My Lymphoma Journey Part 1

[Daisy1234]

Hello Everyone:

I just wanted to share a bit of what's going on.  As many of you know, in addition to having severe Sjogrens, I've been recently diagnosed with a Non-Hodgkins MALT lymphoma which is typical of Lymphomas that occur with Sjogrens.

Yesterday I had my 1st of 8 chemo treatments at a cancer clinic.  The chemo treatments will be followed by 18 months of Rituxan only infusions so the whole process will take about 2 years to complete.

The day was long, about 10 hours as they were giving me a very slow drip infusion of Rituxan, 2 Chemo drugs, a Saline IV, a Benadryl IV and 100mg of Prednisone.  They do an extra slow drip for the first infusion so as to be able to gauge how the patient reacts to the cocktail and to be able to react quickly if things go wrong.  Additionally, I was required to take a couple of Tylenol every 4 hours to for fever and headache as well as anti-nausea medication (Ondansetron) and medication to help reduce the change of kidney/bladder damage (Allopurinol).  I will be taking the Ondansetron for a few days and the Allopurinol for 7 days.  As well I also have been given a prescription for Zyloprim which is another anti-nausea medication if I experience alot of nausea after the Ondansetron is finished.

There is space for up to 10 patients at a time in the cancer clinic and there were 4 nurses on duty.  There are 3 beds and the other 7 cubicles are club chairs. They also have a full-time janitor who's sole responsiblity is keeping the cancer clinic clean.  He constantly cleans up, empties garbage cans, picks up anything that hits the floor, and also the bathrooms were kept spotless which was very nice.

My husband came with me, there is a chair for a guest in each cubicle and that was very very helpful, not only for moral support but also to just take care of me whenever I needed something.  He also brought along a cooler filled with bottled water, snacks, chicken wraps, a bit of fruit and of course a small package of chocolate almonds for when my spirit needed a boost and made sure I always had a nice warm blanket on me.   They also had a small tv on a swing arm with cable for each cancer patient.  The hospital provided a small sandwich lunch for the patients who were there during that time.

The nurses at the clinic were very knowledgeable, they all are extremely experienced in the handling and care of cancer patients and my vitals were monitored every 15 minutes for the 1st few hours and then every 1/2 hour for the remainder of the time.

See next post (Part 2)

[Daisy1234]

Part 2...

They also have on staff a Pharmacist who also specializes in the care of cancer patients and she spoke to me for at least 45 minutes about all of the possible side-effects I would be experiencing, she also went over in detail all of my medications for any potential contraindications and provided me with the prescriptions for the other drugs I was to be obtaining after I left the clinic.  Additionally, I spoke to her about the confusion with the Prednisone I had been taking, since I was supposed to be on a prednisone taper and then the cancer treatment would bump me back up to 100mg per day for 5 days each time I had a chemo infusion.  She told me she would take care of it and right away she contacted my Hematologist and got a new prednisone taper program for me which she gave me later that day.  Whew, that was a big relief!

I was one of the lucky ones, I didn't experience the bad reactions that some get to this chemo cocktail.  I do have some minor side-effects today, as both eyes have swollen up, face is a bit puffy, experiencing some nausea/cramping and alot of fatigue, with extra dryness today because of the Benadryl, but that is all small potatoes when compared to going into Anaphylatic shock which is one of the serious reactions that can happen. 

I was told to expect to hit rock bottom between day 7 to day 14 following the chemo infusion and that I should just start to come out of it a few days before they give me the next infusion which will be on August 31st.  My chemo infusions are exactly 21 days apart.

I was told to drink lots of water today and tomorrow to clear the uric acid that would build up in my kidneys as a result of yesterday and oh yes, the chemo makes one very very constipated so that might be a bit of a challenge since I already have IBS-C.  But when one compares that with cancer, again, it puts it into perspective.

Today I was told to rest and just take things as easy as possible which I am doing and watch for any signs of infections, breathlessness or easy bruising (Anemia) which all can appear suddenly after the chemo.  I'm also to take my temperature first thing in the morning and just before I go to bed each day and if it climbs to 100F or more, I'm to call a pager number and speak to either the Clinical Nurse Expert (CNE) at the cancer clinic or the Hematologist and get myself to the ER right away.  If this happens, the CNE will coordinate the visit to the ER and I won't be required to wait but will be put at the head of the line and all treatment will be overseen by my Hematologist.  That was good to hear!

I sincerely hope none of you ever have to go thru cancer treatment, but if this happens to you or one of your loved ones, hopefully this will give you some idea of what to expect.

Daisy

[A66eyroad]

Wow, this is one of the clearest, most well-written chronicles I ever read! You're a really good writer -- thank you for taking the time to share this with us.

I'm impressed with this clinic for having so many caring nurses and for having a pharmacist on staff. Wonderful, too, that the whole place -- especially the bathroom! -- was kept sparkling clean. It sounds like you're in the best of hands.

Ten hours is a very long time. I'm so glad your husband was there with you to keep you tucked in, and that you had some chocolate at the ready! I was awfully glad to read that your prednisone question was cleared up by the nurse with a single phone call. I know that's a big worry off your shoulders.

Please know that my thoughts and prayers are with you, especially my positive thoughts that you'll continue to have minimal reaction to the cocktail. In fact, I'm lifting you up in my thoughts and toasting you right now -- with my water bottle!

[Carebear]

Hi Daisy,

Thank you for such a detailed account of your experience.  I'm glad that you are in such caring, experienced hands...including your husband's. 

Take care, and of course get lots of rest.  I will continue to think positive thoughts.   

[4Kids]

Major love and support going you way. You are so strong. Good luck to you in what I hope is a gentle journey.

[Chickpea]

Hi Daisy

Thank you so much for letting us know how you are - you've been in my thoughts.  You've written such a detailed and useful account of a day in a chemo ward - as you say, let's hope that not too many people need the information but it's good to have it if necessary.

Hope you're resting lots and eating those chocolate almonds!

Thinking of you - Chickpea

[Cheryl]

Daisy,
You sound very positive; I love the way you complimented everything that was done for you!  Stay strong, and keep us posted.
Hugs,
Cheryl

[irish]

Daisy, That was a great description of a very busy day. Boy, sounds like this place has their ducks in a row. I also figured that the pharmacist would address your prednisone qualms and she did. Yeaaaa!

Sounds, well organized and very professional and that is the way it should be. We need to know what is going on in order to cope better. Lack of knowledge if one of the main reasons for a lot of the fear we have as patients.

Glad that you could have your hubby with to cheer you on. Will say some prayers for your continued ability to cope both physically and mentally with this event in your life. Not something any of us want but something that we need to endure and cope with if it occurs. Good luck. Irish

[mebog]

God Bless You Daisy,  I learned a lot from your post.

I'll be praying that you will be confortable through all of this.

HUGS  Mebog

[Kerrikins]

I am thinking about you Daisy, and praying that things go well for you!

[ohiolady]

Daisy,

Thanks so much for sharing a detailed account of your journey.  We are all pulling for you and praying for a good outcome.  I know this is going to be a challenging couple of years for you and I'm hoping we can be a good support system and encourage you along the way.

Sending you an extra big hug.

Anna

[Bucky]

(((Daisy))),

You are such a strong person!  Thank you for sharing the details of your beginning journey with Lymphoma. 

From all the things I have heard about cancer treatment centers (and three of my immediate family members have dealt with cancer) - they all seem to be very, very sterile.  That is a good thing as those with cancer are so susceptible to germs.  The temperature in there is also very cool - I bet the warm blanket felt good.

I'm glad your husband was able to be with you today to help the time go by for you.  Also, he will get a first person birds eye view of what kind of treatments you are getting and hearing what the doctors/nurses are telling you.

I hope during these next two years as you undergo your treatments that you will allow friends and family to "wait on you" and help you.  If they offer help, accept it.  Not only will it help you, but it also helps them as they feel so helpless watching you go through this journey.

You will need to heed the doctors advice and rest between treatments.  I remember my sister telling me by the time she started to feel better, it was time for another treatment and it started all over again.

Sending you a gentle hug and prayers that treatment will go well for you.  We're on this journey with you - if there's anything we can do to help encourage you, please ask.

Hugs,
Bucky

[Meld256]

Daisy,

Thank you for taking time to give such a lot of details about your day.  I really learned a lot from you.  I'm glad it was a good experience for you and your husband could be there.

Sounds like they really "know their stuff" there, as they should. Gives us so much more confidence in our care!    I'll be sending you many hugs and thoughts that you can rest well. As Bucky said, you know we're all with you on this journey you've begun.  We are with you in spirit daily...

Keep us posted and know we care.
Melinda