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Joannec's Cancer Blog

Mantel Cell setback

Hello everyone. its been probably a week or so since posting. Let me remind you I was diagnosed with mantle cell lymphoma. I hada severe reaction when they tried to give me the rexatun cocktail. My blood pressure reading could not be raised over 60. After virtually putting my head down and my feet up for quite a long time while applying oxygen to me they eventually got my reading up to 100. I can remember feeling flushed and not quite right. They say I was answering questions and talking.I really dont remember.When I looked up I saw my oncologist staring down at me. Ican remember apologizing to her for bothering her. I am still a people pleaser.They decided not to restart the drip my reaction was considered too severe. Next day I went in for the actual chemo drip. 10 minutes no problem. Next dat same thing 10 minute chemo drip no problem. How can I take that drug ok and have such a problem with the other? Now my oncologist wants to send me to an allergist. They want to do a 2 hour apt. of prickly tests That stinks. I do not even know if i had a complete cycle of chemo or not. I know the next morning I felt fine then suddenly had such a case of the dry heaves and every morning afterwards Yesterday i went to kohls to shop and after 1 hour I was huffing and puffing so hard I could not catch a breath. I did not know if I could walk to the car. Thats after 1 round of chemo whats it going to be like after 6 or a stem cell transplant. I am thinking about moving to florida to be near my grandchildren. I think emotionally I will fare better. Now I just have to figure out how to get there. Sometimes late night I start to feel sorry for myself and shed many tears. I think of all the moments I might miss with my kids and grandchildren. That seems hardly fair since I always wanted to be a grandma.My most precious role. I just feel like i am always getting passed on to another doctor with another problem. No one seems to talk to me and explain things. Any pearls of wisdom for me? Any advice? Please let me know how you deal with setbacks?? Please keep in touch and many smiles. Till next time Joann

Deborah threw a punch at your cancer.
Janelle38 sent you a prayer.
Janelle38, Stefanie sent you a hug.
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Hi Joann, not sure I have any words of wisdom but I do know a lot of people have a reaction to Rituxan. I did too, they had to stop the drip and pump me full of Benadryl because everything started itching, my ears, my throat. It wasn't fun. But there are a lot of options out there in terms of treatment, it's just a matter of finding the one that works for you. Keep taking to your doctor, especially if you aren't feeling right. Some symptoms, like fatigue, are to be expected, but if you think it's just wrong then it probably is.
You are on a very difficult road. We have been on a similar road only since Halloween of last year and it's been one setback after another, every doctor specializes in one thing and then you have to see someone else. I'm not saying this is easy but you will learn to be patient because this is the way it works. It makes you want to scream or kick someone. I would say be close to your family if you find a way. I will keep you in my thoughts and prayers.
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First day of chemo fiasco!

My first day of chemo for mantle cell lymphoma was a complete disaster. For valentines day I got to go for a last minute pet test. I got home from that at 7pm and turned around and was back uo at dana farber for my first chemo treatment at 7:30 am. They did my bloodwork and it was explained to me it would be 8 hours long. So i took every electronic device I had with me. One regular tablet. One kindle fire for reading. Music and my computer; See I had these visions of myself sitting there watching shows and getting through this first hurdle. Finally the drip was started and I was excited. Here we go I thought. This is me being proactive. I felt like it had been about 2 hours. I started to feel flush annd sweaty. I felt sick to my stomach. How can this be I thought? My husband started looking at me and asked what was wrong? i explained the symptons and he said hit the nurses button. I did not want to because i felt it would pass and did not want to be a bother. I started to see black spots and I hit the nurses button. Thats all I remember for a while. Apparently my blood pressure dropped to low and they could not raise it. My head went down my feet up and a call was made to my oncologist to get there. They put oxygen on me and that felt better . Slowly and I mean slowly they got my pressure up. My oncologist decided because it took me pressure took so long to come up that she would not start the retuxan drip again. which means I have to reschedule this again and I will be a week behind. They tell me its not unusual to have a bad reaction to this drug. The next time they give it you may have no reaction at all. They give you more oral medications to combat that! Now Im terrified of the chemo on thursday and friday. How do i knnow it will not happen again? whats real and whats in your head? Can nothing just be simple? Can nothing just go right? why every step I try and take forward do I end uo two steps back? Has this happened to you? When do we get a break. In the end I had 18 minutes of the drug and I thought it was two hours.I got home at 4pm. A complete day wassted. Nothing accomplished! How can you not be upset? What do you do when you feel like this? who do you reach out to? Do you sink into a pity party because thats pretty easy to do. A cancer diagnosis is devestating . Do you have to loose your hopes and dreams? Do things get better? What is the new normal? I am only about 7 days into this diagnosis and this will be something to live with the rest of my life? How did you make these adjustments? Please lets stick together and share our thoughts and experiences? I believe we canĀ  help eachother because we are the ones who truly understand what we are going through. I am wishing positive thoughts for allĀ  of you! keep talking! Untuil next post share the good and the bad.

Janelle38 sent you a prayer.
Susan sent you a hug.
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I too had a bad reaction to my first Rituxin treatment, although different than yours. It was the worst chills I've ever had, teeth chattering so hard I thought they would break! I believe they gave me both benadryl and steroids to calm it down. After an hour or so they resumed the drip, much slower. I had 7 more r-chop infusions never another reaction. And as each one went past they sped up the rate of drip. By the eighth treatment I was down to a 6 hour session. I know each of us reacts differently, but I hope you won't have any more bad experiences.
Oh no, terrible day. Between being diagnosed with pancreatic cancer and the start of chemotherapy, my husband came down with acute pancreatitis and then had to have his gallbladder out with emergency surgery. He had 3 weeks in the hospital being very sick. It was so difficult seeing him like that. He became septic from the gallbladder. We got the devastating diagnosis and had to put off the beginning of chemo because his health went into an acute downward spiral. We felt like we took 4 steps backward in the first month. This treatment usually doesn't go as planned as you may know from caring for your husband. I wish you better luck in the coming weeks. I agree, it helps me to keep talking with people going through similar struggles, I feel we are not alone.
There's precautions they can take to assure there is not an instant replay of this next time, such as slow the drip down. That reaction may never occur again. Have you considered taking a pharmaceutical? The first week of radiation, I took Valium and it helped greatly. By week two I got used to radiation and no longer needed it. It's still early for you and your mind probably feels like there are ten thousand maniacs in it. Trust, you will get used to it; in fact, getting used to it is necessary for your well being. I'm not talking about 'accepting' cancer; never that. But getting used to it and accepting the fact that you HAVE it. This will help get rid of it. God bless.
Dear Joannec, I know your first day was rough but everyday something is learned it really isn't a wasted day. Next time they may give you Benadryl or something else that will help with an allergic reaction. I have many allergies, so I had Benadryl before every chemo treatment. My name is Tammy, I'm 51 and I found out January 2016 that I have stage four Ovarian cancer, one of the deadliest there is but,I'm here today and in remission with more testing next week and I'm pretty sure I'll still be in remission. If not, I've learned to fight! I gave up meat, sugar and dairy as my doctor requested and ate when I wasn't hungry because I knew my body needed the good vitamins to fight my cancer. When you think of all those that Love You and how hurt they'd be if you were gone, it makes the fighting easier to bear. Even some of the worst pain is temporary, even if it's days, you'll get through it. I prayed all the time, for me, for my husband, and for everyone who loves us. I fight, Not just for me, but for my husband who is fighting stage four lung cancer (diagnosed 11 months before me and in pretty bad shape now), for my 4 year old granddaughter, who has no other grandmother, for my recently sober son who has two daughters ( 1 and 4 years old) by two different mothers, for my other son and two stepdaughters who have enough to handle already, for my 6 grandchildren who Love candy at Mom Mom and Pop Pop's house and for my father who lost my mother 18 years ago and I don't think can bare watching his middle daughter die, along with my siblings who looked at me with tears in their eyes, and so many other family and friends who truly love me and would miss me terribly. It's definitely scary and a rollercoaster ride of emotions but I think that's normal. Hope and Faith come and go even when
you know you believe in God, it still hurts. My thoughts about hopes and dreams come and go. The month after my husband retired, he was diagnosed with stage four lung cancer, that was two years ago. The doctor thought he had 24 months if he was lucky but he's still here. I used to think we'd find his cure but now I don't think so, so much. However with new treatments around the corner a lot lately and everyone having different responses to current treatments all hope is not lost. I just am preparing for both now which does mean all my retirement dreams with him could be gone. Now I sometimes think of what I'll do if he's gone because I'm so happy and Thankful that God has saved me and I want to do something meaningful with my life. Besides being with family and friends, I'd like to find a way to help children in need and animals too. I'll definitely start spending time researching where I could be helpful. Other than helping my husband I need to keep my mind busy so I won't go crazy worrying about our future. It is something that changes you forever and adjustments come slowly but not all. Example, I went totally bald after my second chemo treatment, I had long golden blonde hair, at first it was totally devastating. After a few weeks, I was over it and just wanted to survive and have some strength to be able to stay involved in life. I got two different wigs before my hair fell out, wore scarves,( still do, cause my hair is so short and I'm not used to it), found out about self adhesive eyelashes, (they're hard to put on but worth it) and a friends girlfriend did my makeup before my granddaughters birthday party so I could feel as normal as possible. It was 10 days after my eighth chemo, after blood transfusions and platelet transfusions but I would not miss it. I ended up taking my scarf off because it was in August and so very hot. So, there I was bald and having my picture taken because I wanted my granddaughter to remember Always how much I Love her, that I was there and Not giving up. I hope I've helped you in some way. I try to remember, It's not over til it's over, so every day we're here, there's hope and a chance for another day and another and another and another.
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February 11, 2017

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