Returning Home After Your Autologous Stem Cell Transplant

This information will help you prepare to return home after your autologous stem cell transplant.

Before you return home, it’s important that you and your caregiver prepare for this transition. You will still need to follow precautions to stay healthy and to keep from getting an infection.

As you read this information, write down your questions. This will help remind you to ask them the next time you see your transplant team.

The time frames given here are general guidelines and may vary. Your transplant team may give you a more exact time frame.

Before Going Home

It’s important for you to take part in planning your care at home. Your transplant team will work with you before you go home to make plans for your follow-up care.

MedicAlert® jewelry

Before you leave the hospital, you will need to order a MedicAlert bracelet or necklace. Your transplant team will give you an order form and help you fill it out. Your bracelet or necklace should be engraved with the statements “Autologous stem cell transplant” and “Irradiated cellular blood components.” This will let paramedics or staff in any hospital know what to do if you’re in an accident and can’t tell them yourself.

Discuss with your transplant team whether you’ll need CMV-safe blood components after your transplant. If so, you will also need to have the statement “CMV-safe blood components only” engraved into your MedicAlert bracelet or necklace.

For more information on MedicAlert, go to: www.medicalert.org.

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Going Home

You may be very happy and feel ready to go home. However, it’s also normal to have some worries and concerns as your discharge date gets closer. At home, you and your family will need to manage your care. Feeling confident and comfortable doing this is a process that takes time. You can meet with your social worker during your follow-up appointments. They can help you get the services you need and can give you emotional support.

When you go home, you’ll need to adjust to living with your family again. You may find that the precautions you must take in the months ahead add some stress to your life. Patients have told us that the key to managing this new stress is to remain as calm and confident as you can. Regaining a sense of balance and comfort will come with time.

You won’t feel the same way you did before your illness. You may feel tired and weak. Your appetite may not be what it once was. You may have changes in your senses of taste and smell. It may take time for you to regain your strength and to be able to take part in the activities you enjoyed before your transplant.

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Preventing Infection

It usually takes 3 to 12 months for your immune system to recover from your transplant. The first year after transplant is like your first year of life as a newborn baby. During this time, you’re at risk for infection.

Your transplant team will be checking your blood cell counts to see how well your immune system is working. Depending on your blood cell counts, they may make changes or additions to the guidelines below.

Here are a few general tips to keep from getting an infection:

  • Wash your hands often with antibacterial soap and water or an alcohol-based hand sanitizer.
  • Stay away from others who are sick or have recently been sick.
  • Wear a mask and gloves while in public or if you may be near strangers, if your transplant team asks you to.

The following things can be a sign of infection. Call your doctor if you have:

  • A temperature of 100.4° F (38.0° C) or higher. You don’t have to take your temperature daily. However, check it if you don’t feel well.
  • Flushed (red, warm-feeling) skin, sweating, or shaking chills.
  • Coughing, sneezing, runny nose, shortness of breath, or chest discomfort.
  • Any redness, swelling, or pain in your throat, eyes, ears, skin, joints, or abdomen.
  • Blurred vision or other changes in your ability to see clearly.
  • Frequent urination, a burning feeling while you urinate, or both.
  • If you still have a central venous catheter (CVC): difficulty flushing it, or chills while or just after flushing it.
  • Irritation in your rectum, including burning and pain.
  • A rash.
  • Small blisters, similar to cold sores, around your mouth or on any other part of your body.

You can catch viruses more easily until your immune system is back to normal. A common example is the virus that causes chicken pox and shingles. If you’re exposed to either of these illnesses, call your transplant doctor or nurse immediately. You will need to come in so they can see whether you need treatment.

It’s also possible for viruses that you’ve had in the past to reactivate. For example, the virus that causes chicken pox and shingles can reactivate if you had chicken pox as a child. This often starts as pain in the skin with pimples or fluid-filled blisters. If you develop blisters, they can be tiny or as large as a pencil eraser. The blisters may be painful, itch, or burn. If you have any of these symptoms, call your doctor or nurse immediately so you can be treated.

Once your immune system has recovered, you will begin getting your childhood vaccines. This usually starts about 1 year after transplant; however, your transplant team will determine when the timing is right for you.

There are certain things you can do to lower your chance of getting an infection. Below, we give some guidelines for you to follow. Your transplant team may give you more instructions or changes to the guidelines below. Always follow your transplant team’s instructions.

Personal hygiene

While you’re recovering from your transplant, keeping yourself clean is very important and can help prevent infection. Follow the guidelines below.

  • Shower or bathe daily. Use a mild soap such as Dove® or Caress®. Don’t use Ivory® or a deodorant soap because they can dry out your skin. Be sure to wash your underarms and groin. Use a washcloth and towel that are only for your personal use.
    • If your skin is dry, don’t use very hot water. Apply baby oil or a skin moisturizer such as Eucerin® or Cerave®. Put it on after you bathe, while your skin is still damp. Gently pat your skin dry with your towel. Don’t use lotions containing alcohol. They will increase dryness.
  • Limit your time in direct sunlight. Your skin will be more sensitive and may burn more easily after your transplant. The medications you’re taking may add to this. Whenever you’re in the sun, protect your skin with a sunblock that has an SPF of at least 30. Reapply it often. If you will be in direct sunlight for 20 minutes or longer, cover your skin with cotton clothing and a protective hat. Being in the sun for a long time may also reactivate cold sores (herpes simplex virus).
  • You can wear contact lenses, but be sure that they’re cleaned well before you put them in. Don’t reuse cleaning solution. Be sure to throw away cleaning solutions when they have expired.
  • You can wear makeup, but buy all new products after your transplant. Don’t get a manicure or pedicure in a nail salon while your immune system is still recovering. You can do this at home with your own equipment.
  • If you still have a CVC, don’t allow it to soak in water while you bathe. Read our resource Caring for Your Central Venous Catheter (CVC) for more information.
  • Don’t get body piercings or tattoos after your transplant. These increase your risk of hepatitis and other infections.

Hair usually starts to grow back about 3 months after the transplant. It’s possible that your hair may grow back with a different texture. Although it’s rare, hair loss can happen months or years after the transplant.

New nails will grow and replace your old nails. This will happen gradually over 3 to 4 months after your transplant.

Mouth care

You can brush your teeth with an ultrasoft toothbrush if:

  • Your absolute neutrophil count (ANC) is higher than 500 (sometimes called 0.5).
  • Your platelet count is 20,000 (sometimes called 20) or higher.

Ask your doctor or dentist when you can floss and brush your teeth with a regular toothbrush.

If you wear dentures, keep them clean to keep from getting an infection. Soak them every day in any type of denture cleaner. Use the directions on the product. Then, rinse them thoroughly with tap water. Your dentures may need refitting after your transplant.

If any of your medications are mouth rinses, take out your dentures before rinsing or swishing the medication. This will help the medications work better and will keep your mouth from getting infected again. Tell your doctor or nurse if you have pain or discomfort in your mouth.

Dryness of the mouth is another symptom you may have for 3 to 4 months or longer after your transplant. Don’t use commercial, alcohol-based mouthwashes or hydrogen peroxide. They will dry and irritate your mouth. Instead, use a mild salt water rinse. Make it by mixing together:

  • ½ teaspoon of salt
  • ½ teaspoon of baking soda
  • 8 ounces of water

Your dentist may prescribe other rinses. Sucking on sugarless candy or lozenges may also be helpful.

Your salivary glands may not be as good at washing bacteria from your mouth after your transplant. This increases your risk of cavities. Use a toothpaste with fluoride. You can also use a mouthwash with fluoride once your mouth has fully recovered and is no longer very dry. Swish the mouthwash around in your mouth for at least 1 minute, then spit it out; don’t rinse.

Your home environment

Keep your home as free of dirt and dust as possible. However, don’t go to extremes. Don’t repaint your walls or put down new carpets. In fact, you shouldn’t be around any renovations or construction until your transplant team approves. This includes those in process and those done within the past 3 months.

Stay out of any musty area where mold may grow, such as a damp basement. You can use an air filtration system in your home, but it isn’t necessary.

Don’t use a humidifier. Bacteria and mold grow easily in it. A pan of water placed near a heat source may help in the winter. If you do this, change the water every day.

In general, try not to do any chores like dusting or vacuuming for the first 3 months after your transplant. Depending on your energy level, it’s fine for you to cook, wash dishes, or iron. Your bathroom should be kept very clean (especially the tub and toilet). Make sure it’s cleaned with a disinfectant regularly.

Wash your eating utensils and linens carefully. They don’t need to be washed separately from the rest of your household. Thoroughly wash all forks, spoons, and knives with hot water and dishwashing detergent, or use the dishwasher. Wash towels twice a week and bed linens once a week. Use only your own towels and washcloths, not those of your family members.

 

Household plants can stay in your home. However, for the first few months after your transplant:

  • Don’t touch the soil from household plants unless you wear gloves and a mask.
  • Don’t touch the water in a vase of flowers. Someone else should change the water in the vases daily.

Pets

Animals can carry diseases. They may put you at greater risk for infection while your immune system is recovering.

You can have a pet in your home and touch it, but it’s best that you don’t have close physical contact. Don’t touch the animal’s saliva or feces. Be sure to protect yourself from bites or scratches.

Don’t handle or care for birds, lizards, snakes, turtles, hamsters, or other rodents while you’re recovering. If you have an aquarium and you must clean it yourself, protect yourself by wearing gloves. If you have a cat or dog at home, follow the additional guidelines below until your doctor gives you other instructions.

  • Be sure that your pet is up-to-date with immunizations and booster shots.
  • Have your veterinarian check your pet’s stool yearly for parasites.
  • If you have a cat, get it tested each year for feline leukemia and toxoplasmosis.
  • Have your pet treated for fleas. If your pet walks through wooded areas, have it screened for ticks every day during tick season (May to November).
  • Don’t clean cat litter boxes or clean up after your dog. Have someone else do these things for you.
  • Keep your pets indoors or on your own property. This is to help keep them from picking up diseases from other animals.
  • Don’t allow pets in your bed. If you plan to get a pet after your transplant, it’s best that you select a healthy dog or cat that’s more than 1 year old. Have it spayed or neutered.

Outside of your home, avoid close contact with animals in a farm or a petting zoo.

Family and visitors

You can have close physical contact with those in your immediate family. However, don’t have close contact with someone who has a cold or any signs of being sick. Wear a mask if you must be in the same room with someone who’s sick. Your family members and close friends should get a yearly flu shot.

You can have visitors, but limit them to small groups. Don’t visit with anyone who has:

  • A cold.
  • Chicken pox.
  • Recently been exposed to chicken pox.
  • Recently been exposed to the herpes simplex virus (the virus that causes cold sores and genital sores).
  • Recently been exposed to shingles.
  • Recently been exposed to any other type of virus or infection.
  • Recently received a vaccine with a live virus, such as varicella (the chicken pox virus). There are very few of these, but if someone in your household needs one, tell their doctor that you’re immune suppressed and live in the same household.

Call your doctor immediately if you or any other family member is exposed to chicken pox, shingles, measles, or German measles (rubella).

Outside your home

Take regular walks outside, but avoid dirty areas and construction sites. Walking is an excellent way to regain your strength and endurance. However, during the first few months after your transplant, avoid the following places when they’re crowded:

  • Supermarkets
  • Shopping malls
  • Movie theaters
  • Schools
  • Restaurants
  • Public transportation
  • Places of worship (churches, synagogues, mosques)

You can go to these places at off-peak hours, when there are fewer people.

Avoid taking public transportation for at least 3 months after your transplant, except for the Hope Lodge shuttle to and from your clinic appointments. Wear a mask and gloves while on the Hope Lodge shuttle.

You can swim in the ocean after you regain your strength and are more active. Pay attention to alerts from the local health department. You can also swim in a private pool that isn’t crowded. Make sure that the pool is chlorinated. You can’t swim in lakes, rivers, or public or crowded pools until your immune system has recovered. Don’t swim if your CVC is still in place.

Your doctor will tell you when some or all of these restrictions can be lifted.

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Bleeding

Platelets are blood cells that help form clots and control bleeding. When your platelet count is low, you’re at risk for bleeding. You may be discharged with a low platelet count. It can take weeks or months for your body to produce normal numbers of platelets. You may need to have platelet transfusions.

Signs of a low platelet count include changes in the skin, bleeding, or both. Skin changes may include a lot of bruising or petechiae (pe-tea-key-eye). These are tiny, purplish-red spots on the skin that don’t disappear when you press them. You may see them on your lower legs or the insides of your ankles after you’re discharged. Other symptoms of a low platelet count may include bleeding from your gums or nose.

If you’ve gone home with any of these symptoms and they increase in amount or frequency, call your doctor. If you haven’t had any of these symptoms and they suddenly appear, call your doctor. It may mean that your platelet count has changed.

If you have an injury that causes bleeding, don’t panic. Remain calm and follow the guidelines below for the type of injury:

  • If you cut yourself, put a clean, dry gauze pad, towel, or cloth over the cut and press it firmly. Keep pressing until the bleeding stops. If the bleeding continues, elevate the wound. For example, raise your arm or prop up your feet. Apply ice to the wound and call your doctor.
  • If you have a nose bleed, sit up and lean forward slightly. Don’t tilt your head back. Squeeze the bridge of your nose firmly between your thumb and forefinger for at least 10 minutes without letting go. If the bleeding doesn’t stop, continue to squeeze your nose. Apply a small bag of ice to the bridge of your nose until the bleeding stops. If the bleeding continues longer than 30 minutes, call your doctor.

If your platelet count is below 50,000 (50), follow the guidelines below:

  • Use an electric razor when shaving.
  • Use a soft-bristle toothbrush or an oral irrigator such as a WaterPic® to keep your gums from bleeding. Don’t use dental floss.
  • Don’t take aspirin, products that have aspirin, and nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil®) or naproxen (Aleve®). For more information, see the section titled “Common Medications to Avoid.”
  • You can blow your nose, but don’t blow it forcefully.
  • If you’re constipated, call your doctor. You may need more fiber in your diet or a stool softener.
  • Avoid activities or sports that can cause injury. If you have any questions or concerns about this, discuss it with your doctor.
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Resuming Your Activities

Daily activities

The time it takes to recover after a transplant varies. It usually takes about 3 months, but it’s also normal to take more or less time. The time after your transplant is a time of cell recovery and growth. The cells in your mouth, stomach, intestine, hair, and muscles will all regrow. This requires calories and energy. You may feel more tired than you expected. Remember, this fatigue and weakness is normal. Each week, you should feel stronger.

Around the third month after your transplant, your hair will start growing more quickly. You may feel well enough to start resuming your usual level of activity. From this point on, you will probably feel better and better. For most people, however, the first 2 to 3 months to 1 year after transplant remain a time of recovery.

Exercise

It will probably take time for you to regain your strength. It may be helpful to follow a regular exercise plan.

When you begin to exercise, start with easy exercises such as walking. Your physical therapist can help you decide what type of exercise is right for you. As you feel ready, ask your doctor how to increase your exercise. Don’t play contact sports or ski until your platelet count is over 100,000 (100). Don’t swim if your CVC is still in place.

Hobbies

Some hobbies like woodworking, painting, and model building use products that can be toxic. Always work in a room with plenty of fresh air. Keep the windows open. Use nontoxic paints and glue. If you have questions or concerns about resuming any of your hobbies, ask your doctor.

Returning to school or work

The earliest you can return to school or work is 2 to 4 months from the time of your transplant. You may feel ready to return right away, or you may be worried about returning after being away for so long. It may help to begin slowly. For example, start with a schedule of half days or 3 days a week. Most patients tell us that thinking about returning is almost harder than the actual event.

Making the transition back to your usual lifestyle can be hard. It may take time to get used to changes in the way you look. Hair loss, for example, is very hard for many people. Or, you may have trouble concentrating or maintaining your attention span. You may not be able to keep up your former pace. Your transplant team is here to talk with you about going back to school or work. You can speak to a social worker, nurse, psychiatrist, or your doctor. We can work with you to find ways to ease your transition.

Traveling

For the first 3 months after your transplant, avoid traveling outside of the greater New York City area.

If you plan to travel by plane, speak with your transplant team. You must have a high enough platelet count to safely travel by plane.

If you plan to travel out of the country during the first 2 years after your transplant, talk with your transplant team. They may recommend that you see an expert in travel medicine to reduce your risk of infection while abroad.

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Sexual Health

Before you go home, ask your doctor about resuming sexual activity. It’s important for you and your partner to have answers to your questions. If new questions come up, you can discuss them during your follow-up visits.

Protecting yourself from infection or bleeding during sex

Until your doctor tells you that your blood counts and immune system have recovered, follow these precautions:

  • While your platelet count is under 50,000 (50), don’t have sex that involves penetration or contact with mucous membranes.
    • This includes vaginal, oral, and anal sex or inserting fingers, vibrators, or other sex toys into your vagina or anus.
  • Use latex condoms each time you have vaginal, oral, or anal sex. If you’re allergic to latex, talk with your healthcare provider.
    • Remember, don’t have vaginal, oral, or anal sex or sex that involves penetration until your platelet count is above 50,000 (50).
  • Use a barrier device (condoms or dental dams) anytime your partner’s vaginal secretions or semen could enter your mouth.
  • Don’t take part in any sexual activity that could expose your mouth to feces.
  • Don’t have sex that involves contact with mucous membranes if a genital infection is suspected or present in either you or your partner.
  • Use birth control (contraception) so that you don’t get pregnant. If you’d like to get pregnant in the future, talk with your doctor.

Hugging, cuddling, gentle touching, and kissing skin are other ways you can be intimate with your partner during this time. For additional information about being sexually active during and after treatment, read the following MSK resources:

The American Cancer Society also has resources on sexuality following cancer treatment. They are available for free from your local American Cancer Society or on the ACS website at the links below:

Information for women

After your transplant, you may have:

  • Fewer menstrual periods
  • No menstrual periods
  • Dryness and discomfort of your vagina and vulva (the area outside your vagina)

Vulvovaginal moisturizers can help relieve dryness and discomfort of your vagina and vulva. They don’t contain any hormones and are available without a prescription in most drug stores or on the Internet. Examples are Replens® and Hyalo GYN®.

Lubricants for sexual activity usually come in a liquid or gel form. They’re used to supplement your own lubrication to minimize dryness and pain during sexual activity. You can use them to make sexual activity more comfortable and pleasurable. Examples are Astroglide®, K-Y® Jelly, Pjur® Woman, and Bodyglide, which is a silicone-based lubricant. For more information, read our resource Vulvovaginal Health.

Depending on your treatment, the function of your ovaries may change. This can result in lowered estrogen levels. Your doctor may recommend that you take estrogen supplements after your transplant.

If you need any help or support with these issues, your doctor can refer you to a specialist in the Female Sexual Medicine and Women’s Health Program. You can also contact the program directly by calling 646-888-5076.

Information for men

You may experience lowered sexual desire after your transplant. This could have an impact on your relationship. However, as you regain your strength and increase your activities, your sexual desire should also increase.

You may also experience erectile dysfunction (ED) after your transplant. ED can be treated with medication, including sildenafil citrate (Viagra®) or tadalafil (Cialis®). There are many other ways to treat ED.

If you need any help or support with these issues, your doctor can refer you to a specialist in our Male Sexual and Reproductive Medicine Program. You can also contact the program directly by calling 646-888-6024.

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Drinking Alcohol and Using Tobacco

After your transplant, your organs need time to recover. Alcohol can harm your liver and your recovering bone marrow. This harm can be worse if you’re taking medications that can affect your liver. Don’t drink alcohol until your doctor tells you it’s safe.

Never smoke:

Cigarettes Marijuana
Cigars Other tobacco products

Doing so can lead to a serious lung infection. Smoking or using other tobacco products such as chewing tobacco can also increase your risk of a second cancer.

If you need help quitting, contact the MSK Tobacco Treatment Program at 212-610-0507 or go to: www.mskcc.org/cancer-care/counseling-support/tobacco-treatment

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Follow-Up Care

Your follow-up visits will be scheduled before you’re discharged. Your doctor will determine how often you will need these visits. If you’re doing well, they will be scheduled further apart.

Creating a MyMSK account may help you keep track of your follow-up appointments. MyMSK is MSK’s patient portal. It’s a private, personalized webpage with information about your appointments, results of lab and radiology tests, and a place to communicate with your care team. For help setting up a MyMSK account, watch our video How to Enroll in the Patient Portal: MyMSK.

What to bring

When you come to your follow-up visits, bring a list of all the medications you’re taking, including patches and creams, and the dosages of each one. Make a list of any medications that need to be refilled. If you’re going to run out of any medications before your follow-up visit, tell your doctor before your appointment. You will be given prescriptions during your visit to be filled either at MSK or your local pharmacy.

You may also find it helpful to bring a list of questions that have come up since your last visit.

What to expect

You will have blood tests to check your blood counts, electrolyte levels, and liver and kidney function. Your doctor will tell you if and when you will need a bone marrow aspiration.

You may need to have intravenous (IV) treatments, including antibiotics and blood transfusions. If you do, your doctor or nurse will tell you for how long and how often you will need them. The appointments will usually be scheduled on the same days as your follow-up visits.

Vaccines and Immunization

After your transplant, you will lose the protection from the vaccines you got as a child. This means you will need to get your childhood vaccines again once your immune system has recovered. This usually happens about 1 year after your transplant.

Your transplant team will coordinate your vaccinations once it’s safe for you to get them, or you may be referred to a nurse practitioner in our Immunization Clinic. The vaccines can be given at MSK, or your NP can give your primary care doctor a list of the recommended vaccines. Sometimes it’s difficult for primary care doctors to get the vaccines, so you may need to get them at MSK.

Dental care

After you’ve recovered from your transplant, go to your local dentist for routine checks. If you need extensive dental work, have your local dentist call a dentist at MSK at 212-639-7644 before treating you. Your transplant doctor will tell you when it’s safe to resume all dental care with your dentist.

Tell your doctor or dentist if you have:

  • Taken the medications pamidromate (Aredia®) or zoledronic acid (Zometa®)
  • Jaw tightness
  • Toothaches
  • Discoloration at your gum line

Eye exams

You may develop cataracts if you received radiation therapy or high-dose steroids. If you develop any of the following symptoms, see an eye doctor:

  • Vision that’s cloudy, blurry, foggy, or filmy
  • Changes in the way you see color
  • Problems driving at night, such as glare from oncoming headlights
  • Problems with glare during the day
  • Double vision

You may only need a change in your eyeglass or contact lens prescription. Be sure to tell your optician or eye doctor what treatment you had. Try to wait until at least 3 months after your transplant before getting a new vision prescription, as your vision can change during the recovery process.

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Common Medications to Avoid

Don’t take aspirin, any medications containing aspirin, and all other nonsteroidal anti-inflammatory drugs (NSAIDs) until your doctor tells you it’s okay. For a list of these medications, read our resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).

Check the label of any over-the-counter medications that you’re thinking of taking to be sure that they don’t contain ingredients you should avoid. If you aren’t sure about whether or not a specific medication is safe to take, ask your transplant team.

Don’t take any herbal supplements or home remedies without talking to your transplant team first.

 
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Resources

MSK resources

Patient & Caregiver Education
The following resources can be found on MSK’s Patient & Caregiver Education website, www.mskcc.org/pe. Search for the title, or ask your doctor or nurse to print the resource(s) for you.

Female Sexual Medicine & Women’s Health Program
For information about issues related to female sexual function.
www.mskcc.org/cancer-care/treatments/symptom-management/sexual-health-fertility/health/female-medicine
646-888-5076

Male Sexual & Reproductive Medicine Program
For information about issues related to male sexual function.
www.mskcc.org/cancer-care/treatments/symptom-management/sexual-health-fertility/health/male-medicine
646-888-6024

MSK Tobacco Treatment Program
For information about quitting smoking or other tobacco products.
www.mskcc.org/cancer-care/counseling-support/tobacco-treatment
212-610-0507

 

MSK Dental Service
To speak with one of MSK’s dentists before having extensive dental work done locally.
212-639-7644

External resources

MedicAlert Jewelry
For information about MedicAlert jewelry, including bracelets and necklaces.
www.medicalert.org

Sexuality for the Man With Cancer
For information for men about cancer, sex, and sexuality.
www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/sexuality-for-men-with-cancer.html

Sexuality for the Woman With Cancer
For information for women about cancer, sex, and sexuality.
www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/sexuality-for-women-with-cancer.html

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