my white cells are all going to be trainees learning how to fight the germs and other bad things. They will only get that training by being exposed to germs but if too many germs or too many different germs, I could end up back in the hospital with a bad fever. Going to be fun times. 

Next week I will be tsarting the shot to increase the t-cells creation. I told my husband that he has to come with me to learn how to give the shot. There is no way I can give myself a shot. I hate needles, still.

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