I have been seeing an oncologist twice a year for my watch since 2010.
So far I feel very blessed. My heart condition is of more concern. I’m 81 yrs old.
I was diagnosed with Waldenstrom’s in 2010. I have not had any disabilities from it that I recognize. It always show up in my twice yearly blood checks. Is there anyone else experiencing this?
I was diagnosed with Waldenstrom’s in 2010. I have not had any disabilities from it that I recognize. It always show up in my twice yearly blood checks. Is there anyone else experiencing this?
Hi @lesliemont Starting treatment can feel pretty scary when you don’t know what to expect. I’ve been there myself along with so many others here in the forum. But we do what we have to in order to go on enjoying our lives.
The type of chemo you’ll be taking, just like @badnewsforme, will be on a cycle…usually monthly for the duration of the treatment.
First a little bit about the procedure. You’ll most likely be going to what’s called an infusion center. It’s generally a pleasant large room or private rooms in a cancer center clinic where other patients will also be receiving their infusions. This is all done by IVs. So you’ll have a small IV line put in, looks very much like the type you have when you have blood draws.
The IV solution is given slowly, especially with initial doses. It’s very common with the rituximab to have a little reaction the first time. But with these infusions, you’ll have a nurse right there with you so if you feel anything unusual let them know right away and they’ll push Benadryl into the IV and that calms the reaction right down.
The infusion areas are either in a large, pleasant room with lounge chairs or some places have private rooms. Everyone is there doing the same thing so sometimes it’s nice to have company. There’s always a TV but feel free to bring an iPad or tablet, (there’s always wifi). reader, books, knitting, etc. to help pass the time. The IV carts are battery powered so you get up to walk around or use the bathroom. None of it’s painful…just time consuming.
As the chemo starts working over the month between treatments you may start feeling very tired and not quite yourself. That’s ok it’s normal. The drug is killing off cancer cells but it’s not discriminatory so it will also reduce the number of red/white blood cells and platelets. 7-14 days after your last iv you may feel tired mentally and physically. That’s called the neutropenic or nadir period. This will be when your blood numbers are at their lowest. But then miraculous they start rebounding and you start feeling human again.
It’s very important during the months you’re in treatment to avoid getting ill. With your blood numbers down you’ll be very immune-compromised. Your body won’t be able to fight infections well. Basically, follow the strict Covid guidelines to help keep you safe. Wear a mask when you’re out in public, avoiding sick people, wash/sanitize your hands frequently. You’ll also have to be mindful of what you eat…avoid raw sea food, deli meats, no buffets or things like artisan cheeses that aren’t pasteurized. It’s also important to take your temperature daily and let your oncologist office know asap if it ever goes to 100.4. They will be watching for what’s called a neutropenic fever and want to know immediately if you do develop one. It would mean a trip to the hospital for antibiotic IV. (This is not meant to scare you…it’s something that can happen though so I want you to be prepared. I always kept a little bag packed with necessities for a couple day stay at the hospital).
I know, it’s a lot to take in, but you’re going to get through this one day at a time and then you’ll be able to get back to enjoying your life to the fullest.
Do you have a friend or family member who can go with you to your infusion sessions?
Not sure how this all works, but I am responding to the post above. Thank you for making me feel more comfortable. I am 74 years old and have been on watch and wait for 1-1/2 years, feeling good, but now need to begin chemo due do numbers quickly moving in the wrong direction. It seems to be exactly the schedule you are following, with the rituxin and bendeka at 3 days per month. I hope I sail through it like you seem to be doing.
Leslie F.
Hi @lesliemont Starting treatment can feel pretty scary when you don’t know what to expect. I’ve been there myself along with so many others here in the forum. But we do what we have to in order to go on enjoying our lives.
The type of chemo you’ll be taking, just like @badnewsforme, will be on a cycle…usually monthly for the duration of the treatment.
First a little bit about the procedure. You’ll most likely be going to what’s called an infusion center. It’s generally a pleasant large room or private rooms in a cancer center clinic where other patients will also be receiving their infusions. This is all done by IVs. So you’ll have a small IV line put in, looks very much like the type you have when you have blood draws.
The IV solution is given slowly, especially with initial doses. It’s very common with the rituximab to have a little reaction the first time. But with these infusions, you’ll have a nurse right there with you so if you feel anything unusual let them know right away and they’ll push Benadryl into the IV and that calms the reaction right down.
The infusion areas are either in a large, pleasant room with lounge chairs or some places have private rooms. Everyone is there doing the same thing so sometimes it’s nice to have company. There’s always a TV but feel free to bring an iPad or tablet, (there’s always wifi). reader, books, knitting, etc. to help pass the time. The IV carts are battery powered so you get up to walk around or use the bathroom. None of it’s painful…just time consuming.
As the chemo starts working over the month between treatments you may start feeling very tired and not quite yourself. That’s ok it’s normal. The drug is killing off cancer cells but it’s not discriminatory so it will also reduce the number of red/white blood cells and platelets. 7-14 days after your last iv you may feel tired mentally and physically. That’s called the neutropenic or nadir period. This will be when your blood numbers are at their lowest. But then miraculous they start rebounding and you start feeling human again.
It’s very important during the months you’re in treatment to avoid getting ill. With your blood numbers down you’ll be very immune-compromised. Your body won’t be able to fight infections well. Basically, follow the strict Covid guidelines to help keep you safe. Wear a mask when you’re out in public, avoiding sick people, wash/sanitize your hands frequently. You’ll also have to be mindful of what you eat…avoid raw sea food, deli meats, no buffets or things like artisan cheeses that aren’t pasteurized. It’s also important to take your temperature daily and let your oncologist office know asap if it ever goes to 100.4. They will be watching for what’s called a neutropenic fever and want to know immediately if you do develop one. It would mean a trip to the hospital for antibiotic IV. (This is not meant to scare you…it’s something that can happen though so I want you to be prepared. I always kept a little bag packed with necessities for a couple day stay at the hospital).
I know, it’s a lot to take in, but you’re going to get through this one day at a time and then you’ll be able to get back to enjoying your life to the fullest.
Do you have a friend or family member who can go with you to your infusion sessions?
Hello Lori and group, IVIG infusions continue for autoimmune condition. Receiving every 3 weeks on a different schedule from Waldenstrom treatments. Infusions have been well tolerated with minimal side affects.
For Waldenstrom treatment I’m receiving Bendamustine (Bendeka) and Rituximab (Rituxan) once a month on 2 consecutive days each treatment. First treatment was split between the 2 medications and given over 8 days. This was an attempt to minimize side affects. Extreme fatigue and increased blurred vision on the day of treatment. Fatigue issues improved after 48 hours. Blurred vision was a problem before treatment started and continues. This may be related to blood viscosity elevation.
Second round of chemo Aug 28 & 29. Will update following treatment.
Best to all!
Not sure how this all works, but I am responding to the post above. Thank you for making me feel more comfortable. I am 74 years old and have been on watch and wait for 1-1/2 years, feeling good, but now need to begin chemo due do numbers quickly moving in the wrong direction. It seems to be exactly the schedule you are following, with the rituxin and bendeka at 3 days per month. I hope I sail through it like you seem to be doing.
Leslie F.
Welcome to the club, @badnewsforme We just had another new member join the WM group yesterday. @bacord83 was recently diagnosis with Waldenstrom and hasn’t started treatment yet and is researching options, since this is new to her. Maybe your experience with the IVIG and Chemo will help her get a better understanding.
You were diagnosed with MGUS in 2020 and then your disease progressed to Waldenstrom’s in about 3 years? That’s when you began receiving IVIG infusions. Which is used to treat inflammation or autoimmune conditions. https://www.healthline.com/health/ivig-infusion
How did you do with the IVIG infusions? Any side effects?
When your condition progressed further you then began chemo treatments. Could you let us know the name of the treatment?
Thank you for sharing your story here! It takes a village and we never know how many people we can help when post our experiences. ☺️
I know it’s pretty early in the game but have you noticed any side effects from the chemo?
Hello Lori and group, IVIG infusions continue for autoimmune condition. Receiving every 3 weeks on a different schedule from Waldenstrom treatments. Infusions have been well tolerated with minimal side affects.
For Waldenstrom treatment I’m receiving Bendamustine (Bendeka) and Rituximab (Rituxan) once a month on 2 consecutive days each treatment. First treatment was split between the 2 medications and given over 8 days. This was an attempt to minimize side affects. Extreme fatigue and increased blurred vision on the day of treatment. Fatigue issues improved after 48 hours. Blurred vision was a problem before treatment started and continues. This may be related to blood viscosity elevation.
Second round of chemo Aug 28 & 29. Will update following treatment.
Best to all!
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I have been seeing an oncologist twice a year for my watch since 2010.
So far I feel very blessed. My heart condition is of more concern. I’m 81 yrs old.
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1 ReactionWelcome @sagenest. It sounds like your diagnosis of Waldenstrom's is being managed by active surveillance or "watch and wait". For that reason, I moved your post to this existing discussion:
- Waldenstrom macroglobulinemia: What to expect during watch & wait?
https://connect.mayoclinic.org/discussion/waldenstrom/
I did this so you can connect with others living with WM like @lesliemont @bacord83 @ejrquast @badnewsforme @elainerose @psue4 and many others.
Sagenest, are you in the care of a hematologist?
I was diagnosed with Waldenstrom’s in 2010. I have not had any disabilities from it that I recognize. It always show up in my twice yearly blood checks. Is there anyone else experiencing this?
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1 ReactionMy wife had it but it did not work on her case. But there is a high rate of succes for those patients with MM
Thank you. My oncologist explained a lot, but you added even more info. I feel upbeat and like I am in good hands!
Leslie F.
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1 ReactionHi @lesliemont Starting treatment can feel pretty scary when you don’t know what to expect. I’ve been there myself along with so many others here in the forum. But we do what we have to in order to go on enjoying our lives.
The type of chemo you’ll be taking, just like @badnewsforme, will be on a cycle…usually monthly for the duration of the treatment.
First a little bit about the procedure. You’ll most likely be going to what’s called an infusion center. It’s generally a pleasant large room or private rooms in a cancer center clinic where other patients will also be receiving their infusions. This is all done by IVs. So you’ll have a small IV line put in, looks very much like the type you have when you have blood draws.
The IV solution is given slowly, especially with initial doses. It’s very common with the rituximab to have a little reaction the first time. But with these infusions, you’ll have a nurse right there with you so if you feel anything unusual let them know right away and they’ll push Benadryl into the IV and that calms the reaction right down.
The infusion areas are either in a large, pleasant room with lounge chairs or some places have private rooms. Everyone is there doing the same thing so sometimes it’s nice to have company. There’s always a TV but feel free to bring an iPad or tablet, (there’s always wifi). reader, books, knitting, etc. to help pass the time. The IV carts are battery powered so you get up to walk around or use the bathroom. None of it’s painful…just time consuming.
As the chemo starts working over the month between treatments you may start feeling very tired and not quite yourself. That’s ok it’s normal. The drug is killing off cancer cells but it’s not discriminatory so it will also reduce the number of red/white blood cells and platelets. 7-14 days after your last iv you may feel tired mentally and physically. That’s called the neutropenic or nadir period. This will be when your blood numbers are at their lowest. But then miraculous they start rebounding and you start feeling human again.
It’s very important during the months you’re in treatment to avoid getting ill. With your blood numbers down you’ll be very immune-compromised. Your body won’t be able to fight infections well. Basically, follow the strict Covid guidelines to help keep you safe. Wear a mask when you’re out in public, avoiding sick people, wash/sanitize your hands frequently. You’ll also have to be mindful of what you eat…avoid raw sea food, deli meats, no buffets or things like artisan cheeses that aren’t pasteurized. It’s also important to take your temperature daily and let your oncologist office know asap if it ever goes to 100.4. They will be watching for what’s called a neutropenic fever and want to know immediately if you do develop one. It would mean a trip to the hospital for antibiotic IV. (This is not meant to scare you…it’s something that can happen though so I want you to be prepared. I always kept a little bag packed with necessities for a couple day stay at the hospital).
I know, it’s a lot to take in, but you’re going to get through this one day at a time and then you’ll be able to get back to enjoying your life to the fullest.
Do you have a friend or family member who can go with you to your infusion sessions?
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3 ReactionsJust watch & wait for now. Next blood tests in October
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1 ReactionNot sure how this all works, but I am responding to the post above. Thank you for making me feel more comfortable. I am 74 years old and have been on watch and wait for 1-1/2 years, feeling good, but now need to begin chemo due do numbers quickly moving in the wrong direction. It seems to be exactly the schedule you are following, with the rituxin and bendeka at 3 days per month. I hope I sail through it like you seem to be doing.
Leslie F.
@bacord83 have you had any follow up about treatments? Or watch and wait?
Hello Lori and group, IVIG infusions continue for autoimmune condition. Receiving every 3 weeks on a different schedule from Waldenstrom treatments. Infusions have been well tolerated with minimal side affects.
For Waldenstrom treatment I’m receiving Bendamustine (Bendeka) and Rituximab (Rituxan) once a month on 2 consecutive days each treatment. First treatment was split between the 2 medications and given over 8 days. This was an attempt to minimize side affects. Extreme fatigue and increased blurred vision on the day of treatment. Fatigue issues improved after 48 hours. Blurred vision was a problem before treatment started and continues. This may be related to blood viscosity elevation.
Second round of chemo Aug 28 & 29. Will update following treatment.
Best to all!
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3 Reactions