Help - Just diagnosed with Hodgkin's Lymphoma

jorgo

58 year old male and was just given the diagnosis a few days ago. Meeting with Hematology and Oncology next week. What should I be purchasing for Chemo visits to make myself more comfortable and to hopefully make the side effects (sores, nausea, pain, hair loss) lessen. Also what should I be purchasing for my home. I live by myself but luckily have a really good support network. Not looking forward to this journey but I know I'm going to kick cancer's butt and would appreciate anything/everything from y'all.

po18guy

Sorry to hear of this. Do you know what your treatment regimen will be? Side effects are often very similar, but certain regimens are known for particular side effects.

Normally, a lot of hydration is recommended. A good laxative will almost certainly be needed, and lotion to moisturize your skin. As to nausea, I used Ativan and found it very effective. I carried it with me and if I felt a hint of nausea, I popped a tablet beneath my tongue and allowed it to dissolve in the same manner as heart patients take nitrogolycerin. It is a very quick method of getting the drug into your bloodstream. Normally all hints of nausea were gone in 5-10 minutes.

As to diet, eat whatever seems appealing or will stay down. This is no time to radically change your diet, as your system will be under enough stress as is. However, hydration and high fiber will help. You may also experience diarrhea, and common OTC or even prescriptions are available to help.

Some good reading material, a warm blanket, earphones, sunglasses etc. might well be useful. You will have a driver, correct?

katiedemarley

For chemo and ports it’s good to have hard candies on hand to deal with horrible flush taste.

For the home it’s good to have these items:

Clorox wipes

Laptop tray

Good pillows and or husband pillow

Sports drinks

Stool softeners

Vomit bucket

Books or magazines and movies and or streaming service

Benadryl (never know what new drug you may be allergic too)

Masks for visitors for when/if your anc and wbc get low

N95 masks for you when/if your anc and wbc get very low

Eucerin lotion - skim calming

No scent soap and detergent

Button up short sleeve PJs and bathrobe for possible hospital stays.

Sorry you have to go through this… it will suck. Remission will make all the awful days worth it.

I had r-avbd in 2008 and ICE with auto STC in 2012 for Hodgkins. I had plenty of awful days but thanks to chemo brain I don’t remember a lot of those days. On that note have pen and paper on hand to write stuff down. It will take a few cycles but the forgetfulness will likely come too.

Max Former Hodgkins Stage 3

Welcome, J.

First, be aware that most types of HL, at most stages, are usually put into full remission with first-line chemo. Radiation is seldom used against blood cancers, and surgery virtually never (except for biopsies). How long you receive chemo will depend on the Stage, mostly. But even a Stage II will ordinarily take a couple months, while stages III an IV usually take a six month regimen, usually of ABVD or a similar cocktail.

Since you live alone, get a DRIVER arranged for your infusions, since you will not be able to drive yourself afterward.

Side-effects are not predictable or preventable. There are about 10 or so relatively common side effects caused by the drugs; some of these effects are common across the board, and some are linked usually to specific drugs. Even if you are on a relatively harsh regimen, like ABVD, virtually no one gets all of the usual side-effects, but it is also true that most people will have at least a few, of widely varying severity. It is truly pot-luck regarding which problems any given patient will or will not experience.

Severe fatigue is very nearly universal in long term chemo, and given that lymphoma almost always causes fatigue even before treatment, weakness and a LOT of sleep are the norm. This, and all, symnptoms increase with time and doses received. Going one or two infusions and then thinking, "This aint so bad" is not uncommon, but may not indicate what is to come. Plunging white cell counts is routine, and neutropenia (low white counts) can cause serious fever, hightened infection risks, and worse. Neutrophenia is treatable with neulasta when needed.

Anemia is fairly common also, but less so than neutropenia. The drugs can cause durg-induced anorexia, which worsens anemia of course, and chronic nausea doesn't help. I got anorexia after about five infusions (two and a half months in), and for a time had to live on Ensure and breakfast drinks. Food fetishes are common during this. For a time, when I would eat, it was only french fries. I have a friend who had NHL who ate only pot pie for months. In situations like this, the doctors almost always recommend eating whatever you will eat. METAL MOUTH is a situation in which the mouth feels like it is full of metal. I had a variant of this, in which I always felt as if there was a cup of table salt in my mouth; these are variants of taste disorders. Some people simply lose all sense of taste, and some lose smell also. Many people experience mouth sores.

Neuropathy, or numbness in the hands or feet. This is a condition most often linked to the drugs vinblastine and vincristine. Chemo neuropathy has a different causality than diabetic neuropathy, and is not treatable with diabetic neuropathy drugs. It somtimes effects the hands or the feet, and sometimes both. My feet would get numb to mid-calf, and my hands lost the ability to turn pages or feel things. I was pretty severe, and participated in a nationwide Drug Clinical Trial after chemo ended. The drug being studied at that time was judged a failure by the FDA. I still have neuroppathy today, 14 years later, but it has mitigated tremendiously over the years.

Nausea is perhaps the most famous chemo side-effect. Luckily, in most cases it is managable. I used EMEND, and I never had chemo-related nausea that I can recall. Some insurance plans will not pay for EMEND, or at least would not when I was undergoing ABVD, but luckily mine did pay. Ask your oncologist about this in advance.

Some drugs cause the fingernails and toenails to turn black and get brittle. In some individuals, the nails fall out.

About 50% of chemo drugs cause hair loss. Hair loss can be partial or total. I lost all hair everywhere on my body, including my eyebrows and eyelashes.

Flu-like Syndrom. This one is nasty, but luckily a bit less common. In some individuals, the drugs cause the body to feel as if it has a serious infection, and you feel as if you do. Muscle aches and fever occur. I endured flu-like symdrom for about four months….

Breathing difficulties This is a bit less common also, and is usually linked to the drug Bleomycine or a few others. If you have breathing troubles, contact your doctor right away.

Brain Fog, aka "Chemo Fog" This is moderately common, and consists of short-term memory loss and reduced ability to concentrate or focus. The confusion leads to irritability in some.

Note Well: Nearly all of these conditions go away over time, after treatment ends. Some faster than others. Hair almost always returns, but it is frequently thinner or different in texture. Nails return to normal. Neuropathy goers away over time for most. Appetite and normal sense of taste usually come back.

And recall that most people only get a few of these side effects. I, unfortunately for me, got everything I described above. Good luck, and a lot of people are here to answer questions.

Chemocare.com is extremely valuable for chemotherapy information. It is affiliated with The Cleveland Clinic, one of the best oncology centers in the world.

Your primarily source of information must, of course, be your own doctor. I have zero medical training myself, but all that I have written above is commonly known and available in the public domain. I initially learned about the conditions above by living through them, and reading voraciously about them. Every assertion given above is availalbe at the chemocare website (I know this by reading their articles on all of these conditions), and a multitude of other cancer centers' websites. I will gladly give documentaton for anything stated above. The United States Institutes of Health is excellent for up-to-date information regarding statistics and the status of various drugs. The journal Blood is also fantastic

Max