Chemo with delayed shingles treatment,bad bad.
Posted , 4 users are following.
I was released from hospital after five days of chemo for lymphoma. White count way down brought on shingles. Shingles showed up same day as released. Went 3 days before put back in hospital for a raging case of shingles. From spineat waist around left side down intestines on left side to crotch on left leg down leg to knee. Blisters covered entire theigh about 3/4 to one inch high, unbelievable. Nurses came from all around to see.
i am 77 years old but have been fairly active, blessed I'd say until this. Weakness from chemo and shingles keeps me in bed for now. Anyway, Tylenol and Advil are useless, forget them.. my pain goes from a 7 down to about a1or 2 with hydrocodone IF you don't move around and stay still. Movement aggravates it. I fear I have PHN due to my delayed treatment. Plan on seeing a pain management Dr. Next week. Hot spot of pain in left groan. Cannot stand long enough to fix myself coffee in morning😬
0 likes, 8 replies
wanda63183 ernest52949
Posted
laura55511 ernest52949
Posted
ernest52949 laura55511
Posted
Laura how were you diagnosed with PHN. I've heard you have to wait about 9 to 12 weeks before a PHN diagnosis. Who actually makes the determination? I don't think their are shingles specialists. What type of Dr. Is best to deal with shingles.
My Oncologist is treating me along with my cancer. He tells me he is very familiar with shingles because in cancer treatment your white count goes way down and that's when shingles attacks cancer patients. So he seamed knowledgeable. Is there a better option that you ar anyone know of?
Merry19451 ernest52949
Posted
I am so sorry you are going through dealing with Lymphoma, Chemo, and the excruciating pain of Shingles right now. I understand the agonizing, lancinating pain, sleepless nights, and suffering.
I am a Nurse Practitioner in the States. I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye. I have had breast cancer, radiation, and chemo, which of course worsened the shingles frequency and intensity.
This is a summary of the stages, signs and symptoms of Herpes Zoster-Shingles, and medical management of the disease.
During the Pre-eruptive Phase, you may have some of the following symptoms:
Duration 1-10 Days, but the rash occasionally takes much longer to appear
Headache
Photophobia
Generalized Aches and Pains
Fever, Chills, and Sweating
Enlarged Lymph Nodes near the pain and rash
Fatigue and Exhaustion
Pain usually preceding the rash
Description of pain: deep burning or aching pain, or electric shock–like pains.
Acute Eruptive Phase
Rash of grouped vesicle-blisters in a dermatomal pattern.
Occurs in waves or crops over a period of 5-7 days.
Vesicle-blisters look dissimilar and are of different sizes.
The rash is on a red base.
The pain may continue to increase into the second and third week.
The clear vesicle-blisters cloud over, look like pustules, scab over, and turn black. This process may take between 2-4 weeks. Once every vesicle-blister has scabbed over, you are no longer infectious!
You are considered infectious (contagious) if your rash is open to the air, ie not covered, to anyone who has not had chickenpox. This includes all pregnant women! Remember, not all women know they are pregnant!
Chronic Phase (Post Herpetic Neuralgia PHN)
30 days after onset of rash. Definition varies
Duration may last months or years after initial episode of Herpes Zoster-Shingles.
The resolution of the scars can take up to a year to heal.
Management and Medications
ANTIVIRALS: THE CORNERSTONE OF TREATMENT
Famciclovir 500 mg 3x daily 7-10 days, sometimes 14 days. With you, you should be on the Antivirals much longer as you are immunocompromised.
Smallest Tablet
Convenient dosing
Least Resistance
Valcyclovir 1000 mg 3x daily 7-10 days
Large Tablets difficult to swallow for some
Based on Acyclovir
Acyclovir 800 mg 5x daily 7-10 days
Inconvenient Dose Schedule
Growing Resistance to Varicella Virus
Acyclovir is the antiviral most often prescribed in the UK.
What dosage of the medication are you on? Sometimes, the Physician places the patient on a lower dose, but needs to increase it to help with the pain-itching.
Sometimes, you need to be placed on a cocktail of medications, as they will work synergistically to help you. These are all by prescription. I have grouped them according to class. A clinician would start with one from the Anticonvulsant class, taper the dosage up, then one from the Antidepressant Class, etc. This list is by no means complete.
ANALGESICS
NSAIDS
Ibuprofen
Naprosyn
Acetominophen
OPIOIDS
Oxycodone
Hydrocodone
Codeine
CBD
You should be on Oxycodone 10 mg every 4-6 hours for the pain. Hydrocodone is much weaker.
ANTI-CONVULSANTS
*Gabapentin-Neurontin is a good secondary drug for the Neurogenic pain. You should ask for Gabapentin in addition to Oxycodone.
Lyrica is more difficult to wean off of and more side effects.
Pregabalin-Lyrica
ANTI-DEPRESSANTS
SNRIs
Cymbalta
Effexor-Venlafaxine
Heterocyclics
Nortriptyline
Amitriptyline
2. I would find 100% cotton knit clothing. Make sure there are no seams to irritate your skin. The cotton knit is the most breathable, least irritating cloth to most individuals.
3. Use Lidocaine Cream or Spray OTC topically to help with the pain- itching, eg, Solarcaine with Aloe or Bactine. Many on this forum feel either Lidocaine or Benzocaine help with the pain-itching. The cream might soothe the inflamed nerve endings better and last longer on the skin. You can only use Lidocaine 12 hours on and 12 hours off, as the usefulness will extinguish itself.
4. Use ice or cool compresses. Do not take hot showers, as it will only increase the pain-itching
5. You need to rest and sleep. You cannot power through this disease. Do not go back to work! This virus is way stronger than you are, and you will only get more pain, the more exertion you do.
6. Most Importantly, get the Shingrex Immunization. It is a two phase vaccine, two months apart. It is given intramuscularly. It is highly efficacious in stopping Post Herpetic Neuralgia PHN and recurrent episodes of Herpes Zoster-Shingles.
Shingrex is available in the US at the pharmacy and covered by insurance if you are over 50 years of age. If you are younger than 50, and have had a documented case of shingles, it is still covered.
If you are in the UK/Canada/Australia/NZ, I know it has been distributed there, but the national health insurance may not cover it until age 70, which is ridiculous. It is expensive, but I would have paid thousands not to have recurrent shingles.
I hope this helps you. I am so terribly sorry you are going through this difficult time, and then to have shingles on top of it.
Please know we on the shingles site are here for you!
Hugs to you!
Best Wishes
Merry Juliana
ernest52949 Merry19451
Posted
Thank you Mary, you are a wealth of knowledge. I am on once a month chemo now as an outpatient. I am starting week nine with shingles and am slightly better. My pain level goes from 7/8 down to about a 2 with hydrocodone about every 7/8 hours. My pain and extremely weakness in my left thigh and also my knee.. I cannot bend down and use my left leg to lift me up, it won't cooperate and afterwards is very painful for several days.
Does anyone else experience this pain and extreme fatigue?
i am on antiviral capsules and gaberpinton 3 times per day. This is getting old .
Merry19451 ernest52949
Posted
Hi Ernest,
A lot of us do have the agonizing pain and exhaustion, both of which are worse when you are going through chemo &/or radiation. I am not trying to marginalize the shingles only patients out there by any means, as it is bad enough.The pain is more difficult to deal with when you are dealing with cancer as you have the extra psychological layer of the cancer diagnosis, treatments, chemo, radiation, in my case surgery-partial mastectomy. You have Post Herpetic Neuralgia PHN, by definition. As your pain is not being well-managed, consult with a neurologist or pain management specialist who can titrate medications. You are in this for the long haul as a lymphoma patient.
If you are in the States, and it has been nine weeks. you can ask about getting the Shingrex vaccination. It is a killed virus, which means there is no danger to those of us with cancer or immunocompromised, like us. If your leg is too painful with hydrocodone, ask for oxycodone. It is a much better analgesic. Shingles is excruciating, as you know, and you shouldn't have to suffer.
Please let me know how else bi may help. I went through breast cancer, surgery, chemo, radiation, etc, and of course, continued with the shingles, non-stop. The pain only intensified.
Where are you located?
How is your treatment for lymphoma going?
Best Wishes
Merry Juliana
ernest52949 Merry19451
Posted
Hello Merry, wow I thought I had it bad but you had a triple whammy. I think you're right about the long haul. I live in Biloxi, Ms. In the US. I am starting with a physical therapist that has knowledge of shingles. My left leg needs lots of work but I realize it will be slower than regular rehab.
my 8 week pet scan showed about 90% clear. I will start a one day per month R-CHOP this week. This will be a four month treatment. I don't know after this is finished. I hope that by December my shingles pain and cancer will both be gone. Happy New Year.
Merry19451 ernest52949
Posted
Supposedly, I am in the clear, but the oncologists always say that! LOL. My identical twin and I were diagnosed with breast cancer at the same time, same breast, same location in the breast, same tumor type, same tumor markers, same size to the mm, identical everything. Fortunately, our prognosis is excellent. They have found 72 more genetic mutations for breast cancer, in addition to the 32 they test for. I am certain we will test positive for the genetic mutation(s) eventually.
We are doing well, however and keep on living our lives normally, whatever that is...
I am glad you are responding to the lymphoma treatments. It can be difficult to go through the treatments. Sometimes, I felt I was in the middle of a Sci Fi movie when getting radiation.
Please keep me posted on your progress!
Best Wishes
Merry Juliana