Background

05/23/13

MCL Info

Filed under: Background — admin @ 09:57:22 pm

LLS created this excellent reference item on MCL, with a great note on treatment - "There has been noteworthy progress in the treatment of
MCL over the last decades":

http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/lymphoma/pdf/mantlecelllymphoma.pdf

Thanks to all of the doctors and nurses researching and trying, for all of the patients undergoing clinical trials, for the caregivers that keep us going, and for the support, thoughts, hopes and prayers of friends and family.

02/02/07

Sedatives for a Colonoscopy

Filed under: Background — admin @ 01:39:57 pm

During my various colonoscopies (4), I've encountered several differnt types of sedatives. Each one had a vastly different effect, and I've been meaning to document them, and my experience with them:
- Fentanyl (100 mcg) and Versed (4mg) IV - "Conscious sedation" - you're awake, and can see what's going on - via the tv monitor that's being fed a signal from the camera in you (gross, yet neat). No pain or discomfort. Seems like an out of body experience, where you can see what's going on, and it's kind of cloudy after, but like I said, no pain.
*I had this for procedure 1 and 4.
- Fentanyl (100 mcg) and Versed (10mg) IV - Note the Versed change from 4 to 10. That extra 6mg's packs a punch! I felt the stuff 'wash over' me, and for about 10 seconds, everything was very weird - but in a good way. I don't remember anything after that.
- Propofol - This was administered by an anesthesiologist, and it was like hitting a light switch, one moment I was awake, the next moment, out, and then back again.

10mg's of Versed seemed the best!

10/30/05

CBC's

Filed under: Background — admin @ 11:48:50 am
Date Note WBC RBC HGB Platelets
Baseline (4.5-11) (4.6-6.2) (13.5-17) (150-450)
2/22/10 CBC's 6.4 4.36 14.6 160
8/25/09 CBC's 6.2 4.56 15.2 161
4/27/07 CBC's 5.6 14.6 183
2/2/07 CBC's 7.3 4.51 14.8 181
10/27/06 CBC's 4.7 15.2 193
4/17/06 CBC's 5.4 14 200
3/30/06 CBC's 4 3.89 12.9 187
3/20/06 CBC's 6 13.7 183
3/9/06 CBC's 5.3 12.8 182
2/22/06 CBC's 4.5 13.4 214
2/15/06 CBC's 3.8 12.3 254
2/6/06 CBC's 4.6 11.1 234
1/30/06 Checkup 2.4 3.11 10.0 124
1/25/06 Transfusion 3.9 2.68 8.58 121
1/23/06 B4+18 3 7.9 112
1/20/06 Transfusion 3.18 2.09 6.64 35.9
1/18/06 B4+12 4.8 2.47 7.8 17
1/11/06 B4+5 7.9 26
1/2/06 B4 Day1 3.4 3.25 10.5 176
12/20/05 A4+8 Hosp 2.6 2.7 8.5 88
12/19/05 A4+7 Hosp 2.0 2.82 8.8 92
12/18/05 A4+6 Hosp Hickman Pulled 2.2 2.08 6.7 104
12/17/05 A4+5 Hosp 2.9 2.28 7.3 136
12/15/05 A4+3 Hosp 1 Day 11
12/12/05 A4 Day4 6.9 2.71 8.7 207
12/11/05 A4 Day3 3.3 2.61 8.3 173
12/10/05 A4 Day2 2.2 2.28 7.4 146
12/9/05 A4 Day1 2.7 2.38 7.8 144
11/28/05 B3+13 13.1 2.72 8.6 43
11/26/05 B3+11 Hosp 8.3 8 19
11/25/05 B3+10 Hosp 3.5 2.61 8.1 19
11/24/05 B3+9 Hosp .7 2.28 7.2 5
11/23/05 B3+8 Hosp .2 2.04 6.7 11
11/22/05 B3+7 Hosp .2 6.8 20
11/18 B3+3 3.9 2.68 8.6 101
11/15 Chemo B3 6.1 2.69 8.7 202
11/14 Chemo B3 6.5 2.84 9.3 218
11/13 Chemo B3 5.7 2.82 9.1 237
11/12 Chemo B3 3.5 2.62 8.5 223
11/11 chemo B3 4.8 2.71 8.7 256
10/30 hosp/fvr 4.6 2.07 6.8 94
10/29 hosp/fvr 3.2 2.21 7.3 116
10/30 hosp/fvr 4.6 2.07 6.8 94
10/29 hosp/fvr 3.2 2.21 7.3 116
10/28 hosp/fvr 2.5 8.5 168
10/25 30.6 8.9 299
10/22 chemo A3 5.9 2.49 7.9 335
10/21 chemo A3 4.6 2.44 7.8 387
10/20 chemo A3 5.3 2.64 8.4 379
10/19 chemo A3 5.4 2.84 9 411
10/11 B2+11 27.9 2.86 9 75
10/9 B2+10 5 2.59 8.3 33
10/8 B2+9 0.6 2.9 7.2 47
10/7 B2+8 0.2 1.95 6.2 10
10/5 5.9
10/4 B2+5 1.6 5.8
9/29 chemo B2 5.2 2.36 7.5 173
9/27 chemo B2 9.3 2.58 8 188
9/26 chemo B2 3.9 2.78 8.6 179
9/19 33 9.4 122
9/7 Chemo A2 7.4 2.85 8.6 497
9/6 Chemo A2 8.7 2.83 8.4 473
9/5 Chemo A2 15.4 3.17 9.5 517
9/4 Chemo A2 9.4 2.9 8.4 440
8/25 B1+6 0.6 52
8/20 B1+1 55.8 3.99 11.9
8/18 Chemo B1 7.2 3.7 11.1 228
8/16 Chemo B1 5.4 3.96 11.8 169
8/12 11.8 4.51 13.4 124
8/2 A1+4 14 13 292
7/29 Chemo A1 7.1 4.48 13.4
7/29 Chemo A1 6.8 4.28 12.9
7/28 Chemo A1 9 4.05 12.4
7/27 Chemo A1 9.3 4.17 12.5
7/26 Chemo A1 8.9 4.4 13.4
7/25 Chemo A1 7 4.53 13.7
7/6/05 6.2 4.41 13.4
6/23/05 7.6 4.46 13.5
6/11/05 12.9 5.27 16
3/15/05 6.9 4.97 15.4

10/20/05

What to expect/Do - for the newbie

Filed under: Background — admin @ 01:13:54 pm

Just got a new roomie that's just starting R-HyperCVAD, and it made me realize I should create a common list of things to do/expect - without having to read through all my entries... These are related to my experiences, and yours may differ.

- Keep a list of all the meds that you're taking - including the dosages - with you at all times. If you have to go to a hospital or a doctor for a fever, etc, they won't know what you're going through, so you'll have to tell them.

- Change your cell phone's screen to be an ICE message (In Case of Emergency). List your doctor, that you're going through chemo, etc.

- Hickman Care (while showering) - major thanks to Linda!!: When you're in the hospital, they make this 'window' to place over your Hickman site to keep it dry while you shower. At home, a much easier solution than making the window is to use Glad Press and Seal, cut to a larger size then your dressing (I pull off a section, and have to trim about 4 inches off the one side) press it to your chest, around the dressing, and then tape over the edges. Takes about 2 mintues tops (probably less), and it's MUCH easier to me than making the window.
- also if you're going to be doing activities that make you perspire (bike riding, running, etc), make sure your doctor/pharmacist sets you up with 2 dressing changes per week. Otherwise it just becomes too loose.

- I felt a bit nauseaus the first day or two after chemo. Don't hold out on taking the anti nausea pills - take them when you start to get the feeling. I never got sick, but by delaying the taking of the pills, I only prolonged a not-so-pleasant-feeling.

- You'll probably start losing your hair (head and facial) about 2 weeks out from your A cycle chemo. My choice was to shave immediately. I've heard you can have discomfort if you don't, and I didn't want to go 'spotty'. My other choice was to have some fun with it - try some new 'dos', take pics, etc. Likewise with any facial hair. I'm a guy and it didn't matter that much, for the ladies, I understand it's more traumatic, but there are usually resources available to you - make sure you talk to your onc or the hospital you're being treated at.
- oh, it doesn't completely stop growing, you'll still have to shave once in a while - which is annoying - either leave all the way, or come back!

- Keep up with the mouth care - especially on the 'B' cycle. Do the mouth rinses, etc. Sores can set in, and they're annoying - prevent them.

- To date, the administration of either cycle has not been that bad for me. Meaning, in the hospital, when getting treatment, I generally feel quite fine. (The worst was hickups during my first 'B' cycle.) The nadir (7-10 days after chemo ends), is when you have to watch. The 'A' cycle has been fine so far, the 'B' cycle is the one to watch out for. It causes your counts to drop more - and I've heard this from others. Be ready for neutropenic fever, which simply involves a trip to the ER, and possible a stay for a few days. If you know about it up front, expect it, and plan for it - it's really not a bid deal. Don't be afraid of it, they know what to do.

- DON'T BE AFRAID OF A BLOOD TRANSFUSION. I got 6 pints over a week, and 2 units of platelets. It may be part of your treatment. If your body needs it, you'll get it, and your counts will go back up. No need to be concerned - they test the heck out of the blood, irradiate it, etc. etc....

- I have been able to work while in the hospital (I work in computers so I do lot's of e-mail, computer based work, conf calls, etc - and I can do all that remotely). I've been able to go back to the office the day after chemo - and feel fine. Maybe a little out of it, but depending on your job, somehow all the work activity doesn't allow you to feel out of it - which is a good thing! (Works for me.) If you feel tired, you need to cut back.

- Low HGB (hemoglobin) counts are the thing that affected me most - from a physical standpoint. I noticed it when walking across NYC for meetings, or when climbing stairs in Penn station or subways. Watch your HGB counts and your activity. When excercising, use a heart monitor, as since you have less oxygen in your blood, your heart has to work harder to supply oxygen to your muscles. Meaning, if you work out as hard as you did before, your heart may be working WAY too hard. Polar sells some great ones cheap. You can get them at Dicks Sporting Goods (dickssportinggood.com) or Performance Bicycle (performancebike.com) - no affiliation to either....

- Colonoscopies are not that bad! You get sedated before, and the next thing you know you're in the recovery room. The worst part is not eating the day prior, and having to take something that will 'clean you out'. A prostate exam is far worse (IMHO).

I'll add to this as things come to me - or please send me comments if there are things I'm missing.

10/14/05

My Treatment Protocol

Filed under: Background — admin @ 07:09:49 am

R-Hyper CVAD
I'm taking R-Hyper CVAD, which will be administered in the hospital for 4-5 days, every 3 weeks, for 8 cycles.

R-Hyper CVAD (R-HCVAD/-Mtx AraC)

Cycle A Breaks down for me as:
1) Mesna IV all the time (incl 5 hours after Cytoxin) - for bladder protection
2) Decadron (Dexamethasone??) 40mg (IV) - daily - cortiosteroid
3) Cytoxin (Cyclophosphamide) (IV) at 10pm(started at night)/10am for 3 hours, for 6 cycles (s/b Mon-Tues, Tues-Wed, Wed-Thurs) - Chemo drug
4) Sodium Chloride with Potassium whenever the Cytoxin isn't running, They turn it off when it is - for hydration/electrolytes.
5) Rituxin on Day 4, after the Cytoxin.
6) Vincristine (??) s/b on Thursday (12 hours after last Cytoxin) - Chemo drug.
7) Adriamycine (??) s/b on Thursday (12 hours after last Cytoxin) - Cheomo drug.

Antibiotics - given daily
1) Diflucan (Oral) - Anti Fungal
2) Cipro (Oral) - Antibiotic
3) Acyclovir - Anti Viral
4) Allupurinol - Gout Prevention (when the cancer cells break down quickly, it can lead to gout if you don't assist the system)

Other
1) Kytril (Oral) - Anti nausea - given once daily during Chemo in the hospital

At Home
1) Neupogen - 1 shot daily (increase WBC count) Days 1-10 following chemo (through the nadir - low point)
2) Diflucan (Oral) - Anti Fungal
3) Cipro (Oral) - Antibiotic
4) Acyclovir - Anti Viral
5) Take temp 4x daily - anything over 100.5 - go to the hospital for neutropenic fever (take tylenol)

Cycle B for me is:
* Rituxan Day 1
* Methotrexate Day 2 over 2 hours - CHEMO
* Methotrexate Day 2 immediately after the previous Methotrexate over 24 hours - CHEMO
* Methylprednisolone Day 2 - Day 4 - Steroid
* Cytarabine (Ara-C) Day 3 - Day 4 - every 12 hours for 4 doses – CHEMO
* Eye Drops to prevent Pink Eye - a side effect f Ara-C - every 6 hours.
* Leucovorin Thurs 8/18 (orally) – moderates the Methotrexate levels, which need to be low to let me be released.

Drug overviews:

NAME: methotrexateBRAND NAMES: Rheumatrex, Trexall
DRUG CLASS AND MECHANISM: Methotrexate is classified as an antimetabolite drug, which means it is capable of blocking the metabolism of cells. As a result of this effect, it has been found helpful in treating certain diseases associated with abnormally rapid cell growth, such as cancer of the breast and psoriasis. Recently, methotrexate has been shown to be effective in inducing miscarriage, for example in patients with ectopic pregnancy. This effect of methotrexate is attributed to its action of killing the rapidly growing cells of the placenta. It has also been found very helpful in treating rheumatoid arthritis, although its mechanism of action in this illness is not known. It seems to work, in part by altering aspects of immune function which may play a role in causing rheumatoid arthritis.

PRESCRIPTION: yes

GENERIC AVAILABLE: yes

PREPARATIONS: Injectable: 25mg/ml; Tablet: 2.5mg (Rheumatrex), and 5, 7.5, 10 and 15 mg (Trexall).

STORAGE: Store between 59 and 77degrees F in a sealed container, avoid light.

PRESCRIBED FOR: Methotrexate is used for cancer treatment generally in higher doses than for other uses, and is often administered intravenously or intramuscularly. Methotrexate is used to treat psoriasis, an inflammatory skin disease, as well as the arthritis that occurs in 10 percent of these patients (psoriatic arthritis). It is also used to treat active rheumatoid arthritis in adults and children. It is also used to treat other rheumatic diseases, including polymyositis and systemic lupus erythematosus. Methotrexate has been used to induce miscarriage in patients with ectopic pregnancy.

DOSING: May be taken with or without food. For rheumatoid arthritis and psoriasis, the dose of methotrexate is given WEEKLY, whether by injection or orally. For psoriasis, the weekly dose is often divided into three doses given at 12 hour intervals each week. This has been shown to be more effective, as it relates to the natural growth cycling of the skin.

DRUG INTERACTIONS: Because methotrexate can cause serious liver disease, patients with alcoholism or liver disease should not receive it. Patients should curtail alcohol consumption while taking methotrexate. Methotrexate can suppress the body's immunity. Therefore, any symptoms of infection should be reported to the doctor. Patients with underlying immune deficiency diseases should not receive methotrexate. A dry, non-productive cough can be a result of a rare lung toxicity. Methotrexate can impair fertility, decrease sperm count and cause menstrual dysfunction. Safety and effectiveness has not been established in children.

PREGNANCY: Methotrexate should not be used in pregnancy, as it can be toxic to the embryo and can cause fetal defects and spontaneous abortion (miscarriage). It should be discontinued prior to conception if used in either partner. Male patients should stop taking methotrexate at least 3 months prior to a planned conception and females should discontinue use for at least one ovulatory cycle before conception.

SIDE EFFECTS: Methotrexate can be well tolerated, but also can cause severe toxicity which is usually related to the dose taken. The most frequent reactions include mouth sores, stomach upset, and low white blood counts. Methotrexate can cause severe toxicity of the liver and bone marrow, which require regular monitoring with blood testing. It can cause headache and drowsiness, which may resolve if the dose is lowered. Methotrexate can cause itching, skin rash, dizziness, and hair loss. A dry, non-productive cough can be a result of a rare lung toxicity.

GENERIC NAME: CYTARABINE - INJECTION (sye-TAIR-uh-bean)BRAND NAME(S): Cytosar-U, Tarabine PFS
Warning | Medication Uses | How To Use | Side Effects | Precautions | Drug Interactions | Overdose | Notes | Missed Dose | Storage | Medical Alert

WARNING: This medication will be given where you can be closely monitored by your doctor because serious (rarely fatal) blood disorders (e.g., anemia, bone marrow suppression) have been caused by this medication. Liver problems may also develop. Notify your doctor immediately if you develop fever, unusual fatigue, nausea, vomiting, diarrhea, persistent sore throat, easy bruising or bleeding, abdominal or stomach pain, dark urine, yellowing eyes or skin, or mouth sores.

USES: Cytarabine is one of a large group of drugs known as "antineoplastics"; these drugs are also known as cancer drugs, chemotherapy, or "chemo". They are used in the treatment of various cancers to slow or stop the growth of cancer cells. A combination of different types of cancer drugs will often be used to achieve better results and minimize side effects.

HOW TO USE: This is a potent medication. Use it exactly as prescribed. Unless your doctor instructs you otherwise, drink plenty of fluids while using this medication. This helps your kidneys to remove the drug from your body and avoid some of the side effects. Do not stop using this medication, even if you feel nauseated or experience vomiting.

SIDE EFFECTS: Nausea, vomiting, loss of appetite, headache, itching, freckling, diarrhea, dizziness are common side effects. Using the drug on an empty stomach may help to relieve vomiting. Changes in diet such as eating several small meals or limited activity may help lessen some of these effects. In some cases, drug therapy may be necessary to prevent or relieve nausea and vomiting. Temporary hair loss is another common side effect. Normal hair growth should return after treatment has ended. Contact your doctor without delay if you experience any of the following symptoms: fever, chills, painful or difficult urination, chest pain, heartburn, difficulty swallowing, easy bruising or bleeding, black or tarry stools, blood in urine or stools, pinpoint red spots on the skin, joint/back/side pain, swollen feet or lower legs, sores in the mouth or on the lips, yellowing of the eyes or skin, dark urine, shortness of breath, bone or muscle pain, severe stomach pain. If you notice other effects not listed above, contact your doctor or pharmacist.

PRECAUTIONS: Tell your doctor your medical history, especially of: kidney or liver problems, gout, infections, allergies (especially drug allergies). Contraceptive (birth control) measures are recommended for use in men and women while using this medication. A preservative (benzyl alcohol) which may be found in this product or in the liquid used to mix this product (diluent) can infrequently cause serious problems (sometimes death), if given in large amounts (more than 100 mg/kg daily) to an infant during the first months of life (neonatal period). The risk is also greater with low birth weight infants. Symptoms include sudden gasping, low blood pressure, or a very slow heartbeat. Report these symptoms to the doctor immediately should they occur. If possible, a preservative-free product should be used when treating neonates. Cytarabine is not recommended for use during pregnancy. Consult your doctor for details. It is not known if this medication passes into breast milk. Consult your doctor before breast-feeding.

DRUG INTERACTIONS: Tell your doctor of all prescription and nonprescription drugs you may use, especially of: medicines used for gout. Do not start or stop any medicine without doctor or pharmacist approval.

OVERDOSE: If overdose is suspected, contact your local poison control center or emergency room immediately. US residents can call the US national poison hotline at 1-800-222-1222. Canadian residents should call their local poison control center directly.

NOTES: This medication can lower your body's ability to fight an infection. Notify your doctor if you develop any signs of an infection such as fever, sore throat, rash or chills. Avoid touching your eyes or inside your nose without first washing your hands. Use caution with sharp objects like safety razors or nail cutters and avoid activities such as contact sports in order to lower the chance of getting cut, bruised or injured. Do not have immunizations/vaccinations without consent of your doctor, and avoid contact with people who have recently received oral polio vaccine. Regular doctor visits are important. Frequent blood tests will be done to monitor therapy.

08/06/05

What is MCL?

Filed under: Background — admin @ 11:20:12 pm

This is from:
http://www.cancerbacup.org.uk/Cancertype/Lymphomanon-Hodgkins/TypesofNHL/Mantlecell
It's a great high level site for MCL

What is mantle cell lymphoma?

Non-Hodgkin's lymphoma is a cancer of the lymphatic system. The lymphatic system is part of the body's immune system and helps us fight infection. It is a complex system made up of organs, such as the bone marrow, the thymus, and the spleen, and the lymph nodes (or lymph glands). These are connected by a network of tiny lymphatic vessels. Lymph nodes are found all over the body.

Lymph is a colourless fluid. It circulates through the lymphatic system. Lymph contains cells called lymphocytes. Lymphocytes are a type of white blood cell and are an essential part of the body's defence against infection and disease.

There are two main types of lymphocytes: B-cells and T-cells. Most lymphocytes start growing in the bone marrow. The B-cells continue to develop in the bone marrow. The T-cells go from the bone marrow to the thymus gland (behind the breast bone) and mature there. When they are mature, both B-cells and T-cells help us to fight infections.

There are more than 20 different types of non-Hodgkin's lymphoma. Mantle cell is an uncommon type and makes up about 5% of all cases of non-Hodgkin's lymphomas. It is a cancer of the B-lymphocytes. Mantle cell lymphoma can occur at any time from the late 30s to old age. It is three times more common in men than in women.

Causes of mantle cell lymphoma
The causes of mantle cell lymphoma are not known. Mantle cell lymphoma, like other cancers, is not infectious and cannot be passed on to other people.

Signs and symptoms
The first sign of the condition is often a painless swelling in the neck, armpit or groin, caused by enlarged lymph nodes. Sometimes more than one group of nodes is affected. The lymphoma may spread to affect various organs in the body, such as the bone marrow, liver or spleen. About one in four people with mantle cell lymphoma will also have the disease in the stomach or bowel. Some people have loss of appetite and tiredness.

Other symptoms may include night sweats, unexplained high temperatures and weight loss. These are described as B symptoms.

How it is diagnosed
A diagnosis is made by removing an enlarged lymph node, or part of it, and examining the cells under the microscope. This is known as a biopsy. It is a very small operation and may be done under local or general anaesthetic. Biopsies may also be taken from other body tissues.

Additional tests, including blood tests, x-rays, scans and bone marrow samples, are then used to get more information about the type of lymphoma and how far it has spread in the body. This information is used to help decide which treatment is most appropriate.

Staging
The stage of non-Hodgkin's lymphoma indicates how many groups of lymph nodes are affected, where they are in the body and whether other organs such as the bone marrow or liver are involved.

Stage 1
The lymphoma is only in one group of lymph nodes in one particular area of the body.

Stage 2
More than one group of lymph nodes is affected, but all the affected nodes are contained within either the upper half or lower half of the body. The upper half of the body is above the sheet of muscle underneath the lungs (the diaphragm) and the lower half is below the diaphragm.

Stage 3
Lymphoma is present in lymph nodes in both the upper and lower parts of the body (i.e. in lymph nodes both above and below the diaphragm. Your spleen is considered as a lymph node in this staging system.

Stage 4
The lymphoma has spread beyond lymph nodes to other lymphatic organs for example, to sites such as the bone marrow, liver or lungs.
The stage usually includes the letter A or B, which describes whether any B symptoms are present or not (e.g. stage 2B ). Sometimes the lymphoma can start in areas outside the lymph nodes, and this is represented by the letter E, which stands for extranodal (e.g. stage 3AE).

Grading
For practical purposes non-Hodgkin's lymphomas are also divided into one of two groups: low- and high-grade. Low-grade lymphomas are usually slow-growing and high-grade lymphomas tend to grow more quickly.

Mantle cell lymphoma has the appearance of low-grade lymphoma, but may behave in a more aggressive way like a faster-growing lymphoma.

Treatment
Chemotherapy The most commonly used treatment for mantle cell lymphoma is chemotherapy. Usually, quite an intensive form of chemotherapy is needed, with a combination of different drugs being given by injections or drips into a vein. This will normally involve some time in hospital.

High-dose treatment with stem cell support High-dose chemotherapy with bone marrow or stem cell infusions has been used for some patients. This type of treatment involves very intensive chemotherapy and sometimes radiotherapy.

As the side effects can be severe, some types of high-dose treatment are not given to people over the age of 45, while others can be given to people of up to 65 years who are fit enough. This is because the intensity of the treatment increases the risks of serious side effects for people over this age.

Radiotherapy Radiotherapy may be used when the lymphoma cells are contained in one or two areas of lymph nodes in the same part of the body (stage 1 or 2). It may also be given in addition to chemotherapy.

Steroid therapy
Steroids are drugs which are often given with chemotherapy to help treat lymphomas. They also help you to feel better and can reduce feelings of sickness.

Monoclonal antibody therapy Another treatment that may be used is a monoclonal antibody called rituximab. Monoclonal antibodies are drugs that recognise, target and stick to particular proteins on the surface of cancer cells.

Interferon
Interferon is a protein that occurs naturally in the body. It is sometimes used to boost the body's own immune system to control the lymphoma. Interferon is given as an injection just under the skin (subcutaneously).

Clinical Trials
New treatments for mantle cell lymphoma are being researched all the time, and you might be invited by your doctor to take part in a clinical trial to compare a new treatment against the best available standard treatment. Your doctor must discuss the treatment with you and have your informed consent before entering you into any clinical trial.

07/24/05

Background

Filed under: Background — admin @ 10:46:23 pm

I was diagnosed with Mantle Cell Lymphoma (MCL) on 6/14/05, after biopsy of a tonsil I had removed. There was no other evidence of MCL that I could detect.

Further tests (CT, PET, Bone Marrow, Colonscopy, Endoscopy, and blood work) showed that there was evidence of MCL in my bone marrow, colon, various lymph nodes, spleen (enlarged), etc - basically, the typical MCL story.

We debated two treatments:
(1) Memorial Sloan Kettering Cancer Center (MSKCC) - RCHOP, followed by RICE, followed by a Stem Cell Transplant, followed by Rituxan.
(2) Hackensack University Medical (HUMed/MD Anderson type protocol) - R-Hyper CVAD.

Both treatments sound promising, and both doctors were excellent. MSKCC has an excellent reputation in cancer, and HUMed has an excellent reputation as a hospital, growing as a cancer center (we believe the recent addition of Dr. Goy as the head of Lymphoma will be key).

We decided on R-Hyper CVAD due to it's high response rate. Additionally, I'm young (38), and expecting that to play in my favor in dealing with the toxicity of R-Hyper CVAD.

I'm beginning R-Hyper CVAD on 7/25/05. 6 Cycles expected. No stem cell transplant if the initial results are positive.

This blog is intended to serve 3 purposes:
1) To allow me to track my experiences to I can know what to expect for future treatments, and monitor my progress
2) To allow me to share what's going on with family and friends
3) To allow others to see what I'm experiencing, so they may have some insight as to what to expect if they go down this line of treatment. Understanding of course that chemo is very personal and everyone handles it differently, but I wanted to have some barometer as to what to expect, and this should hopefully allow others that benefit.

Additional comments on my background:
- I was 38 when diagnosed
- I was in good physical condition
- I was on the Atkins diet from 4/03-11/03 'hard core', dropping about 55 lbs. - coupled with excercise. (The Atkins diet I did involved vegetables, chicken, fish, and some meat - it did NOT involve bacon double cheeseburgers for breakfast, lunch, and dinner)
- I'm an active cyclist. In season we'd ride 32 miles one night a week, and I'd be on a trainer 4 additional days a week for at least half an hour and up to an hour. We'd also do some 50 mile 'events'.
- I'd had a colonoscopy in 2000 (as my father is a colon cancer survivor), and I wanted to begin early detection (I was 33 at the time). 2 non-cancerous polyps were found and removed.
- The swollen tonsil was the only way this was detected.
- I've never had any other significant medical events. This was the first time I'd ever stayed overnight at a hospital.

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