I received the Prevnar 13 vaccination last Tuesday in my right deltoid muscle. The area was very sore for several days, which was unlike the other pneumonia shot, which did not cause any pain. A few days ago I noticed that area under my arms is tender. It hurts a little when I roll on deodorant. I think the area might be a little swollen, unlike my left underarm.
I have my 3 month appointment on wednesday, at which time my CBC will be taken. I will mention my experience to the nurse practitioner who works under my oncologist.
I was just wondering if anyone has had a similar reaction to the Prevnar 13 vaccine. Also, on an unrelated note, I am not very happy that I don’t get to see the oncologist at my 3 month appointments. I would rather have the oncologist examine me. I am thinking about trying to find a oncologist who will actually spend 5 minutes with me when I come in for my regular visits. My question is how many of you in watch and wait see the oncologist as opposed to a nurse practitioner for your regular appointments? Thanks. Dale.
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DaleFL
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We have always seen the doc. But it has only been 3 times. I think I would feel (for hubby) ok with the nurse.
He had his 2nd jab of that and his muscle was more sore than flu but that was it. He had the 1st one before diagnosed but had a wbc that was off so the CLL was lurking.
I always see the haematologist Dale and wouldn’t be at all happy to see a nurse for my consults. The advice from Chris is good.
The only reaction I’ve had to a vaccination was the tetanus I had and my arm was very painful and uncomfortable for a few days. Sometimes I think they hit a muscle and it’s much more painful.
Hi im interested in your post as due to have same injection soon. I am on W and W and now have a telephone consultation every 6 months with nurse specialist. I have never been examined and so not sure what i am reporting back as have never had swollen lymph nodes and not sure what they would feel like. I agree i feel a little left in the dark and no one has really explained any of my blood test - and as you can imagine I have had many. I continue to watch and wait!!! I have only ever had phone consultations after my dismal initial consultation.
I have always seen the doctor (14 years) and, while I might have to wait when he is running late, once in a room I always get all of the time I need., whether it's 5 minutes or an hour or more.
Newcastle - I hope you can find a better situation! I would not consider what you are getting to be even minimal care from any doctor! I hope someone here can help with that!
Make sure it's a hematologist, preferably one with a special interest in CLL. My first doctor was a general oncologist. He knew next to nothing about CLL.
Are you in the USA? If so, I suggest finding an Oncologist that specializes in CLL and also in Hematology. We're in Mississippi and have that in the capital city. We drive a 30 minute drive.
Once hubby was diagnosed on annual regular checkup,(throughLabs bloodwork) our internal medicine doc referred us.
Although we had one crisis after another in the beginning in 2013!
Now that he's on Ibrutinib Imbruvica and Medicare, and doing well...we will see nurses for monthly bloodwork and see the doctor again in February.
I had the same type of reaction to the Prevnar 13 shot. I was seeing the hematologist shortly after that for my 3 month checkup. The nodes under my arms had swollen and he said that it was most likely a reaction to the shot and was not concerned. They did eventually go down and the pain subsided.
I do see a hematologist at every checkup and am glad I do. I don't feel comfortable with a PA or nurse doing my exam. I also like it especially when I have questions and feel he can answer them fully.
My Dr. (hema/onco specializing in blood cancers) has 2 RN specialists and I have no problem seeing them if he is away. They both know what to look for and in some cases are more verbal than the Dr.
Both they and the Dr. answer any questions and share copies of all tests with me. Unless you are seeing a hema/onco who knows CLL, you are just as well off seeing his nurse.
I hope you can find a hema/onco and feel secure with the information you get.
I see haematologist every three months, nurse, every month. I can see any of them at anytime. 24hr triage number. I had flu & pneumonia shot - it took over a month for swelling to dissipate- egg sized swelling under my arm
I note in your post you keep referring to your oncologist, so I just want to clarify primarily to inform new patients. We CLL patients see haematologists as they are the experts in blood cancers. I hope and suspect that you were actually referred to one and not an oncologist who deals in solid tumour masses.
I saw an oncologist when I had chemo post surgery for ovarian cancer, and I see the haematologist for my Cll. The haematologist I see runs the clinics, and I sometimes see her, or her registrar, or doctors in training. To me not a problem as they have always been extremely efficient and caring, and able to answer my questions and most importantly give me a copy of my blood results which I monitor for trends. There is also access to the specialist nurse who is very knowledgeable always available by phone or email to sort out any queries.
This department is under a professor who is a cll expert, and also runs a research department. I never see him and do not expect to unless I need to start treatment. All this to say you need to feel confidence in those responsible for your care, you can ask to see the senior doctor in charge if you need that reassurance, or ask to be referred to another centre.
Sorry your prevnar jab was uncomfortable, but worth it for the extra protection.
Hopefully the reaction is positive in that your immune system is reacting to the vaccine.
I saw my consultant a few times when first seen and she spent the time I needed. I am on W&W and usually see a registrar now for the time I need which is good - the consultant is involved in reviewing my case. If the appointments slip it is because someone needs more time - time I was given when needed it.
They have nurse practitioners in A&E. I was seen by one in Feb of this year. While she may have been competent at dealing with triage and sending people for X-rays, had she had a bit more knowledge then I would have been given a blood test instead of an X-ray and antibiotics instead of just painkillers. That would have dealt with a septic arthritis infection and saved my hip.
Mind you, a junior GP also dropped the ball. When I was finally seen by a physio, it took her mere minutes to conclude that there was some serious infection going on.
When I finally saw the orthopaedic consultant, he said “I don't know why they didn't put you on antibiotics”
So, I stay away from nurse practitioners......and junior doctors !!!
My arm was a little tender after the Prevnar 13 but it passed.
On the subject of the oncologist I simply see him every three months, no PA and no nurse practioner. With me it’s just a personal preference after my daughter had some complications when treated for ALL at age 14 and the nurse practitioner incorrectly overruled an oncology fellow! It’s not that I don’t trust them but psychologically I just feel better served and my questions can be answered. I also have his direct email which I can use if needed and he replies immediately, altho I am careful not to abuse it.
In the end it has to do with your comfort zone and go with that......after all YOU are the patient.
I visit the oncologist office every two months. One visit I see the oncologist the next visit I see the nurse practitioner. They both spend a good deal of time with me and answer all my questions. I know I am lucky to have found them.
I had gotten the Numovax shot first. Then few years later forgot to get the second - prevnar. My family doc did not give them, I wasn't covered by going to CVS or Walgreens. I live in FL but worked in NJ and they won't cover me unless I get it in NJ. Twice my trips to NJ over a year and half ended up getting canceled. From what I was told and read, you are supposed to get those 2 pn shots within a year of each other. I took it as a sign I should not get it. I feel spooked now that something would have gone wrong if I got the shot. There were too many obstacles. Not suggesting people should not get it. I spent hours on phone, months planning the trip and it just seemed too coincidental.
My oncologist didn't hear about Shringrix shot. Non live virus that seems promising for CLL patients. When I see her in January, I will ask her if she researched it and her opinion about getting it. Anyone get Shringrix shot yet?
Hi Dale, my arm was a little sore after a Prevnar 13 shot. I didn't notice any lymph swelling. I see my oncologist at every other appointment and a NP at the next appointment. I go to their office every 3 months at this point in my treatment journey. In September I completed a regimen of Rituxan every other month seeing the doctor at every other appointment. This week I will see the doctor twice: office visit because of enlarged spleen and will have a BMB tomorrow and a PET scan on Thursday. I have been diagnosed with both CLL and CMML.
In my experience, the Prevnar 13 vaccine caused no problems, but this year's flu vaccine hurt all the way to my hand! I think it's just one of those things. If you are improving, even slowly, then it may have been the needle or the vaccine causing a local (temporary) reaction. I'd let your medical care-giver know your reaction. - Best wishes! Glad you got your immunization done! P.S. I've been examined by the NP, but I just feel more comfortable with the oncologist, because I've been seeing him longer (since the beginning of my CLL diagnosis). I'll wait longer if need be to see the doctor, but if he is unavailable, I will be examined by the NP.
Brand, Site of Injection, and Reporting Adverse Events
I hate to see people avoid vaccinations due to fear of pain or injury, so I spent some time researching this very real problem.
I recently got the Pneumovax23, and had noticeable pain at the injection site for a week plus some arm weakness.
There's 2 kinds of pain involved in an injection:
1. The the momentary injection pain
2. The longer lasting pain at the site and surrounding area
Many studies only look at ways of reducing the first type.
Unless the vaccine is a live vaccine - and these pneumonia vaccines are not live - I believe the pain is caused by the formulation of the vaccine, and not the antigen (the pieces of various types of pneumonia bacteria). In addition to the antigen, vaccines also contain other ingredients, such as adjuvants.
The adjuvant is an additional chemical, usually some sort of metal, which stimulates the immune system to come discover the site of the vaccine, and to "present" the antigens from the vaccine to our adaptive immune cells to start the process of memorizing them. The adjuvant causes inflammation on purpose.
Both Pneumovax23 and Prevnar13 use aluminum phosphate for the adjuvant. Aluminum phosphate is the most common adjuvant, and is used in many, if not most vaccines. The annual flu virus uses a different adjuvant, though.
I found one study on PubMed [1] on vaccination pain in children that noted that one brand of one vaccine produced less pain on surveys than a rival product. I found that there are multiple suppliers of our pneumonia vaccines, besides the brand name supplier. [2] To my knowledge, nobody is tracking pain vs. brand on any vaccine other than the one mentioned in the reference below. That reference has other recommendations that could possibly be useful for adults. Maybe we should start tracking such things. I think that older people, as well as the chronically ill, factor pain into decision making. When you're already suffering, I think it's psychologically easier to try to avoid more suffering.
In the U.S., I discovered while researching this that there is a place to report unusual pain or other unusual vaccine problems:
The form is pretty complex. I would suggest reporting the pain to your healthcare provider, and have them help fill it out and submit it.
I also found an article that seems to indicate that injections given higher up on the arm have a higher chance of prolonged pain. [3] That article is on the Washington Post website. (If you read that site often, you may use up your free views - if you use a different browser, or clear your browser cache and cookies, you can then view it. Message me if you need help with that.)
The article stresses some best practices for such injections:
• An intramuscular vaccination in the arm should avoid the top third of the deltoid muscle and aim for the middle of the muscle, its thickest portion.
• Both the patient and the provider should be on the same plane — that is, either both sitting or both standing, although sitting is preferred. This reduces the risk of inadvertently injecting the vaccine too high up into the shoulder. ... It is also a good idea to hold the arm out a little from the side, a position that helps protect the bursa.
• The injection should go into the muscle at a 90-degree angle to the skin.
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